Diabetes Connections | Type 1 Diabetes (Stacey Simms)
Explorez tous les épisodes de Diabetes Connections | Type 1 Diabetes
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| 15 Aug 2017 | Bike Beyond - The Big Finish! | 00:54:17 | |
After ten weeks and more than 4000 miles, 20 riders with type 1 diabetes completed their epic journey from New York to California. In this episode, hear the heart-pounding and emotional Bike Beyond finish and listen to the man who started it all talk about what the event has meant to him. We also catch up with several riders during a rest day a few days before the finish. Those interviews took place while they were relaxing in a hot tub (a first for our show)! Stacey also talks about the great people behind the Real Life Diabetes Podcast and shares events she's traveling to in the next few weeks. Find out more about supporting Bike Beyond so that Beyond Type 1 can continue to fund diabetes programs (listed here) Time Codes: 8:30 Bike Beyond finish line and front tire "dip" 12:30 Walt Drennan speaks about finally feeling "normal." Six Bike Beyond riders talk about the trip: 18:15 Perri Silverheart 22:00 Abbey Brau 29:30 Matt Swain 34:50 Sid Sharma 39:00 Cassidy Robinson 45:30 Jesse Lavine Diabetes Connections and Stacey are nominated for a podcast award! Please add your endorsement to the WEGO Health Awards Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Sign up for our newsletter here As always, thanks for listening!!
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| 27 Aug 2021 | In the News.. type 2 youth study, mini glucagon made easier, CGM via radio waves and more! | 00:06:41 | |
It's "In the News..." the only LIVE diabetes newscast! -- Top stories this week: T2D screening guidelines to change New Gvoke Kit approved Gestational Diabetes cases up in younger women Are magnets & radio waves coming to T1D care? Update on #DiversityInDiabetes -- Links and sources in the transcript Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live on Wednesday August 25th 2021 – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want. XX In the News is brought to you by Real Good Foods! Find them in your local grocery store, Target or Costco. Real Food You Feel Good About Eating. XX Top story this week.. the number of young people with type 2 nearly doubled in the United States from 2001 to 2017. These researchers found significant increases in all types of diabetes among both sexes and across racial and ethnic groups. Type 1 diabetes remains more common among white youth. The highest rates of type 2 diabetes were seen in youth who are Black or Native American. It's interesting that these CDC and NIH researchers say they don’t know the cause of the huge increase in type 2. They talk about rising obesity, but wonder what’s behind that? They also wonder if it’s because of increased screenings, environment or something else. https://www.reuters.com/business/healthcare-pharmaceuticals/diabetes-surges-among-american-youth-study-shows-2021-08-24/ XX Big change recommended in screening for adults with type 2. The U.S. Preventive Services Task Force now recommends screening for people who are overweight starting at age 35… five years earlier than recommended right now. That would include 40% of the US adult population. This task force recommends screenings that insurance companies must completely cover, without out of pocket costs to the insured, under the Affordable Care Act. XX FDA approval for Gvoke Kit to treat severe hypoglycemia. Xeris pharmaceuticals already provides Gvoke glucagon as an autoinjector and a prefilled syringe.. this Kit is for patients who prefer to draw up their own doses of glucagon using a vial and syringe. You don’t have to mix anything, it’s still a ready-to-use liquid glucagon. Could be helpful to those who prefer mini-glucagon doses – which are NOT FDA approved – but are sometimes used during illness. Note that’s my comment, Xeris and the FDA is not talking about mini glucagon dosing at all.
https://www.fiercepharma.com/drug-delivery/xeris-a-rival-to-lilly-and-novo-gets-fda-nod-for-glucagon-kit
XX Growing numbers of pregnant women are developing gestational diabetes. Between 2011 and 2019, rates of gestational diabetes in the United States jumped 30%, according to a large nationwide study of first-time mothers. The cause? Not clear. Every age group saw an increase – from 15 to 44 – so it’s not just moms getting older, which is happening. These researchers want to look at non -traditional risk factors like stress. This was a huge study – 13 million moms in the US. https://www.upi.com/Health_News/2021/08/18/diabetes-pregnancy/7401629306285/ XX In the – no thank you – department – researchers say they’ve got an implanted pump you’d refill just by swallowing a capsule. The catch? First, they have to implant the pump – which is described as the size of flip phone - along the abdominal wall, interfaced with the small intestine.
That refill capsule is magnetic, so the implant draws the capsule toward it. It then punches the capsule with a retractable needle and pumps the insulin into its reservoir. The needle must also punch through a thin layer of intestinal tissue to reach the capsule. These Italian developers testing it all out in pigs – they say it controlled blood glucose successfully… for several hours. https://spectrum.ieee.org/implantable-medical-devices XX Another maybe it’ll work item… Israeli startup Hagar has something called G-Wave technology that measures blood sugar levels using noninvasive radio waves. The prototype puts the tech into a ceramic bracelet. Uses Bluetooth to transmit readings to an a mobile app with display and alert functions. A proof-of-concept study found the company's radio frequency technology was able to continuously measure glucose levels with at least 90% accuracy, compared to the estimated 70% rate for traditional continuous glucose monitors. They claim that’s because it measures glucose in real time. Hagar now plans to launch clinical trials to pursue FDA approval XX More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com. Back to the news… XX Big grant goes to Scripps Whittier Diabetes Institute to study the use of CGMs in hospitalized patients with type 2. This is a $3.1 million dollar grant from The National Institutes of Health. It’s to build on research going on now – during the COVID-19 pandemic. CGM devices have been approved for outpatient use since 1999, but their use in the hospital setting remains limited to research efforts and the special conditions allowed during the pandemic. XX Congrats to Diversity in Diabetes for their newly minted 501c3 status. The group was founded last summer and is dedicated to creating awareness and providing solutions to end health disparities and the lack of representation in the diabetes space. Their big event – People of Color Living with Diabetes Virtual Summit kicks off Sept 16 – more info and how to register in the show notes. XX Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from MannKind, makers of Afrezza inhalable insulin. You had a lot of questions for them.. looking forward to that episode! The episode out right now is with Kyle Banks – a Broadway performer diagnosed with type 1 while acting in the Lion King. That’s In the News for this week.. if you like it, please share it! If you’re watching this replay on YouTube please subscribe, if you’re listening via the audio podcast please follow. Whatever it’s called – I appreciate you being here. Thanks for joining me!
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| 23 May 2023 | A better lancet in the age of CGM? Why PIP's CEO Josh Pittman says sticks still matter | 00:32:41 | |
When many diabetes tech companies are turning their attention to CGMs or closed loop systems, Josh Pittman has his eye on the basics: lancets. His company PIP, makes a new kind of smaller and thinner device for fingersticks. This week, we talk about why he thinks this is still necessary, why he's passionate about helping people overcome fingerstick fear and what his mother with type 2 taught him about why the basics are so important to long term care. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 09 Jan 2020 | Minisode #2: Sleepovers & Type 1 Diabetes - What Worked For Us | 00:16:51 | |
Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 This minisode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes. Available now as eBook paperback and audio book, Learn more at diabetes dash connections.com
Announcer This is diabetes connections with Stacey Simms.
Welcome to another of what I'm calling minisodes of diabetes connections. These are going to be shorter shows just me your host Stacey Simms, sharing some thoughts, advice and experience. As always keep in mind, everything I'm talking about here is through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. I am the author of the world's worst diabetes mom. So please keep that in mind. As you listen. I'm going to be talking today about sleep overs and what worked for us and this was sparked by a message I got from Mike. We talked about Mike and his son Ryan, in one of our last Tell me something good segments of 2019. And Mike followed up and asked me, Ryan is I believe in third grade. And he was asking me about sleep overs for the future. So I thought this might be a really good time to talk about what we did and what worked with the backdrop of Benny, my son being diagnosed before he turned two and he is now 15. We give him a lot of independence. Just a couple of weeks ago, he went on an overnight with the wrestling team. They were two and a half hours away. We did not go through everything as I would have with a fine-tooth comb two years ago with the wrestling coach or the team mom, although everybody knows he has type one. I made a plan with Benny and he was fine. I don't expect anybody to start out that way. I mean, remember, it's been 13 years of type one for us. And I am I should say, a mom that really pushes independence toward my kids. My kids push back at me, both of my kids wanted to go away to sleepaway camp when they were little. So that's the backdrop that we're working on. But here's what we did. And here's what I think is important for anybody who wants to start sleep overs. First of all, you’ve got to be okay with sleep overs with or without diabetes. Some people don't like them at all and don't want their kids to do them. That's fine. As long as it's not because of diabetes. I don't think anybody should feel, you know, shamed or embarrassed or bad about that. That's a parent decision. And I've seen online where some people have said, well, it's part of growing up and don't ruin their fun. Look, if it's not your thing, it's not your thing. Don't do it. I'm actually not a big fan of them myself. I find them to be a giant pain to host at my house. And then I worry when they're not at my house and nobody sleeps. Look that some people love them. And if you're listening this far, you're probably thinking about doing it. Alright, so here's what I think you need to keep in mind. First of all, I think your kid should be able to check his own blood glucose and give insulin - with supervision, right? But a child who's going away for an overnight really needs to be able to poke a finger. Get a blood glucose reading. I don't care if your kid uses a CGM. This is something that every kid needs to be able to do if they're away from home, even for a night and give insulin using an insulin pump, or if on MDI, multiple daily injections, got to be able to do it. Otherwise, you're in a situation where you're really leaning on the host parents to go above and beyond and they probably have other kids to worry about that night. So in my personal feeling and experience, I just did not ever asked any other parent to handle Benny's pump or check his blood glucose. You may have a relationship with your friends where they do that. We did not. And there's nothing wrong with giving your kid a goal. You want to go on sleep overs. Hey, let's work on doing these things. If you don't have a CGM, it really is okay to let your kids go on sleep overs. We did not have a continuous glucose monitor. Until then he was nine years old. So we had seven years of no CGM. Is life better with it? Heck, yeah. Would I give it back? No, thank you. But my point is that you really can do this without a CGM without remote monitoring. And here's how we did that. Okay, so in the couple of years before Benny had the Dexcom, we would check in with him at dinner, and before bed, and I know this is gonna sound terrible. He didn't even have a cell phone. I feel like a stone age parent. But we would check in with the parents we would call the house or they would call me from their cell phone, or we would just text back and forth, I would check in with the parents. And we would say, What's blood glucose? What are you eating, blah, blah, blah, blah, blah, and make a plan. Same thing before bed and I use that loosely, we would set up a time with the parents, you know, when they were little, it was probably 10 o'clock. And I would check in what's going on with blood glucose, what's going on with food, and we would decide what the rest of the night would bring. Ask your doctor about this as well, because you might consider increasing the target range overnight. You know, it means some math with multiple daily injections. And it probably means just changing a pump setting or even a temporary pump setting if you use an insulin pump. Now before you yell at me, “I don't want to increase my child's target range, we keep it tight at 85.” Well, you might have a problem with sleep overs. If you want to keep your child within a super tight range. I don't think the first sleep over is the time to do that. I think you're setting yourself up for a lot of stress. And I think you're setting your child up for a lot of stress. In most insulin pumps, you have a target number, and then they do they try to do up and down you know within 20 points of that. So if your target number in your pump is 80, move it to 120 for the night. If your target range is 120 to 180 for the night for one night, talk to your endo before you do any of this, please tell them the crazy lady on the internet mentioned doing it. But all kidding aside, I really think moving that target range up helps everybody sleep better for one night. Now, what about that overnight? If you have remote monitoring, you might think well, that's easy. I'll just watch. I'll stay up and watch the numbers all night long. You can do that. Or you can kind of figure out in your head, When am I going to call, right? When am I going to really decide that I need to intervene. And again, this is personal. Certainly, for low blood sugars. You got to make a plan. And what we did even before CGM is I would always send low stuff now you gotta send it along. I never assume that somebody has it. Because even if their house is stocked and man, Benny has a friend and they keep a giant fridge of regular soda, all different flavors, like it's their thing, but it's all regular, it's all full of sugar in the garage. And you know, you might think, well, he's all set. But you know, your kid may not want to go out of the room in which they're all sleeping or spending the night to go by themselves to the kitchen and the fridge. It's a strange house. They don't want to wake people up. You know, a lot of kids get on comfortable, they want to be polite, they don't understand that the parents are there to help them, you know, so you don't want your kid running around somebody's house low. So I sent everything I want him to eat or drink. If you have particular snacks that you use when their kids low that you know work, send them along. And what we always did was send Benny with a Gatorade, one of those medium sized bottles, it's a lot more carbs than I'd give for a regular overnight low. I think a bottle has 30 or 35 carbs in it, where we usually give like 10 right, but it's easy. So our rule on sleepers is if you wake up and feel wonky, drink the Gatorade, drink it first drink at all, and then check. So when he was younger, he would drink first and then check by poking his finger. As he got a little older, he would check and look at the receiver. Now we can wake up and look at his phone these days. He really does look before he drinks most of the time. But if he feels low, I don't care what the CGM says, drink the Gatorade. And that has never been a problem. He's never woken up and been high and then had the Gatorade you know what I mean? He's never miscalculated. It's always been, I'm low, I'm drinking, I'm good. But what are you going to do about overnight lows, this is a time to sit down with your child or depending on age, make the plan, tell the child and tell the other parents, you know, if my child is below 80 for X amount of time, I'm going to call him or I'm going to call you and ask you to treat. If my child is below 60 for X amount of time, I'm going to call you, you know, things like that. I would make a plan in your head. Think about it, think about how you want to handle it, and then share it with the other parents. It's tough, right? Because it's that fine line of not wanting to scare people not wanting to have your child excluded in the future because it's too much work. But it's also a line of information. They need to know these things. When he was very little, I would send glucagon I would talk about it. I would train my very close friends, just two or three people that he regularly spent time with and I would train them on the glucagon. You know, it's funny, I stopped because I read a study that shows in the majority of cases, caregivers, even trained just messed it up. They didn't use it right, because they were under so much stress. So I always threw it in his bag. But I never trained anybody again, I would include icing, you know, and I had cut the tip off, because I was always afraid that he'd be low. And you know, they have that stupid cap, and then you open it in, you have to cut it or you’re biting it off. I didn't want that happening in the middle of the night. So I would always cut the tip off. And I would talk to them about that, rub a little icing on his guns. But I would also always say, look, it's been X amount of time and we've never had to use it. Right. It's been eight years it's been 10 years and knock wood, right? We've never had to use it. And I think that was reassuring as well. But when you have a sleep over, you never expect an emergency. But when I was a kid, I had a sleep over and my friend cut her leg on the edge of I think it was the edge of my trundle bed. It was metal. I mean, this was back in the 70s and she could have deep enough that we had to go to the hospital and we had a babysitter. My parents weren't even there that night and we had to go to the emergency room and she needed stitches. Crazy things happen on sleep overs. If you're going to have a sleep over, you're prepared to take care of the kid that's there, whether they cut their leg deep enough to need stitches, or choke on a piece of food or having intense low blood sugar. And that's how I usually phrase it because to us, that is how rare it is. That's the chances of it happening or that rare in your case, if you're if you've used glucagon several times, or your child does go low more often. These are things to think about as well and to talk about, and I'll tell you what, with the newer emergency glucagon kits that are out now with Baqsimi and Gvoke this is definitely a game changer. Baqsimi is the nasal spray Gvoke is the already mixed ready to use kind of like an EpiPen. I think you've got a much better chance of caregivers using that accurately. I would send that along for sure. And tell them how to use it especially if you can say hey, it's like an EpiPen. Everybody knows what an EpiPen is. And I think that gives people a lot of peace of mind. We also did test run Now if it's a new family, I really like to do this. We would have like a dinner, play date dinner hang out. And I don't know about you, I don't let my kids sleep at strange houses Anyway, you know, where I don't know the people. So this should be pretty easy. So if he gets an invitation, or you think he's getting to be good friends with somebody, and they're talking about future sleepovers, we always did this. So he'd go to that house for dinner. And he'd stay till when he's little like nine o'clock. And that was a good test run for sleep overs because they could eat, they could hang out, they could see what was going on. And I also made the parents promise to call me with any questions, any questions, no matter how dumb and I would tell them, Look, I'm only going to sleep tonight. If I know that you will call me if I think there's a chance that you won't call me with questions. I will not sleep. So do us all a favor and promise to call me and that usually worked and a little bit of humor. And you know, I don't know why that just reminded me but kind of speaking of humor, did anybody use the share cradle? So if you're not familiar, remote monitoring with Dexcom Share has only been around officially for about four, maybe four and a half years at this point. And I know it seems like it's been around forever, but it has not. And the first iteration of it was this Share cradle. So you would take the receiver, the Dexcom receiver, and you'd slip it into this. It was a cradle it was a little case. And I'll post a picture on it in the Facebook group and show you and you could get the signal then to your cell phone. It was amazing, but it wasn't portable. Well it wasn't supposed to be portable, but people plugged it into a battery pack and threw it in the backpack and took it with them wherever they went. And that was the first official Dexcom portable Share. I mean, not to mention night scout and all the things that that came through the Do It Yourself community. But we had that cradle, and I took it to one exactly one sleep over because it was such a pain in the ass to bring it to find a place where it would pick up the signal where there was Wi Fi. I don't remember what happened. There was a phone issue. And I promise you that night Benny was at a sleep over at Logan's house. And I was gone for 20 minutes. And my friend Karen called me and said, Benny, he says his Dexcom came out. I was like, You know what, spent half an hour sitting the damn thing up in your house. Forget it, just forget the whole thing. Don't worry about it. Tell me not to worry about it. And so I never actually used to the Share cradle at any sleep over. So fast forward to my 15 year old, who spends the night often at one person's house. Now he's got a really close friend. And that's really the only place where he's sleeping over. But he does do overnight trips with school, that sort of thing at the wrestling team, as I mentioned. So now, we just check in before bedtime, really around 10 o'clock, and I say “you good” and that “you good “means is your insulin pump charged? Is there insulin in the pump. Did you do your Tresiba? because he takes long acting along with the pump. And it also means do you have your Gatorade? Now, I know that sounds like a lot in the secret code, but we talk about it I sit down with Benny and I say, What do you need? How can we keep you safe and happy and me happy and not flipping out and not texting every 20 minutes. And that's what we came up with recently. 15 is a lot different than seven in many, many ways. So I wouldn't encourage you to start out that way if you're just starting sleep overs. But also keep in mind, it is hard to believe that in the next year, Tandem and Omni pod are going to be showing that kind of information that I mentioned like is the insulin pump charged it was their insulin in it, it's going to be shown on the remote app. And even though tandems phone app isn't launching with any kind of share remote monitoring feature, my understanding is that you can log into the T Connect account and you can see what's up. So we'll be testing that out in the weeks after we get control IQ. I think the bottom line with sleep overs is they are a fun way to start your kid thinking about independence. They are truly not the time to worry about a super tight blood sugar range. There's going to be weird food, there's going to be weird activity. The idea here is to not let diabetes truly get in the way. Is it there? Yes. Is it going to be very difficult the first couple times, of course, but you can make a plan. You can talk to your kid, you can talk to the other parents and you can find ways to make it fun and make it doable for everybody. One more thing before I let you go, do not misunderstand my attitude. I worry. Every single time that kid goes on an overnight. I worried when he was young. I worry now, I know I'm going to worry when he's older. But the idea here is Look, you're gonna worry you're a parent, but let them do it. You can't let your fear stop your child. Agree? Disagree? Keep in mind I am the World's Worst Diabetes Mom. I would love to hear from you. What do you thinking of these minisodes? Do you have any questions you have any topics you'd like me to address? You can drop them in the Facebook group at diabetes connections the group or ping me Stacey at diabetes dash connections calm and remember the world's worst diabetes mom is available on Amazon in Kindle paperback and audiobook. Find out more at the website, our regular full length episodes here every Tuesday. I'm Stacey Simms, and until then, be kind to yourself. | |||
| 07 Jun 2016 | Working at NASA with Type 1 Diabetes: Ernesto Prado | 00:55:04 | |
Ernesto Prado always wanted to be an astronaut but when he was diagnosed with type 1 diabetes as a teenager, that dream had to change. He found a way to work in the space program anyway, as a technical project manager at the Johnson Space Center in Houston. He says going to work every day is a dream come true, and he has even bigger goals for his career. Ernesto's journey wasn't easy, his family wanted him to keep diabetes a secret at first, and he had some very bumpy times in college. He shares what helped him get back on track, mistakes he's learned from and why he wants people with diabetes to keep pushing the boundaries of what others think they can do. Our one year anniversary contest continues! Enter to win one of two Pebble Smartwatches at www.diabetes-connections.com. Contest closes on June 12, 2016. Please vote for us in The Podcast Awards! Diabetes Connections made the final 10 shows in the country for the Health category. Voting determines a national winner. Please vote at www.podcastawards.com | |||
| 02 Jul 2019 | From Total Denial to Totally Thriving: Meet Rachel Price | 00:43:39 | |
Diagnosed with T1D in her 20s, Rachel Price admits she was in denial at first, insisting to her doctors there was nothing wrong. Now, she’s an advocate who stays positive but realistic. Rachel has three children and started a business called DiaBeTees selling t-shirts and other products with fun diabetes sayings and catchy slogans. Join the Diabetes Connections Facebook Group! In our Community Connection this week, Dan Haddin is off for Teach for America, but not before creating some fantastic diabetes song parodies. Stacey plays his latest - a funny appeal to Nick Jonas. Click to watch "Diabetic Like You (Sucker Parody)" Sign up for our newsletter here And in Tell Me Something Good, a day camp milestone and a hiker sets out to make his mark. --- 00:00 Tease/Open: What's this week's show about? 1:50 Welcome: Stacey talks about JDRF Children's Congress coming up and talks about CWD Friends for Life later in July as well as her family's plans for the rest of the summer. 5:45 Stacey's interview with Rachel Price 32:40 Community Connection: Hear Dan Haddin's T1D Sucker Parody 36:45 TMSG: Inspired by Isabella: Isa goes to gymnastics day camp, Mike Joyce will hike the Appalachian Trail and Cami is excited (and worried) about her son heading off to college. Learn about Inspired by Isabella Follow Mike's journey on the AT 41:30 Stacey talks about the presentations she's doing at Friends for Life later this month and hints at something new coming up outside the podcast... stay tuned! | |||
| 10 Mar 2020 | Lilly Diabetes Device Update: Connected With Dexcom & More | 00:44:09 | |
Lilly Diabetes announced they were getting into the pump and pen business almost two years ago. How’s it going? We get an update from Marie Schiller, Vice President of Product Development for Connected Care and Insulins at Eli Lilly – Connected Care is what they’re calling this platform of pumps and pens – now to be integrated with Dexcom. Check out Stacey's new book: The World's Worst Diabetes Mom! We’ll also have a bit of an update on some other pump companies’ plans for the near future.. bolus from your phone?! Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript:
Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21 This is diabetes connections with Stacey Simms.
Stacey Simms 0:27 This week, Eli Lilly announced they were getting into the pump and pen business almost two years ago. How's it going? We get an update. And of course I asked about price and access.
Marie Schiller 0:38 Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people act. So
Stacey Simms 0:53 that's Marie Schiller, Vice President of Product Development for connected care and insulins at Lilly We'll also have a bit of an update on some other pump companies plans for the near future. Well, let's sing from your phone in Tell me something good a big fish, a hula hoop winner, and a chance meeting over a foot. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am your host Stacey Simms, so glad to have you along for another week. As always, we aim to educate and inspire by sharing stories of connection. My son was diagnosed 13 years ago with Type One Diabetes. My husband lives with type two. I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I'm excited to catch up with Lilly. I know a lot of people don't want to hear anything from them until they address the price of insulin. And I do understand that I want to be sensitive to that. And I definitely asked Marie all about that. Even though she has nothing to do with the price of insulin but she doesn't work at Lilly and this system. I can't be really separated from that, let's be honest. But I also think I have a responsibility to share what's going on in terms of diabetes technology, and Lilly plans to be a big player in this space. So that's what the interview is all about. We'll be talking about their system. We'll be talking about their partnership with Dexcom and other things as they move forward. Before we get to that, I want to thank Kerri Sparling and the folks at children with diabetes. We replayed the interview that Kerri did with me this was on their YouTube channel and then last week in the kind of the mini episode although it wasn't really a mini we replayed the audio from that interview. It's always a little weird for me to be on the other side of the microphone, but it's always a lot of fun to I bring it up not to hammer on the interview again, if you wanted to see it or listen, you know, you know where to find it and I will link it up in this episode. But because they are doing a contest. The contest is open until March 20. And to enter you do have to email them so I will link that As well, it's over on the children with diabetes a website. But all of these links will be in the episode homepage. They're giving away a paperback of the world's worst diabetes mom and the audio version. So I'd love for you to go and enter and find out more on their websites. Speaking of the book, I am having such a blast on the book tour that I'm doing this year. You know, we'll see how it goes. Obviously there are some health scares out there right now. And I'm not sure that all the events are going to stay as scheduled for right now. They're all on the books that's on the website as well. And if you're interested in the world's worst diabetes mom, that's an easy place to find out more but I have to share with you that I got a great note from a woman in Australia who listens to the show and you know, has read my book she bought it you can get it on Amazon really in so many countries now print on demand is absolutely amazing. And she got it in Australia and she reached out to me because her local group wants to do a bulk order. So we are doing that. And if you have a situation like that where you would like a little large number of books for your group. please reach out to me directly. You don't have to just buy it on Amazon for the full retail price. I am happy to work with you. My publisher has given me some ways to do this. That really makes sense. It's an amazing thing to think about people all over the world reading the world's worst diabetes mom. It didn't say America's worst diabetes mom. So I guess I have to stand by that now. All right. We will have the interview with Marie Shiller from Lilly coming up in just a moment. But first let me tell you about Real Good Foods Diabetes Connections is brought to you by them. Have you tried their cauliflower crust Margarita pizza. They have a full size and a personal size as well. So yummy. It is low carb high protein real simple ingredients. And you know you gotta be careful because some cauliflower crust pizzas are made with corn starch. You know rice flowers, processed grains. And if you're looking for something that is 100% grain free and gluten free, this is what you're looking for. I love how Real Good Foods keeps creating Eating new products, they keep coming out with new yummy foods for us. It's the kind of thing where you as soon as you don't feel like cooking, sometimes you want the convenience. And when you go for convenience, you really don't want to sacrifice nutrition, right? I mean, you don't want to just pull out some junk food. I love Real Good Foods, it tastes terrific. And the people behind them are solid. They get involved in our community. They listen to what we have to say. It's really nice, find out more, go to diabetes, connections comm and click on the Real Good Foods logo.
My guest this week is Marie Schiller Vice President of Product Development for connected care and insolence at Lilly. Two years ago, I was part of a group of writers and reporters from the diabetes community invited to Cambridge, Massachusetts, to take a look at Lilly's entrance into the pump and pen market to give feedback on those plans and to hear from their partners. We did an episode back then and I'll link up what I and others wrote at the time. No pictures still of what they show. Very briefly that day, they showed us kind of the prototype, but it is a tiny pump. It's kind of like a fat little disc. It's much smaller than an omni pod pod. It's maybe about the size of the tee sport that tandem is coming out with. I'm actually going to talk more about that after this interview a pump update from tandem some news from Omni pod. We'll get to that after this interview, but I'll put up some photos of the T sport, but this is thinner than that the Lilly pump is just a small thin disc. It is tubed. So the idea is that you can stick it to your body or use longer tubing and put it in your pocket. We do talk about that. It'll fit in the palm of your hand very easily. Of course we do talk about the price of insulin, and what that means for access of anything coming from Philly. So here's my interview with Marie Schiller. Marie thanks for talking to me. I'm excited to catch up. It's been about almost two years since we've MIT in Cambridge, thanks for coming on the show.
Marie Schiller 7:02 Thanks for having me. I'm excited to be back.
Stacey Simms 7:05 All right, so give us the update. I know we're going to talk about the partnership with Dexcom and some other things that Lilly is working on. But when we last left this episode, the last time we talked at least in person, you over talking about the device that Lilly had been working on, can you give us an update on that
Marie Schiller 7:25 I can and maybe to be helpful Stacy just to remind the audience of what we've been working on. So Lilly has a personalized diabetes management system that is incorporating inform delivery devices, software and analytics. And obviously that will be combined with glucose data and other contextual information in order to hopefully to improve diabetes management. We have two parts of that system. So we obviously have a pen based platform where we'll be using our refill disposable insulin pen, with data coming in from glucose monitoring devices and be able to combine that with different elements of care in that platform. And then the pump based platform, which would be a hybrid closed loop system, integrating the the pump itself in with a continuous glucose monitoring and an algorithm as well. So that's the journey we started on. I think we were we had not just kicked off the program when we last talked a couple years ago, but it was certainly early in the development program. It's been a frankly, an awesome couple of years is advancing both of those areas we had started I know when we last talked, but with the development agreement with Dexcom, which we have continued to advance our relationship with Dexcom and now have entered into a global commercialization agreement with them. We continued our clinical trials with the pump based system we'll be talking about Some of the first clinical data will be shared this coming February at the the conference in Madrid at TCU. And on the connected pen side we have, so we secured a supplemental drug approval for the pen that will be compatible with the personalized diabetes management system. And we're in the midst of working with the FDA on the other components of the system that we will need to bring forward and launch the entirety of that integrated solution.
Stacey Simms 9:35 So there's a lot of moving parts, there are a lot of different things going on. You mentioned the clinical trials, and let's kind of take this step by step. I'm sure you can share the information ahead of the release. But what were you looking for this was for the pump system. Was this a safety trial? Was this an outcome trial? Can you share any information
Marie Schiller 9:55 for you know, I won't go into any details that we will be sharing at the conference, but As has been seen with other products going through on that hybrid closed loop system, we are focused on showing that the system is functioning accurately. So we are looking at that first stage looking at different you know, stress situations with the system making sure the system is responding as we would expect it to respond. And obviously as part of that is the safety of the system.
Stacey Simms 10:27 So, as we're talking about this system, what's so intriguing about it to me is that it is a pump, but it acts more like a pod. At least it did when I last saw it or I saw a mock up of it even so is it still that way it's very teeny tiny, but it it acts as a tube pump with a very small tube that goes into a traditional inset Is that still the hardware?
Marie Schiller 10:47 It is so we what we like to call it is that is a hybrid system meeting on the days that you want to carry it and put it in your pocket or wherever is your choice of carrying it. You could use a standard length infusion set or a long infusion set, whatever your preference, but on days that you wanted to wear it, and adhere it to your body, you could do that. And so it would still work with a standard catheter infusion set, but you would obviously be using a shorter tube in that instance, if you choose to wear it on those days.
Stacey Simms 11:24 You know, it's funny, Marie, I've I didn't ask this when I first saw it two years ago, and I keep thinking about it, because now tandem has a I don't know where they are in their development stage. They have the T sport which sounds very similar that they're hoping to come out with. How do you actually were these tubes, tiny tubes, pumps, the hybrid pumps on the body? Did they just kind of dangle from the tube? Do you stick them to your skin? Does it work?
Marie Schiller 11:47 Yeah, I can't comment on tandem. It's a great question though. Stacey, you know, obviously with our so there's an adhesive component where you are wearing the pump. It's not obviously on the infusion set right? But ours is where you would be adhering to the pump itself.
Stacey Simms 12:04 And my frustration was I thought you're gonna say I can't tell you anything. But that's great. There's like a sticky on the pump and it sticks to your skin. does it stick to the body? Like a? Is it like a Dexcom? sticky? Or is it like the ever since which is more like what I call a color forms? Remember those color forms? You could take them on and off and on and off? Is it more like that? Or is it once it's stuck to your skin? Then you kinda have to pry it off.
Marie Schiller 12:34 Yeah, I may, at this point, just pull back a little bit because I think I may be going down. I may be going down the rabbit hole as if I'm trying. I feel like I'm going to be playing a game of charades as I try to walk you through how the system works. And it may be more confusing than helpful. So yeah, as I mentioned that you have the ability to wear it and there's an adhesive system and we'll leave it at that.
Stacey Simms 12:59 All right. But it's very interesting. So then my next question is, do you know if Lilly is going to be developing new infusion sets? And I asked this because I've shared for years and years, and I'm not the only one, that I really think that the traditional infusion sets are the weak link of any pump. They're just not great. And I'm always hoping that somebody is going to come up with a better one. Any chance, this is part of your plan?
Marie Schiller 13:24 as we've talked about, look, we are looking at all components of the system. Right. And so we are starting with our core system, we're looking at all aspects of the system. I would say, you know, it's hard for me to say yes or no, on that side. I think we're looking at the need in the marketplace. Right. I think on that infusion set side. I'd be curious to sort of hear your experience with that. I think in in some of the research we've seen, it's different sort of aspects where people would say they'd like improvement. Clearly. Extended wear is something that we're hearing a lot I know jdrf and others Groups are focused on that. But what areas are high on your list
Stacey Simms 14:03 that they work better, that that you can push more insulin through them that they don't get kinked and they don't get occluded. And they don't need to know that they're, they're not as damaging to the skin that they're not as painful that I feel I could go on and on. But truly, I really think they're the weak link of pumping and you know that they even what was the one from BD for a while like it had a better flow, it didn't just float the bottom of the canula even to be able to rotate it there was one you used to be able to spin you know, that would go with that would turn you know, there's there's so much so sure, I'll be in a focus group anytime or recall me.
Marie Schiller 14:38 I'm taking furious notes here to make sure I get all of this feedback because this is exactly what we need to hear, you know, and exactly what we're excited about. I think we just continue to feel that there are so much room for improvement on these systems. Albeit we've made a ton of progress today. But these are all of the nuances right then each of us I deal with every day and why, you know, the more innovation the better and space where we can continue to look at all of these elements and make progress.
Stacey Simms 15:09 So let's talk about the pen system too, because that's very useful and very fascinating. The pen is, as you had already said, It is not just an insulin pen, it is part of a connected system. Can you talk a little bit about what that means? We've mentioned Dexcom. already. I assume you use your phone. You can see where you've been it recommends dosing, that kind of thing.
Right back to my talk with Marie but first One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It is sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips. lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to diabetes connections calm and click on the One Drop logo to learn more. Now back to Marie answering my question on what a connected system means and whether the pins help keep track of dosing
as we expect.
Marie Schiller 16:28 It does so as we mentioned, it's based on the the quick pen platform is is a core component of it. So if you look at the quick pen platform that we offer in forums and we have our current basic lar influence and humor log both in the half unit one unit and two units, and then we have our ultra rapid insulin that's under review today. So as in and I don't know what's your son ever on 10 before you move to pump,
Stacey Simms 16:58 he was actually uncertain Because the dosing was so teeny tiny, and they didn't even have half units, but he was on quarter units. But we have since we use pens a lot, because it's a backup for him. If he gets to fly and feels like his infusion set isn't working, he'll take a shot. And he is also a little unusual in that we use. We use a long acting shot with the pump. So he does use a pen every day.
Marie Schiller 17:25 Okay, well, then you're familiar with it. And I can share with you that I was a pumper for years. And now I'm back to two shots, as we all sort of go through those journeys, but what I was going to describe is when you're taking those informs, especially as you know, you're taking the long acting in the short acting. There are just some basic elements that we still don't have today, right? You're running out the door, you're trying to get your son to school or I'm trying to get to work that I did I just take that shot or not again, remember right and just some of the most the simplest aspects of being able to be like up there. If I took that dose, right, and being able to have that check in place, but there are, you know, as you move down that level of sophistication, most people on informer fire some level of glucose testing, whether that is blood glucose monitoring, or as we're doing with the continuous glucose monitors. So the idea is, is that you would have the informed data from the pen, you would have your glucose data, whether that's blood glucose or CGM data, and you would take that in integrate them into this diabetes management system that depending on what you want, is how you would interact with that system. So some would have a preference of saying, you know, when I'm doing okay, or my regimen maybe easier, I don't need as much variation. So, for me, it's a place that I can capture that data and not have to go to different places to get that data for others having some different elements of support in that system. will be beneficial, right? If you think about things on the Faisal influence side for people with type two diabetes faisel, type tration as you get started on the insulin, or maybe after I'm on insulin for a couple years, how do I make sure I'm optimizing? Right? You can go through sort of that journey and see all of these different places where how we can do better than we're doing today. And I'm honing in on the glucose data and the informed data. So we all know I sometimes say life gets in the way right exercise and food you know, all those things that are pretty standard, but for a lot of us can make the road pretty bumpy as we're out there. So you know, over time being able to get the system smarter and smarter with that exercise data and then learning system. So, you know, we all talk about the algorithms that are out today are very much rule based systems right if my glucose is going up by default Like take this action and then be informed is delivered in the future. It may be well for Marie, her level is going up at x rate. And that's, that's not good for Marie versus for Stacey, that might be okay. Because I've trended back and looked at that data and say, you know, we're going to predict that she won't get to an elevated level as an example. Right. So if you start thinking about the personalization of these algorithms over time, it will not be day one, as we all know, it's going to take a lot more research and beta for us to be able to continue to get to that ideal state.
Stacey Simms 20:41 So I'm trying to read between the lines. So the plan sounds like it is to launch with a more let's call it a more static algorithm. Like we just started using control IQ from tandem which is a hybrid closed loop software system. It is a great system for us so far, but it doesn't learn anything. It's probably If This Then That, but it doesn't learn my size. Okay, it's not personalized. So I assuming you're kind of saying that Lilly will launch in a similar way, but the idea would be to eventually get to a learning algorithm.
Marie Schiller 21:11 Yes, I think that's a fair statement.
Stacey Simms 21:14 All right. So let's talk about the announcement that you're gonna be working with Dexcom. Just if you could spend a minute talking about what that means. It's not exclusive as I read the release that y'all sent over. So it sounds pretty interesting. Let's start with what it means first to work with Dexcom are they making? Sometimes there's, I hear special transmitters for certain things, certain software for certain things. Is this a Lilly Dexcom? Original?
Marie Schiller 21:39 no meaning we are basing it off of the transmitter that Dexcom has. So we will be compatible with the G six and we'll continue to work with Dexcom in our development arrangement as they continue to iterate and we continue to iterate to make sure we've got access to each other's latest technologies right because the last thing any of us want to do in these collaborations is to be behind in generation integration, right? I mean, that's what was happening and some of the first generation systems, right, you got people still on, I think it was what g4, and they'd want to be moving to the G six, and there was no way to do those updates, or the G five. So we've established our development, work with them and ability to make sure that we can continue to be running in parallel, as each of our platforms evolve over time. So it will be based on their latest transmitter based on our latest pump in our latest pen, and be able to integrate the the CGM data from Dexcom system into the diabetes management system, where some of the functionality that I talked about before could be available.
Stacey Simms 22:53 So I'm always trying to read between the lines You'll have to forgive me but when I see a press release that says non exclusive, I'm always thinking, you know I don't know of too many, or any pump systems. Gosh, it's so funny to say that Marie, because there's really only a couple in the US. But I don't know if I hear we hear a lot about interoperability, but it isn't here. Yeah. So my question, I guess, is when I see now exclusive, I'm thinking, Okay, are you do you have an eye to working with other CGM companies? And is that practical in the short term? When we all know FDA approvals, things like that, you really kind of have to stick with one system, at least so far, to get it through?
Marie Schiller 23:29 Yeah, you know, it's an interesting way you sort of posed the question, I think, let me say big picture and then sort of dive down to where we are right now. You know, at the end of the day, we believe having access to sort of the latest and greatest technologies is really important, right. I mentioned even with dex comm that we want to be on the same innovation curve that they're on. So people using our system can have access to that. It's really important that all of us, keep pushing For this innovation, right, and the way that you do that is to make sure that I have the ability to integrate other technologies into my system. And I think both of us hold that premise that keeping as a non exclusive allows both of our team to be able to, you know, have access, or have our users of our system have access, I should say to the latest and greatest technology. We have started our program with the XCOM and are really excited about the progress. But we think it's important to make sure that we will have the opportunity to bring different technologies in for different users, even on the systems available today. Right. There are differences in the system, and people are choosing different platforms because of that. Sure.
Stacey Simms 24:51 Yeah, it's really interesting. I mean, I keep hearing about interoperability, which I know is going to come someday but my interpretation of that which is I always call it the Mr. Potato Head. system is not the realistic system. So I try to temper my expectations but why not? Come on? I want to mix and match as much as possible. Why not?
Marie Schiller 25:10 I don't know. Did you like playing Mr. Potato? I was never a huge fan.
Stacey Simms 25:16 It's a it's an easier thing to explain, right? Why can't I use the lead Ray? With the tandem pump? Why can't I use a Dexcom with a barefoot pen? Why can't right i mean if it works better for me and my skin and my kid and my like, why can't I and I, I get it. But at the same time, I really hope that someday we're working towards that, hey, look, it could be worse for you. They could make us play operation or perfection or something terrible like that.
Marie Schiller 25:39 Those are worse. Yeah. But you know it, baby. I think there are a lot of people were having that sort of turnkey solution is, you know, where it's all comes in on and I just understand it and it's all designed to work together. They prefer that and other people would would like that choice, right. So I think we're gonna probably see both of those emerge over time. And the FDA to be fair, has opened the door to that event, right? I mean, they're trying hard to separate the approval of each of the components. We saw that with the ACE ban. We've seen that with IC GM, and now with AI controller that can pass. So, you know, I think, at least from the FDA perspective, they've worked hard to try to enable some of that.
Stacey Simms 26:25 I agree. Alright, so from interpretability. Let's talk about the proprietary aspect of this. Because I think when a company like Lilly, that makes insulin gets involved with the hardware in which the insulin goes, a lot of questions come up, and you mentioned the quick pen. So can you just confirm again and correct me if I'm wrong? Will other insolence be able to be used in either of these systems pen or pump?
Marie Schiller 26:52 Yes. So on the pen side, the system is being built around our quick pen platform. So it will be a system that work with really insulin on the pump side of the equation. In addition, we'll have a first generation that will be a patient built component, but over time, that may shift as well. So on the life cycle plan for that pump, we're looking at the ability to have Lilly insulin in that system, as well.
Stacey Simms 27:27 Okay, so to be clear, and not say, not putting a judgement on this, but just to be clear with the idea is that this would be a proprietary pump, that Lilly would make the pump and Lilly would want its own insulin. We've been human lock used in the pump.
Marie Schiller 27:38 Yeah, I think the system is being designed around Lilly's insulin.
Stacey Simms 27:43 Alright. So you know, we've Marie, we've known each other for a while now and I know you know, this question is coming, but I think it has to be asked in a day and age where people are so angry about the pricing of insulin. Why should we get excited about systems like this when people are worried about But affording the stuff that goes in the hardware, let alone affording the hardware, whatever it is, and how great it is. There's a lot of concerns about cost. I know it's not your department, but I can't have you on and not ask about it. Can you comment on that?
Marie Schiller 28:14 And no and not and I appreciate you asking it. And you have no need for a while as well. So I appreciate the service candid question. Look, you know, and I've said this before, and I'll say it again, you know, we are committed to be able to let people with diabetes, access our medicines, and in the future, disconnected diabetes system that will include sort of the pen based system and the pump and other components. I know you'll be frustrated at this next part of it. But I can't fit here in sort of the position I'm in and where we all want this platform to be any, you know, give you any speculation of the details of how that will happen, or how that reimbursement will be in the marketplace. It just wouldn't be fair to you or your user's to speculate on that, except to say that we are 100% committed to making sure that that access is available. Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people access the system.
Stacey Simms 29:24 And I mentioned in the introduction, but you live with Type One Diabetes, I definitely have another question for you. But it just occurred to me, are you allowed to even say this, have you tried this system? Like, are you in the trial? Can you trial your own? unprepared?
Marie Schiller 29:38 I sure how to answer that. I have no, I'm not in the trial, but I can give you that answer. So I am not in the clinical trials that have occurred today.
Stacey Simms 29:50 I'll tell you as a person who doesn't have diabetes, obviously, you know, it's just something that I always wonder about when I talk to researchers or clinicians or I know there's there's obviously rules for clinical trials. But you've got to think, alright, I want to try this on myself. I know a lot of people have done that. Okay. So the real question I wanted to ask
Marie Schiller 30:05 is okay, I can't wait. I can't wait. That's why there's no, we're pushing hard to justice available. I, I'm waiting, like out there to make sure that I get this.
Stacey Simms 30:18 Alright, so I've got a difficult question. So my real question about living with type one is difficult is it right now to work at Lilly, when people are so angry, and a lot of that is directed? We've seen protests separately headquarters, you know, and again, it's not you, you're not in the price department. Even if there is one. This is not something I know you can control. But is it difficult and frustrating for you to see the problem, frankly, with insulin pricing at all of the insulin companies?
Marie Schiller 30:46 And the answer to that they see and I think we may have talked about this, either the last time on the phone or when I saw you it's like how do you not feel the pain in you know from people, right? I mean, this dishes, dish issues difficult issues people are dealing with. So of course, you know, what I would say is is that worse from, you know, being here? You know, I look at what we're trying to do. And And And again, I'm not the person to sort of comment on this, but it's a priority for Lilly. And I'm really proud that Lilly has made it a priority to make sure that access is there.
Stacey Simms 31:25 Going back to two devices that we've been talking about. I always hate to ask about timelines, but I always have to ask about timelines. Can you give us a goal timeline here? Is there any indication of when it might be submitted to the pen or the pumping, which will kind of go in first?
Marie Schiller 31:42 Yes. So let's talk about the pen first. So as I mentioned, and you can see on the FDA site the supplemental approval for the pen has gone through. We are working with the agency on the other components of the systems. We are not giving an update right now. on the timeline for that system, but we expect to be giving updates over the next couple of months on the pump. As I mentioned, we'll be sharing the first clinical data and our signaling that we're still over the next couple of years hoping to get that system to market
Stacey Simms 32:16 where we thank you so much for joining me. I know it's a difficult conversation to have when you've got, you know, a lot of things about to come out and then other things that I'm asking that aren't really your department. But I appreciate your frankness. Before I let you go as a person who lives with type one, what is it like to work in the diabetes sphere? I mean, I think part of me would be kind of tired, like my whole day is diabetes. My whole life has diabetes, but it's got to be exciting as well. What's
Marie Schiller 32:41 it like? It's an interesting question. For me. I just don't know any different facing effects? The answer is, I don't know my kids would probably answer the same way. I don't know what I would do with myself if I wasn't doing this all day. My weekends are spent so much in the diabetes space as well. It's just something that that is it's just a part of me, right? so much a part of all of us who are living in this space. And I'm impressed every day by all of the people working so hard to make these advancements. And it's amazing, right? As you've seen, we're actually getting some of these solutions out and reading about the improvements that are there. And I'm excited and want to keep staying focused on doing what I can to get these products out and having my team man. I mean, everybody here is just so passionate about what we're trying to do to make these advancements. So it's, um, I know it's a it's like one of those questions someone would ask what would you do if you worked with your spouse? You know? I don't wanna say I love my diabetes so much because I'm not sure I'd answer that way. Am I cursed my diabetes maybe as much as I do other things in life, but it's data reason that probably keeps That's all motivated if we know how much better we can make life.
Stacey Simms 34:03 Well, thank you so much for spending some time with me. I really appreciate and I hope we get a snapshot of the devices soon enough, Marie thanks again.
Announcer 34:15 You're listening to diabetes connections with Stacey Simms.
Stacey Simms 34:21 Of course, more information at diabetes connections.com. I always link up a lot more info at the episode homepage and a transcript. I'll be interested to see how this episode is received. As I mentioned at the start of the show, there are some people who do not want to hear anything from Lilly, if it's not about lowering the price of insulin. And I respect that I hear that I know that there's a lot of anger in our community and a lot of frustration at all the insulin makers and you know, I do share a lot of that, but I would be curious to think if we should not be following the other technology advances that are coming out of these companies, because I'll be honest with you, I said this two years ago, I think Lilly is seeing the writing on the wall. That the price of insulin is going to be mandated to come down in the next few years. And they are, they don't wanna lose money. They want to find other ways to continue to be competitive. And I certainly don't think that insulin will be free. But I do think that going into the pen and pump business is a move on their part with an eye on the price of insulin coming down. Look, I'm not an economist. I'm baby way off base. But that is something that makes sense to me. up next Tell me something good. And then a little bit later on. I want to talk about some other pump companies and news that came out recently, diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I just thought it was something or endo used. You can use it though both on the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. It really helps spinny and me dial back and see longer term trends and helps us not overreact to what happened for just one day or just whenever Our the overlay reports help with context of Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive for managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at diabetes connections dot com and click on the Dexcom logo.
I love the Tell me something good stories this week. Honestly, I love them every week, but I got a bunch that are so fun to share. And one that frankly is pretty important. Alright, so first, Candace says my son was just diagnosed January 23. This year with a hospital stay. By February 13. He was dancing away and winning a hula hoop contest at his first school dance since diagnosis. He's 11 and he was so proud of his accomplishment winning the contest. And we as parents were so happy that his diagnosis wasn't holding him back. That is so cool. I didn't Kansas for a picture shockingly, an 11 year old did not want pictures of him hula hooping to be displayed. I'm actually not sure if she had any, but we respect that we hear it. I just think it's fantastic that he did it and that he's doing so well. This soon after diagnosis way to go Candace! Alison said this is a tiny thing. But today my child was type one went to get her foot x rayed her shirt, rode up and showed her Dexcom and the text said, Hey, do you have diabetes? I do too. Then she pulled out her pump. It was super cool. Allison says her child was diagnosed in early December. I think that's great. Is there anything better than that diabetes in the wild citing, right? You know, you're with people who get it. It's just so great. And then this one you may have seen on social media. I posted a picture of Isabella with her fish, not her pet fish a fish she caught. Isabella is nine years old and she loves fishing with her dad and boy she beaming in this photo with a fish that's like as big as she is. Her mother, Heather says she was diagnosed with type one at age four. Again, she's nine. Heather says, I will tell you this little girl is amazing. Her dad got diagnosed with lupus almost four years ago. He is on dialysis. We are on a kidney transplant list. I'm currently trying to be his donor. And a lot goes into that. This is her and her daddy's favorite thing to do. They live life to the fullest, and nothing stops them. Heather, thank you so much for sharing this story for letting us share the picture of Isabella, you guys are carrying a heavy load right now. And I'm so glad to hear that you're finding enjoyment in things like this. It's kind of trite. As I'm hearing these words, leave my mouth. I mean, there's really not much to say when you're in a situation like that. But I'm happy to share your story. And I hope you keep us posted. Let us know what's going on. And definitely send more fish pictures. I would love to see that I really would even if we don't share them. You can definitely send them our way are posted the Facebook group. Our final Tell me something good is a little bit of a different story. It's more of an news story. But this is really important. And I think very good news. Beyond type one announced that they are collaborating with the National Association of School nurses to raise awareness of the warning signs of type one diabetes. So this is a new collaboration that means that 10s of thousands of school nurses around the country are going to get these awareness materials from beyond type one, if you haven't seen these we did in North Carolina push a few years ago. And they're just simple and straightforward. And they tell you the signs, and they talk about what to look for. I don't think those of us in the community had any idea what DK a was what it looked like, how deadly it could be, you know, before we our children were diagnosed, right? How would you know? So this education campaign is absolutely going to save lives. Huge thanks to be on type one. And a big thanks to the Helmsley Charitable Trust which is funding it. I will keep you posted. I will put up links in the show notes on how you can get involved because you know ordinary people state to state are getting involved. We sit around my dining room table here outside of Charlotte, North Carolina and stuffing envelopes and sent them out really can make a difference. Tell me something good happens every week around here. Give me your stories post in the Facebook group, email me Stacey at diabetes dash connections dot com. I would really love to hear from you. We got to get the good news out in our community. Tell me something good.
All right. We're getting a little long here. But I wanted to bring you some news from the other pump companies. I know I don't usually do a news update this far down in the show, but because I put the coronavirus episode out a little early. There was some news I was going to put into that episode that has gotten pushed here. Let me get right to it. We had an earnings call from tandem. And the really interesting bits from that were that the T sport hybrid patch pump is now expected later this year, possibly probably early 2021. The CEO of tandem says they plan to file with the FDA for t sport approval. This summer with a new mobile app, which means you'll be able to bolus from your smartphone. So apparently, they're going to submit this in two different ways two different filings. One would be a separate handheld device, right like a dummy phone or a dummy controller of some kind that you'd bolus from. I'm dummy and that it doesn't do anything else but control the pump. But the other filing would be remote bulleting by the smartphone app. And apparently the CEO said they will not launch t sport until both have been okayed by the FDA. So you would have the option of using your phone or of using the singular let's call it singular controller rather than the dummy controller. So that's really exciting. I'm gonna post some pictures diabetes mine posted this update and posted some pictures of the tee sport. It is a little patch pump that can be worn on the body or it has a tube so it can be put in your pocket again. I don't know how it sticks to the body. Did you hear me talking to Maria about that? Is it reusable? Like ever since or is it like a dexcom to rip it off or a pumping set. So we'll find out more about these things as they go forward. But that was some really interesting news from tandem. The other bit of news comes from Insulet. They are in the middle of clinical trials for horizon, they had hoped to be filing for that approval. This summer horizon is the hybrid closed loop for the Omni pod. They did have a software issue. That means they are pausing the pivotal study, and it's going to delay things, not really sure how long, of course, they're really hoping that it won't be too long, you know, maybe a month or so. But they are now pushing the anticipated launch of horizon to early 2021. And I know there's a lot of disappointment because people really want this system. I will say to you that tandem had a similar issue with their software during the last pivotal trial for control IQ. It was very quickly fixed. I don't think it affected the timeline that much. Maybe it was just a month, but it still hit its goal of the end of the year. So hopefully Omni pod insolate can get back on this and get back to their timeline but I will link to More information on that, because I know these things just cannot come to market soon enough. tank you for staying with me. This was a long bit after the interview and I appreciate it, but I wanted to get some information out there. I really appreciate you listening. There's a lot going on right now. All right, I'm gonna stop right here and thank my editor John Bukenas from audio editing solutions. If you have an audio project, I highly recommend john, you know, if he puts up with me, and my rambling that he can do wonders for you. All kidding aside, john is great. I love working with him. He never asked me to say anything in the show. But he really is such a strong part of what makes this podcast successful. And boy, is he nice to me and doesn't leave in all of my papers. So thank you, john. And thank you so much for listening. I'm Stacey Simms. I will see you back here next week.
Benny 43:55 Diabetes Connections is a production of Stacey Simms media. All right. reserved all wrongs avenged
Transcribed by https://otter.ai | |||
| 18 Mar 2022 | In the News.. Dexcom G7 approved in Europe, people with diabetes living longer, non-profit insulin and more! | 00:05:52 | |
It’s “In the News…” Got a few minutes? Get caught up! Top stories this week: Dexcom G7 approved in Europe, JDRF speaks out on non-profit insulin plan, Ukraine diabetes aid progress, texting for T2D, Reaction to Pixar's Turning Red Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about DEXCOM*Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
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| 31 May 2016 | CGM in the Cloud Co-Founder Jason Adams | 00:46:30 | |
Jason Adams is the co-founder of CGM in the Cloud, said to be the biggest type 1 diabetes group on Facebook. With more than 18,000 members and still growing, it's a place to share ideas, advice and experience with sending information from Continuous Glucose Monitors into the cloud. In other words, moving the CGM information onto web-based devices so that BG numbers can be viewed remotely in a variety of ways. Adams explains how his daughter's T1D diagnosis led him to become the first non-programmer using Nightscout (the first open source program to "free" the data from a Dexcom CGM) and walks us through the founding of CGM in the Cloud. Adams says he initially expected the group to serve about 15-20 local friends! This episode also kicks off our one year anniversary contest! Enter to win one of two Pebble Smartwatches at www.diabetes-connections.com. Contest closes on June 12, 2016. Please vote for us in The Podcast Awards! Diabetes Connections made the final 10 shows in the country for the Health category. Voting determines a national winner. Please vote at www.podcastawards.com | |||
| 23 Aug 2016 | Miss New Hampshire Caroline Carter: Competing in Miss America with Type 1 Diabetes | 00:42:58 | |
When the Miss America Competition gets underway on September 11, our eyes will be on Miss New Hampshire Caroline Carter. Diagnosed with type 1 diabetes at age 10, her first passions were basketball and theater. Pageants came along later and she found great success, becoming Miss America Outstanding Teen New Hampshire in 2014 and then Miss New Hampshire 2016 in May. Caroline talks to Stacey about wearing her diabetes tech (pump and cgm) during pageants and how she prepares for the long hours and constant travel. She talks about her friendships with Miss America 1999 Nicole Johnson and Miss Idaho 2015 Sierra Sandison, both of whom have T1D. You can vote for Caroline as the People's Choice for the Miss America Competition in the link below. The winner of this voting moves onto the pageant finals. Stacey also shares her advice for parents with children going back to school right now, including a letter/email she sent home to parents when her son was in elementary school. | |||
| 26 May 2020 | "I Tell Them I'm a Cyborg" - Talking To My 15-Year-Old Son About Type 1 Diabetes | 00:52:18 | |
In-depth with a teenager who lives with type 1. Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities. Check out Stacey's new book: The World's Worst Diabetes Mom! Benny answers listener questions and looks back on 13 years of T1D. Join the Diabetes Connections Facebook Group! In TMSG – graduation good news, two popular diabetes books get an update and more This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here The "Pink Panther" Book update ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:20 This is Diabetes Connections with Stacey Simms
Stacey Simms 0:26 this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight.
Benny 0:41 I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach.
Stacey Simms 0:47 We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea? Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast. Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this. Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married. And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us. All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about what they say you need and what you really need. Make it easy With One Drop, they offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes- connections.com and click on the One Drop logo.
My guest this week was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again. So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old. A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone. Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny. Stacey So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd
Benny 7:55 No, it's much better than it was before cuz I'm in range. Like 80% of the day?
Unknown Speaker 8:02 Yeah, it's wild. What have you noticed in terms of me?
Benny 8:06 I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not.
Stacey Simms 8:15 Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of
Benny 8:21 plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows.
Stacey Simms 8:27 But you still do to receive and Control IQ
Benny 8:29 because I like juice.
Stacey Simms 8:31 Cuz you like juice? Yeah. You're an idiot. What?
Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba?
Benny 8:47 I don't know.
Stacey Simms 8:48 Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough.
Benny 9:08 It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one.
Stacey Simms 9:14 And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean,
Benny 9:22 it's better in person. Because that our interests are pretty cool guy. Let's get to the questions
Stacey Simms 9:29 in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic.
Benny 9:38 My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for
Stacey Simms 9:52 life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community.
Benny 10:06 Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that
Stacey Simms 10:30 isn't that funny that we can't get you into a clinical trial?
Benny 10:33 I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome.
Stacey Simms 10:41 But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids
Benny 10:52 said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that.
Stacey Simms 11:02 I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded
Benny 11:36 Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn.
Stacey Simms 11:45 Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way.
Benny 11:55 I just kind of like I need it. Don't touch it.
Stacey Simms 11:58 So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is.
Benny 12:03 Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny.
Stacey Simms 12:20 Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't
Benny 12:25 do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson.
Stacey Simms 12:37 I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year.
Benny 12:49 We have but I wasn't
Stacey Simms 12:50 competing. I know which is why I wasn't which is why it was very easy for me
Benny 12:55 to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart,
Stacey Simms 13:08 she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when
Benny 13:18 I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die.
Stacey Simms 13:39 Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you?
Benny 13:48 I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach.
Stacey Simms 13:57 What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there.
Benny 14:02 I mean, a bunch of them are scared of needles and it's fun to mess around with them but
Stacey Simms 14:07 and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad,
Benny 14:43 if anyone's coming is that
Stacey Simms 14:44 that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever?
Benny 15:08 No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed.
Stacey Simms 15:20 But that was a missed opportunity, my friend.
Unknown Speaker 15:22 Um,
Benny 15:26 I mean, she's pretty good, but
not the best missed opportunity.
Stacey Simms 15:31 Best you ever had. Okay.
Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions.
Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back
Benny 16:52 then? Keep doing what you're doing. You'll be fine.
Stacey Simms 16:56 I think that's an excellent advice.
Benny 16:57 Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best.
Stacey Simms 17:04 I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse,
Benny 17:17 just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh,
Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny.
Stacey Simms 17:39 Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is
Benny 17:43 amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I
Stacey Simms 17:52 smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to
Benny 18:04 tell him I'm a cyborg.
Stacey Simms 18:06 I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So
Benny 18:36 let's talk about that. Then. No. Okay, unless I don't remember.
Stacey Simms 18:40 No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about
Benny 19:38 how your pancreas doesn't work? What if What a nerd
Unknown Speaker 19:42 but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So
Benny 19:52 there's that too modest to ah, am I wrong?
No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name.
Stacey Simms 20:08 Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event.
Unknown Speaker 20:13 Oh, that was that school?
Stacey Simms 20:15 Oh, really? Yes. It was gonna be like one of the beam team. No, that that was
Benny 20:19 that was beam team at school.
Unknown Speaker 20:20 frayed right. I'm saying it was a purpose. Yeah, but I'm okay.
Stacey Simms 20:25 But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way.
Unknown Speaker 20:57 Some of the best. Well, you think you're the
Stacey Simms 20:58 best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way.
Benny 21:27 The lesson from all this tell everyone you have diabetes so you can't get bullied.
Stacey Simms 21:31 Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky.
Benny 21:47 I was cute though.
Stacey Simms 21:49 Hey, let's talk for a second because you're bringing it up. Let's talk about your
Benny 21:54 weight loss lost 50 pounds since the summer 50
Stacey Simms 21:56 pounds which is bananas.
Benny 22:00 Turn on, keep going.
Stacey Simms 22:01 Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way.
Benny 22:19 I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade.
Stacey Simms 22:27 I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried.
Benny 22:33 Yeah,
Stacey Simms 22:34 um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you
Benny 23:26 don't understand. Screaming it's part of the enjoyment.
Stacey Simms 23:28 But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean,
Benny 23:48 he's kilo. 15 pounds to lose.
Stacey Simms 23:49 Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see
Benny 23:53 17 actually. All right.
Stacey Simms 23:54 The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes.
Benny 24:13 Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild.
Stacey Simms 24:20 I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms.
Benny 24:32 Okay, I woke up to my blood sugar.
Stacey Simms 24:33 Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I
Benny 24:39 never once woke up to an alarm. I'm a deep sleeper. When
Stacey Simms 24:45 I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all
Benny 25:04 tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up.
When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits,
Stacey Simms 25:25 that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM.
Benny 25:41 That was scary. wasn't scary how we did it.
Stacey Simms 25:44 Well, you really you think that was scary?
Unknown Speaker 25:46 No, you don't remember it? Yeah.
Stacey Simms 25:48 How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say,
Benny 26:15 so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up.
Stacey Simms 26:35 Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up
Benny 26:40 there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up.
Stacey Simms 26:48 But it didn't go down. Right? It just
Benny 26:50 it was just 60 it was like 60 to 65 the entire week.
Stacey Simms 26:55 Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp.
Benny 28:30 The stories I could tell about the nurses. Well, some interesting ones. There's
Stacey Simms 28:35 a medical staff there but not a diabetes staff. So
Benny 28:38 there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks.
Stacey Simms 28:43 We love Karen. Okay, so the best
Benny 28:45 she's the only Karen I like
Stacey Simms 28:46 no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school,
Benny 29:01 What was her name Miss? Oh, Miss Hyman Simon?
Stacey Simms 29:05 Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that?
Benny 29:51 I remember. Like I was with her all the way to like third grade.
Stacey Simms 29:55 Yeah, well, she left the school it was in
Benny 29:57 first grade to third grade.
Stacey Simms 29:58 Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya,
Unknown Speaker 30:21 like if I Oh, yeah.
Benny 30:24 Um, do you have merge? conflict? The merge?
Stacey Simms 30:26 I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book,
Benny 30:31 Lincoln bio,
Stacey Simms 30:33 Instagram, it's audio.
Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504.
Benny 31:06 I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone.
Stacey Simms 31:13 Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself.
Benny 32:29 I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong.
Unknown Speaker 32:37 Right. me right.
Stacey Simms 32:38 Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up.
Unknown Speaker 32:50 Your teacher didn't believe you.
Benny 32:52 Even after I threw up right in front of her.
Stacey Simms 32:53 Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so
Benny 34:13 normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you.
Stacey Simms 34:31 Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles.
Benny 35:37 Cool.
Stacey Simms 35:38 Well, your elementary school principal was he loved you.
Benny 35:41 I was his favorite. I don't know he was he didn't name favorites, but I was
Stacey Simms 35:44 he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well.
Benny 35:55 He didn't say
Stacey Simms 35:56 he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice.
Benny 36:09 He was the guy that like if you got to go into his office, you were one of the cool kids.
Stacey Simms 36:15 We were very lucky to have a great Elementary School. Okay, and has been principal
Benny 36:19 had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder.
Stacey Simms 36:29 has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it?
Benny 36:33 Yes, yes.
Stacey Simms 36:34 Yes. Ever? Yes. So explain.
Benny 36:37 I don't want to do diabetes. Too much work.
Unknown Speaker 36:39 You get that often.
Benny 36:41 Yes. But how do you deal with it? video games?
Unknown Speaker 36:44 Do you just change the subject? Yeah.
Benny 36:46 I find that most of the time I just go Oh, well. It is what it is.
Stacey Simms 36:50 Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout.
Benny 36:53 Like I have my own opinions about that. I have been able to shoulder shrug a lot of things
Stacey Simms 36:59 like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them?
Benny 37:18 I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is.
Stacey Simms 37:27 All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that?
Benny 37:41 I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math.
Stacey Simms 37:49 Well, your pump requested about three days, but that's when you started because
Benny 37:51 I was like, wait, there's too much math.
Stacey Simms 37:52 Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't
Benny 37:59 ya Yeah, I remember when I was like four.
Stacey Simms 38:04 And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to acknowledge even for a happy kid like us, that was a terrible night.
Benny 38:40 But tomorrow morning, I was fine. The next morning, tomorrow. Ya know why?
Stacey Simms 38:47 But really can do mine. You don't have to share about it. But can you talk a little bit about?
Benny 38:51 I remember one time, like my incident didn't work like three times and then my Dexcom didn't work like twice. I gave up and I was like, I'll do it. The morning
Stacey Simms 39:02 that was the week that you actually met Rodney, the pan guy who we already mentioned him he was the first question dangling. I love Rodney and, and Colt Scott, the American Ninja Warrior dude. So we met them a couple nights later because we were out to dinner and you didn't talk about the night that you were so upset. But I think don't
Benny 39:20 remember what we talked about. I remember is Ronnie eating a lot. And I was. It was really fun.
Didn't barbecue there too.
Yeah. It was a fun night.
Stacey Simms 39:29 Yeah, but I think that just helps to kind of breathe the same air as other people with diabetes. Even though you've had a crummy night, it helps to be with your people because your mommy is helpful, but only to a certain extent. All right, I don't know that you can answer this question, but this is one of the last ones. Okay. How did you realize like, when did you realize you had diabetes? And how did you feel about it? You know, I can't answer that. I just I've just always had it. This mom says I keep wondering for those who are diagnosed early like my daughter with the healthiest way of thinking about it is and how I can help with that.
Benny 39:58 It's life. What are you going to do?
Stacey Simms 40:00 Well, I think a non 15 year old person answering that question a parent might say, I think that there are ways of explaining it that change, because there's different age appropriate ways of talking about it. When Ben he was teeny tiny right after he was diagnosed, my parents got him a Curious George doll, who we'd love Curious George, and he's just not better. Right. And we thought that he would do like imaginative play, right demo demonstrative play right here. I'm gonna give he did not do that with the curious church, but he did. Oh, yeah. And so Elmo got shots. Elmo had juice boxes, Mo got insets
Benny 40:34 mo love juice boxes,
Stacey Simms 40:35 right Elmo love juice boxes. And that's something that helps kids process that they have diabetes when they're very young. And as he got older, we would read stories, we would tell other people, we did a presentation for your class every year that changed as you got older. And then we started talking about age appropriate stuff. So when you're talking about like independence, what has to be done? When you're talking about driving what has to be done right Later, we'll talk about about when you're living by yourself, right? Well think about it as a parent, how much?
Benny 41:04 It's fine. You guys have no responsibilities,
Stacey Simms 41:08 I'm going to touch on driving just a little, because somebody did ask about that. You're doing really well with driving. But you
Benny 41:14 want to talk about what you have to do before you drive. I checked my Dexcom.
Stacey Simms 41:18 And right, that's it, you check your blood sugar. If you're below 80, you can't drive. That's our simple rule. And we have to make sure there's stuff in the car. And I'll be honest with you, I'm going to make sure that you have low stuff in your car for the first year or two because it's just like anything else. You have to learn. You have to get used to it, they'll be independent. So with driving that's, that's I'm terrified, but not really because of diabetes, but you're pretty good driver,
Benny 41:39 the best
Stacey Simms 41:40 and modest to I am honest,
Benny 41:43 like I'm really modest. All right, and then
Stacey Simms 41:44 do you do any diabetes goals in the next couple of years like are there certain now
Unknown Speaker 42:00 You're listening to diabetes connections with Stacey Sims.
Stacey Simms 42:05 See, Why weren't you about how we are to each other, I can't believe I said, I hate you there at the end. Oh, although I gotta say, Oh my goodness, I am going to play a little bit more at the end of the show the very end so you can understand what I was putting up with for a lot of that interview and some of the stuff that we had to take out, but I hope some of that helped you. I'm also going to link up a few of our previous interviews with Benny, I've talked to him a couple of times on the show. And it's interesting. Not only is his voice changed a lot as you can imagine, but just to hear how things have changed. I'll do that at the episode homepage. There is always a transcription. I have no idea what this transcriptions gonna look like the first time I run it through the computer. That's gonna be fun, but we'll put that there as well. And update. Interestingly, after this interview, he really did agree to stop taking the true Seba. So for the first time in almost two years, we started the trustee but in August of 2018, he is not taking long acting With his pump it because his insulin needs have gone down so much, obviously with the weight loss, but also with puberty. He loves what I talked about that, and I'll keep you posted on how that's going. I'll tell you what, so far what he's not eating. It is amazingly steady just like it has him with Control IQ. It's maybe on average, 10 to 15 points lower. So if he was running at like 110, he's now running at 85, that sort of thing, because just that little bit more control of the algorithm is really helping, at least in the short run. But for the last two days, I swear that kid has forgotten to bolus for every single meal, everything he eats. I don't know what's going on. But I'm trying not to make a big deal about it. We're just gonna move on. We're just gonna remind we're not gonna nag. I'm sure he would say something different. All right. Well, anyway, I'll keep you posted on that, but he really is doing great. And I like that he comes on and talks about diabetes, even if it may not be what I want to hear or I want you to hear something. Tell me something good in just a moment, but first Diabetes Connections is brought to you by Dexcom when Benny was very little, and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know exactly what I mean, right? When you've got diabetes and you're checking and checking and checking and poking and poking, when your fingertips get wet, somebody in the community called it Franken fingers. They were just full of little pinprick holes that you could really, really see. And you know, he is 15 I don't see his hands too much. Although I did peek when he was looking at the microphone and hanging out in the studio here, studio. Well, it is a studio, it's my office. I noticed and his endo looks at them every single time we go in that they are just normal. They are not those Franken fingers anymore. I mean, we've been using Dexcom for almost six and a half years now. And with every new iteration, we've done fewer and fewer finger sticks. The G six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day, which is what we did in the past. I mean that was pretty every day makes me so glad that the Dexcom has helped us come so far. It's An incredible tool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week, a quick book update, not my book, but some other terrific books in the diabetes community. And these are books that have been out for a while that are highly recommended. And we all pass them around to each other, but they're getting updates. And I think it's really important because Gosh, think about how much has changed just in the last couple of years. So the first one I want to tell you about is understanding diabetes. This is better known as The Pink Panther book. I still have no idea why the Pink Panther is involved in this. And it's the actual Pink Panther. I mean, they had to have gotten a trademark but if you've seen this book, you know what I'm thinking. This was the first thing I thought when they handed it to me in the hospital. Why is the Pink Panther affiliated here, but that's a mystery for another time, I suppose. Anyway, they're on the 13th edition which you Come get us a discount because the 14th edition is coming out this summer. This is put on by the children's diabetes foundation. I will link this up in the show notes so that you can order a new book, let your endo know as well, if they're interested and it does come in Spanish. It is also available in an ebook form in a Kindle, so you can get them in lots of different ways. The Pink Panther books, the mystery continues though as to why that character How do they get the trademark anyway? All right, the next book is think like a pancreas, which is a must have, in my opinion, A Practical Guide to managing diabetes with insulin. Gary doesn't need my seal of approval here he is already the number one new release in nutrition and medical health sciences on Amazon. But I think this is really important because I recommend this book all the time. And this is the newest update for it. It's a paperback and an E textbook. And as the description says the all in one comprehensive resource for the millions of people living with diabetes who use insulin. The updates here include, as you would expect new medications, new technologies, injection devices, dietary recommendations. We've had Gary on the show many times he describes himself as a human guinea pig, because he lives with type one and he tries all of these devices, but he also talks about the science behind them in ways that I think is really clear. If you've listened to my interviews with Gary, you know, I generally feel kind of like a goofball. When I talk to him, he's very calming as well. If you haven't gotten this book before, highly recommended. If you have and you're looking for the update, probably the textbook is your best bet and I will link that up in the show notes as well. And finally, and tell me something good, lots of graduations to celebrate. Of course they're not the usual graduations people got very creative with how to celebrate their kids this year, but I know a lot of you were hoping for bigger ceremonies and more tradition. I want to take a moment to highlight just one of the many valedictorians that were spotlighted in some of these Facebook groups that I saw Jeremy bright was valedictorian and thank you so much to his parents for letting me share his story. Jeremy was diagnosed with type one at age 14 and he has a scholarship to Florida Polytechnic University to study computer science this fall. And once Jeremy's parents posted about him in this Facebook group, several other people chimed in with my tea Wendy is a valedictorian as well and you know, they kind of went and listed a few other kids didn't get permission to share their names and or their stories and and that's okay, but I think it's great that so many kids are at least getting the credit that they're due for working so hard through high school I don't know about you guys but it seems sometimes that for these kids I know the workload on my daughter High School was almost worse than college maybe it's just the pressure of you know, they have to do so well and I tried to eat that off for my daughter, but man it is hard when all the high schools are telling them you know, take this class get this college credit all these tests AC t sad. Oh, all right, just a little bit of editorial on my part and we shall see Right with all the wackiness that's happening this year with some colleges not you know, counting the standardized tests, we'll see what happens going forward. But anyway, congratulations to these great kids. If you have a Tell me something good story, please let me know you can reach out Stacy at Diabetes connections.com post in the Facebook group, you know, send a carrier pigeon, whatever it takes. I would love to feature your child or you in our Tell me something good segment.
Before I let you go, it's worth noting that we are right at the five year anniversary of the podcast I had Episode 300. A couple weeks ago, I made a bigger deal about that. The five year milestone is something I'm sure I'll mark on social media and talk about a little bit but I'm bringing it up here because well first of all, I can't believe it's been five years. I can't believe that I'm still doing this. I didn't have a timeline in mind when I started the podcast but I don't think I thought five years later I'd still be doing it and loving it as much as I do and it would still be growing but I bring it up because If you're listening to this point in the show, then you are a true listener. And I appreciate that. And I would urge you to please join the Facebook group Diabetes Connections, the group, I'm going to be doing some polling in the next couple of weeks. I'm not sure what we're going to do with the podcast in 2021. And I know it's a little bit early to start thinking about it. But I plan for the next year. I mean, in terms of sponsors, let's be frank, I usually have all that sewn up by August or September. And I don't want to be in a situation where I decide to make some changes. And then I'm scrambling at the end of the year. So I'm going to be asking questions like you know, frequency length, what do you want to hear? I think after five years, it's time to take a tough look at this like a hard look at it and decide what do we really want to do? Where are we going with this right? And if it stays the same, fantastic. I love doing it. But if there's something that you would prefer to hear, you know, maybe it's all technology news, maybe we go once every two weeks, but we only do news updates, that sort of thing. Maybe you really like the personal stories and we stay with that we do a mix. Maybe we make up Longer show a shorter show, you know, there's lots of options. But I want to hear from you. So please watch for surveys over the next couple of weeks. But you got to be in that group. I'm not going to make these public. I don't want people who don't listen weighing in. I mean, come on. And I really can't thank you enough, five years later, to have as much fun as I'm having and to keep doing this and hearing from people who enjoy it. That's the best. Thank you as always, to my editor john Buchanan's from audio editing solutions for making sense of this week's interview and everything else that he does. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 51:41 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Stacey Simms 52:04 You can you can take that to your room when we are done.
Unknown Speaker 52:09 Disgusting.
Unknown Speaker 52:11 No, take it with you Why? And I
Stacey Simms 52:13 have a place to put it or leave it over there because I'm going to throw it away. If I well why would I keep it I take that two places with me like here. Let me interview with a man with a microphone that's been inside my son's mouth. I think you would love it especially in this day and age.
Transcribed by https://otter.ai | |||
| 18 Apr 2017 | Frozen Insulin & Unfinished Business: Roddy Riddle's Epic Arctic Race | 00:54:17 | |
Roddy Riddle recently completed one of the most brutal & extreme races in the world. The 6633 Arctic Ultra is a 350 solo foot race through brutal cold, wind and isolation. Dozens enter and only a few finish ever year. Roddy is the first and only person with type 1 diabetes to enter the race so far, and the first T1D to finish it. He had to withdraw from the race in 2016. He shares why he was so motivated to finish and what he learned from last time around that helped him not only make it all the way, but come in second. In our Community Connection this week, we check back in with the Elbow Bump Kid, Logan Merwin. He's raising money for several diabetes causes, including CWD Friends for Life Conference. His big news? He's got a sponsor! We'll talk about how a race truck team got involved.
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| 14 Jun 2022 | "This is Becoming a Reality" - Sernova's Cell Therapy Approach to a Functional T1D Cure | 00:43:08 | |
Big news from Sernova, one of the companies hoping that implantable stem cells will be a functional cure for diabetes. They recently announced that the first person in their trials with type 1 is completely off injected or infused insulin – and is making their own. Stacey talks to Dr. Philip Toleikis, Sernova’s president and CEO. He explains how their process differs from some of the other companies looking at stem cells, talks about their partnerships and shares more about the patients doing well in this clinical trial. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 30 Jul 2024 | The journey to diabetes independence: when T1D parenting becomes “Customer Support” | 00:26:27 | |
I spent a lot of this summer at diabetes conferences and the top question I got from parents was: how did we make Benny so independent with his T1D? But there are some things I’ve learned that may make it easier for you. I’ll explain my parenting pivot to Customer Support with the release of this excerpt from "Still the World's Worst Diabetes Mom" Find out more about Moms' Night Out - registration is open for Denver and Philadelphia! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections. | |||
| 15 Mar 2022 | A Star Trek Actor's Next Project: Type 1, The Movie | 00:36:57 | |
What happens when the diabetes community and the Star Trek fandom collide? The actor who brought these groups together spent time as a blue-skinned alien on Star Trek Discovery. Now Noah Averbach-Katz wants to make a movie where T1D is front and center. He shares more about the Kickstarter campaign to fund it, and about his time in the Star Trek world This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about DEXCOM*Stacey Simms 0:00 Noah Averbach-Katz 0:45 Stacey Simms 1:10 Noah, thank you so much for joining me, I think this is going to be a lot of Noah Averbach-Katz 5:35 Stacey Simms 5:38 Noah Averbach-Katz 5:48 Stacey Simms 6:14 Noah Averbach-Katz 6:14 Stacey Simms 6:34 Noah Averbach-Katz 6:38 Stacey Simms 6:45 Noah Averbach-Katz 6:53 Stacey Simms 10:20 Noah Averbach-Katz 10:37 Stacey Simms 13:09 Noah Averbach-Katz 13:34 Stacey Simms 15:03 Noah Averbach-Katz 15:33 Stacey Simms 15:43 Noah Averbach-Katz 15:47 Stacey Simms 15:54 Noah Averbach-Katz 16:14 Stacey Simms 16:47 Noah Averbach-Katz 16:50 Stacey Simms 18:14 Noah Averbach-Katz 18:17 Stacey Simms 18:44 Noah Averbach-Katz 18:49 Stacey Simms 18:57 Noah Averbach-Katz 18:59 Stacey Simms 20:13 Noah Averbach-Katz 20:16 Stacey Simms 20:25 Noah Averbach-Katz 20:36 Stacey Simms 22:20 Noah Averbach-Katz 22:55 Stacey Simms 25:24 Noah Averbach-Katz 25:27 Stacey Simms 26:13 Noah Averbach-Katz 26:33 Stacey Simms 29:37 Noah Averbach-Katz 29:49 Stacey Simms 30:35 Noah Averbach-Katz 30:53 Stacey Simms 31:02 I think that's where it is Fingers crossed. I've got it right. There's so much streaming. But back in the day before streaming, and just syndication. I used to watch Star Trek The Next Generation and I started watching it in high school. And I believe it was always in syndication, right wasn't one of those weird shows that didn't really have a network home. It was just syndicated. And it stayed in syndication forever, even after the series finished its run. So when I worked at WSTM, the NBC affiliate in Syracuse, New York, I used to go to bed very early because I had to be up I had to be on the air at five o'clock in the morning. I didn't remember what time I got up to it was even worse than radio because I had to put makeup on and you know, get dressed to look cute. I mean, that was got dressed to radio too. But you don't I mean, it's all different. So I used to go to bed at 730 or eight o'clock. And to Star Trek The Next Generation came on at seven. So I used to watch that most nights. And then when that was over, it was bedtime. And I got into that habit for ever. And then I moved jobs and move cities and you know, it just didn't last and I never picked up on any of the other shows. | |||
| 03 Dec 2021 | In the News.. oral insulin tested for T1D, FDA looks at new tubeless pump, Bigfoot Clinic Hub & more! | 00:06:16 | |
It's "In the News..." the only diabetes newscast. Top stories this week include: #T1D oral insulin study moves ahead, FDA gives breakthrough designation to new SIGI tubeless pump, study shines light on PBM profits, China demands huge drop in insulin prices and Bigfoot Biomedical launches their Clinic Hub -- Join us LIVE every Wednesday at 4:30pm EST Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Episode transcription below: Click here for iPhone Click here for Android
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com. You can also get a big discount right now at diabetes-connections.com – use promo code celebrate to save $4 XX Our top story this week.. More good news for mice.. and maybe some day for people. Yale researchers are looking at an oral medication for type 1 diabetes. These lucky mice had metabolic function restored and inflammation reversed. There are a lot of studies going on to make oral insulin work – liquid insulin is destroyed in the stomach before it hits the bloodstream. This research involves a nanoparticle drug vehicle that can not only bring insulin to the pancreas safely, but the casing itself has therapeutic benefits. It’s made out of an acid that seems to reduce the rogue immune cells that destroy the beta cells in the first place. The team says that the nanoparticles could also be used to carry other molecules, which could help with other conditions. https://newatlas.com/medical/oral-insulin-pill-prevents-type-1-diabetes/ XX A new tubeless pump is making its way through the US regulatory process. The FDA gives breakthrough device designation to AMF Medical’s Sigi (SIG-ee) Insulin Management System. This is a patch pump, like Omnipod, but it’s rechargeable and re-usable – you get two so you don’t have to go without while it’s charging. It’s also an ACE pump, that’s alternate control enabled which means it can interact with CGMs and controller devices like smartphones. This designation isn’t FDA approval, but it should speed up the review. In the press release the company says, “Clinical study data has shown that Sigi™ is delightfully easy to use.” Which is kind of a nice thing to see in a write up like this. XX Big news from the UK this week – they announced everyone in England with type 1 will be eligible for CGMs covered by the National Health Service there. This was preceeded by coverage for the Libre flash glucose monitor. That program was supposed to start at 20% but almost 50% of people with type 1 have opted in and the results in terms of better health and lower a1cs have really been outstanding. Next up, leaders there say they want CGM covered for anyone using insulin, regardless of diabetes type. https://pharmaceutical-journal.com/article/news/nice-proposes-wider-use-of-glucose-monitoring-devices-for-type-1-diabetes XX New research into insulin pricing is shining a light on the middle men.. many of us have known about PBMs for a long time. Researchers at USC found that drugmakers’ share of revenue from insulin sales has dropped in recent years — and a greater share is being siphoned off by pharmacy benefit managers, drugstores, wholesalers and insurers. In 2014, 30% of insulin revenue went to PBMs. By 2018, those same middlemen were receiving 53%. Terrific write up as usual by David Lazurs in the LA Times – he lives with type 1 and I always love his stuff. I’ll link this one up. The researchers here say since the PBMs are getting a greater share, there’s pressure on the drug’s manufacturers to keep raising prices so their own profits don’t suffer. It’s worth noting that these findings were possible because of newer state laws bringing greater transparency to insulin sales. https://www.latimes.com/business/story/2021-11-30/lazarus-healthcare-insulin-prices XX What works to bring down the price of insulin? Ask China. They decided a round of price cuts is due and as a result, 42 insulin products from companies in China and abroad took an average 48% price drop. Otherwise, they wouldn’t have been used in that country’s public hospitals. Lilly gave up the largest discount: After a 75% reduction, the price of Humalog went down to about $3 per pen. China has been making pharma cut prices for the last few years for other medications. This is the first time insulin has really been affected. https://www.fiercepharma.com/pharma-asia/novo-nordisk-sanofi-eli-lilly-cut-insulin-price-china-s-latest-vbp-off-patent-drugs XX Bigfoot releases some information and reaction to their Clinic Hub. This is how endos and clinics use the data from the Bigfoot Unity System to support patients. Unity launched this summer – it’s their smart pen program. When you think about multiple daily injections whether it’s for type 1 or type 2.. it’s hard for health care providers to see what’s going on day to day.. are doses correct, when they’re giving, etc. Unity can also include CGM data. This is the launch phase of Clinic Hub.. Bigfoot says they’ve also added streamlined patient onboarding and more flexibility for patient updates and prescription management. https://www.drugdeliverybusiness.com/bigfoot-biomedical-touts-cloud-based-program-for-managing-diabetes/ XX I’m including the Vertex news here.. we reported this back in October but you probably had everyone you know send you that New York Times article about a cure for type 1 – at least in one guy.. I won’t rehash everything here.. it’s about stem cells, one patient off insulin but on immunosuppressive drugs.. Personally, I’m very hopeful, but the Times write up overly simplified a lot of this, in my opinion. Good write up in Healthline that I’ll link to. https://www.healthline.com/diabetesmine/vertex-type-1-diabetes-research XX In the UK lots of attention on their Strictly Come Dancing competition… when it became apparent contestant Nikita Kuzmin wasn’t hiding the Libra glucose monitor on his arm. He wasn’t hiding much.. he took off his shirt for this performance. Loads of social media comments applauding him.. for both. By the way, his dance partner, Tilly Ramsey is the daughter of professional chef Gordon Ramsey.. and they were eliminated from the show this round. -- quick reminder that the podcast this week is with the UK co-lead on diabetes, Dr Partha Kar. We had a great chat about access and their Libre program and his whole philosophy.. really fun episode. Next week you’ll hear from the folks at ConvaTec, they make almost all the pump insets and they have some great info for us all. you can listen to wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode. That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon. | |||
| 18 Oct 2016 | Glucagon: The Basics & Beyond | 00:50:59 | |
Important information this week about Glucagon, emergency treatment for severe low blood sugar. Stacey talks to Julie Settles, the US Medical Lead for Glucagon at Lilly. We find out more about how Glucagon works, when to use it (and when not to) and what the company is working on to make the delivery easier. Community Connection this week is with James Wedding who convinced an academic summer program to change their Glucagon emergency use policy. Plus, learn about the Big Blue Test from Diabetes Hands Foundation. | |||
| 17 Nov 2023 | In the News... Levemir to be discontinued, Tandem/G7 integration launches, Beta Bionics coverage, and more! | 00:08:10 | |
It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: Novo Nordisk will discontinue Levemir by the end of 2024, Tandem begins limited launch of software updates that will include Dexcom's G7, Beta Bionics iLet pump will be covered until some pharmacy plans, and lots more! Links and transcript below Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark XX This week was World Diabetes Day so there is a LOT going on.. Our top story is XX Novo Nordisk said on Wednesday it would discontinue its long-acting insulin Levemir in the United States, citing manufacturing constraints, reduced patient access and available alternatives. The Danish drugmaker said supply disruptions would start in mid-January, followed by discontinuation of the Levemir injection pen in April and of Levemir vials by the end of 2024. Novo has another long-acting insulin, Tresiba, on the market and says quote - "global manufacturing constraints, significant formulary losses impacting patient access effective in January 2024, and the availability of alternative options in the U.S. market" are key factors in the decision. The announcement comes eight months after Novo said it would cut U.S. list prices for several of its insulin products next year, including a 65% reduction in the list price of Levemir. Novo, which overtook LVMH (LVMH.PA) as Europe's most valuable listed company this year, posted record operating profit for the third quarter, with sales of its obesity drug Wegovy reaching $1.36 billion, up 28% from the previous quarter. https://www.reuters.com/business/healthcare-pharmaceuticals/novo-nordisk-discontinue-levemir-insulin-us-market-2023-11-08/ XX Big news from Tandem Diabetes this week – first, their Control IQ algorithm gets FDA approval for children as young as two years old. the technology’s original 2019 clearance limited its use to those aged 6 and older. And.. they are officially rolling out the software update that will allow users to connect to either the Dexcom G6 or G7 CGM. If you’re in the limited launch you got an email this week telling you the next steps – wider release is expected gradually in the first part of 2024. Integration with Abbot’s FreeStyle Libre is expected very soon as well – which would mean Tandem’s tslim x2 and Mobi pumps would be compatible with three CGMs. Full disclosure: there wasn’t a media release that I received on this, but my son is in the limited launch group so we got the email.
https://www.fiercebiotech.com/medtech/tandem-diabetes-care-cruises-fda-ok-toddler-use-automated-insulin-delivery-algorithm XX Beta Bionics iLet pump and its supplies are now covered as part of some pharmacy benefits - Express Scripts added it to its national formulary list. Historically, insulin pumps fall under the durable medical equipment (DME) insurance benefit. Usually pharmacy benefits are more flexible with fewer up front costs. The system uses an adaptive, closed-loop algorithm that initializes with the user’s body weight and requires no additional insulin dosing parameters. The algorithm removes the need to manually adjust insulin pump therapy settings and variables. iLet simplifies mealtime use by replacing conventional carb counting with its meal announcement feature. This enables users to estimate the amount of carbs in their meal, categorized as “small,” “medium” or “large.” Over time, the algorithm learns to respond to users’ individual insulin needs. https://www.drugdeliverybusiness.com/beta-bionics-pharmacy-benefit-bionic-pancreas/ XX The UK has launched a pioneering study to explore the development of type 1 diabetes in adults which aims to screen 20,000 individuals. Research will enable earlier and safer diagnosis of type 1 diabetes through blood tests. This makes the UK the first country to implement general population screening for type 1 diabetes in both children and adults. The Type 1 Diabetes Risk in Adults (T1DRA) study, launched on World Diabetes Day, seeks to enroll 20,000 adults aged 18 to 70. Supported by The Leona M. and Harry B. Helmsley Charitable Trust and building on the Diabetes UK-funded Bart’s Oxford Family study (BOX), T1DRA aims to unravel the mysteries of adult-onset type 1 diabetes. https://www.diabetes.co.uk/news/2023/nov/groundbreaking-study-to-screen-20000-adults-for-type-1-diabetes.html XX The National Institute for Health and Care Excellence (NICE), England’s cost-effectiveness watchdog, has finalized a draft guidance regarding hybrid closed-loop systems, concluding that the technology should be made broadly affordable and accessible to help people with Type 1 diabetes better manage the condition. In this month’s final draft guidance (PDF), NICE recommended that hybrid closed-loop technology be offered to all people with Type 1 diabetes who are having trouble controlling the condition using their existing devices.
NICE said that it has already devised a five-year rollout plan with the NHS to bring the technology to people with Type 1 diabetes. Hybrid closed-loop systems will be offered first to children, young people, existing insulin pump users and women who are pregnant or planning to become pregnant, after which they’ll be issued to adults who have an average HbA1c reading of at least 7.5%. https://www.fiercebiotech.com/medtech/nice-recommends-hybrid-closed-loop-systems-type-1-diabetes-prompting-praise-medtronic XX
Commercial XX Kyle Banks was diagnosed with type 1 diabetes on November 1, 2015 while performing with the traveling production of Disney’s The Lion King. Performing nightly for sold out audiences across the country was a dream come true, but after experiencing symptoms of the onset of type 1 diabetes, the dream temporarily turned into a nightmare. The symptoms he experienced were typical for the onset of this chronic illness. but with limited knowledge of type 1 diabetes, he had no idea what was occurring or the drastic life change that would soon follow. In 2020, he founded Kyler Cares in partnership with Children’s Hospital New Orleans and has since connected with families from across the country that are living with this disease. Kyler Cares seeks to improve health outcomes for people of color living with diabetes and ensuring families can access the resources and technology available for better management is the route the organization is taking to achieve that goal. At Kyler Cares we’re working to improve health outcomes for people of color living with diabetes by improving access to diabetes technology, creating connections to education and resources, and fostering community as an added system of support on our journeys. Kyler Bear & Friends’ T1 Diaries is an eight-part animated series for kids, dedicated to storytelling about life with Type 1 Diabetes. Our series is more than just an educational tool; it’s a reflection of real-life stories and an avenue to strengthen community ties. It’s a vehicle for us to inspire young people to begin laying a foundation of knowledge and self-confidence with management of T1D that will resonate throughout their lives until a cure for the disease is discovered.
By supporting this series with a donation, you will be contributing to a project that not only educates and informs but also offers comfort and a sense of belonging to kids navigating life with T1D. ‘Kyler Bear’s T1 Diaries’ isn’t just a series; it’s a beacon of hope, a source of information, and a testament to the strength found in our amazing T1D community. Join us in bringing these stories to life XX Married At First Sight UK ends this week, but one bride says viewers haven't seen her whole story.
Fans will find out if Tasha Jay, 25, decides to stay with partner Paul Liba on the Channel 4 show.
But Tasha, who has type 1 diabetes, has spoken out about how footage about her condition didn't make the final cut.
While she's "really sad" that it was left out, Tasha's pleased that people are now realising why she behaved in a certain way on the show at times.
Married at First Sight - or MAFS - is a social experiment where experts match complete strangers who try to live as a couple.
Tasha says her wedding day with Paul on the show was a "really beautiful moment" that included her telling Paul about her diabetes and his reaction.
"I got filmed taking my insulin and checking my blood sugar," she tells BBC Newsbeat.. Tasha was diagnosed at aged two and half and says people have asked why that part of her was hidden in the show.
"And I'm like I didn't hide it," she says.
"For whatever reason they haven't shown it, which really upsets me because diabetes is a part of my story."
Tasha believes that, if people had known about her diabetes, it would have changed their perception of certain moments in the show. | |||
| 02 May 2017 | The iLet Bionic Pancreas: An Update From Ed Damiano | 01:16:15 | |
This week, Ed Damiano talks about his Bionic Pancreas project. Using a pump called the iLet and a Dexcom CGM, the only information the Bionic Pancreas needs is the user's body weight. It adapts to you, no need to figure out insulin to carb ratios or correction factors. The iLet will eventually come to market using both insulin and glucagon, but the first version will be insulin-only. Stacey & Ed talk about the long journey to get to this point, why he had to start a brand new kind of company (Beta Bionics) to help bring the iLet to market and just when he expects it to be available. Stacey also shares some of what she learned at the recent HealthEVoices Conference and talks about the milestone of this episode: It's the 100th regularly scheduled show for Diabetes Connections!
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| 24 Jul 2020 | "I Can't Imagine Any Place More Special" - Diabetes Camp Goes Virtual | 00:35:31 | |
Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind Clara Barton Camp, one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, an Emmy and an incredible story of perseverance and survival around COVID 19. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Follow WMTW News Anchor Cristina Frank Read about COVID 19 survivor Kimberly Ishoy Find out more about NRG Bites! Use promo code "SIMMS" to save 20% ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:17 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:23 This week diabetes camp all right this year is really different. I'm not here to spin it like it's not. But many camps across the country are getting creative, including the people at Clara Barton, who are hosting a virtual experience
Sam Stevens 0:34 that there are kids who look like me sound like me act like me have my shared experiences. Even if we don't get to meet in person. I still know that they exist. I still connect with them. I still make friends.
Stacey Simms 0:50 That's Sam Stevens of volunteer and counselor at Clara Barton. She was diagnosed at age five and basically grew up going in Tell me something good TV me and an incredible story of perseverance and survival around COVID-19. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, I will be so glad to have you won. I'm your host, Stacey Simms. And if you are a longtime listener, you know that I'm a huge fan of camp, diabetes camp for sure. But regular summer camp, you know, any kind of programs that give kids more independence and give parents some time to themselves, which none of us are really having any experience with this, because we're all at home together. But I do love camp and I was so excited to have an opportunity to talk about what diabetes camps are doing in these really difficult times. Both of my children started going to sleepaway camp when they were seven, eight years old Benny started at age seven for a week long diabetes camp, and they were both set at age eight to go To what I call regular camp, a non-diabetes month long program, and I've talked about that in the past a little bit more and in depth about how we did that. But I actually want to talk about my daughter for a second who doesn't live with type one, because the year she was supposed to go for the first time to regular camp, and the youngest you can be for this camp is eight years old and going into third grade, I want to say, but you have to be eight. And it's an option at that age to do a two-week program, which she was all signed up for. But this was in 2009. And if you recall, we had another big flu scare that year, that was H1N1, that was the swine flu. I'm amazed that more people aren't talking about this now. Or maybe we did and we've just moved on because been talking about COVID for so long, but they closed down a lot of programs for H1N1back in 2009. And in our area, certainly here in North Carolina. It was a big fear. Now it passed very quickly. It was nothing like what we're experiencing now. But her camp was canceled, and it was devastating. I mean, she hadn't even been to camp. So she didn't even know what she was missing. But you know, we had signed her up. We had talked about it, you know, what was that experience and both of my kids are super independent. So she knew she was going to really enjoy camp. So as they called it, Swine 09 happened, she still has the T shirt from this camp, they sent everybody who missed camp that year, a T shirt with 09 on the back, my goodness. But it's wild for me to think that she missed her very first year of camp because of it. And Benny is missing his very last year as a camper at this camp. At this age. He's 15. He's going to be a sophomore in high school. That's your last year as a camper, then you can continue on with a special program next summer. And then after that, a counselor and training etc. But she says he's going to do which I think is great. I know there's been a lot of disappointment and events canceled. And this is just one of many, many, many things, but especially with diabetes, right camp is such a big influence on so many people. And I'm thrilled that so many camps are going to try to do it virtually, of course, it's not the same when you're talking about connection. I think it's wonderful. So we'll talk about that in a minute. I have to tell you about something that has been sitting on my desk. Actually, it's a wrapper that's been sitting on my desk to remind me to tell you about this because we hated it a long time ago. But I've been meaning to tell you and this is gonna sound like a commercial and I guess it sort of is, but they're not paying me. But I wanted to tell you about NRG foods, it's the letters N R G. And I'll put a link in the shownotes Chris Ruden, who has been on the show before, tremendous athlete, world record holder. He has a prosthetic arm, you know, I'm talking about and if you don't, I will also link up our past shows with Chris Ruden. He was on the Titan games last year. really remarkable guy. He sent me a bunch of samples of the NRG bytes. Really, they were for Benny, I think he sent us six of different flavors, and Benny only got two because my husband and I got to them first. They're really good. They're a smaller portion size than usual. And of course, that's how they're designed. They didn't want them to be too caloric. They're a size that's designed for, you know, a post workout replenishment. I guess we'll do a post podcast recording replenishment because I didn't work out when I eat them. But I thought they were really good. We've tried a lot of high protein bars in the last couple of years, as Benny has really been experimenting with different things that he likes. He is trying to be much more conscious, not just of carbs. He doesn't eat low carb, but of calories because he has lost some weight and he's doing really well. So the energy bytes, he said, were really good. And his review was, he does think they're too small. This is a 15 year old, but he likes that it has the protein. And he also says he understands he thinks why it's small, because you don't get that protein aftertaste. He says a lot of high protein bars that we've tried just are full of protein and you get this weird, he didn't describe it as chalky, but I would like a weird protein taste. So these are really good. They come in three flavors, peanut butter, cran-almond and chia chocolate and I'm not a big fan of chia. So I was very skeptical, but I didn't taste it. I just tasted the chocolate and I was impressed with that. I do have a promo code for you. I'll link up the website for energy dash foods dot com and if you use the promo code Simms, that’s S I M M S, you will save 20% I told Chris I was going to be talking about it on the show, he offered the promo code. So I just wanted to get it out there and tell you what we thought. It's always really nice when you can support a business that a fellow person in the diabetes community is involved with. So thanks, Chris for sending those all the best with it. And again, all the info in the show notes. Speaking of products owned by a person with diabetes, you know about this right Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that the sleekest looking and most modern meter My family has ever used. And it's not just about the modern meter setup, you can send your readings to the mobile app automatically review your data anytime. Instantly share blood glucose reports with your healthcare team. It works with your Dexcom Fitbit or Apple Watch and they're awesome test strips subscription plan is amazing because many test strips as you need and they'll deliver them to your door did I mentioned the CEO lives with type one, One Drop diabetes care delivered, learn more, go to diabetes. connections calm and click on the One Drop logo.
My guest this week has been going to camp for as long as she can remember, Sam Stevens was diagnosed with type one at age five. She went to diabetes camp that summer and never looked back. This year, she's helping run something completely different, a virtual program for kids at Clara Barton camp and camp Jocelyn, both programs of the Barton center for diabetes education and independent nonprofit. There are a lot of other camps with virtual programs this year, and a few that have gone ahead with their programs in person. Now, I asked about that in the Facebook group, which you should join if you're not already in it's Diabetes Connections the group. So you can find lots of information on camps there and just see what other people are doing around the country. Our diabetes camp program was cancelled this year. But Benny had decided not to go this year, which made me kind of sad he'd been going. He was seven years old. He was set for the regular camp I talked about earlier. And that was scotched as I mentioned that I am excited that the camps are going ahead to at least try to help connect campers with their community. So here's my talk with Sam Stevens. Sam, welcome to the show. I know this is a very different kind of summer. So I appreciate you taking the time to kind of explain things. Thanks for being here. My pleasure. Thanks for having me. Before we jump into what what Barton and so many other diabetes camps are going to look like this summer. Let me just ask you a couple of quick questions about you and your experience because you have been going to diabetes camp, probably for as long as you can remember. Do you actually remember your first summer?
Sam Stevens 8:32 I do. I remember my first day. I remember where my bed was. I remember my trunk that I covered in stickers when I was six years old. And I remember it being the best experience of my life.
Stacey Simms 8:48 You were diagnosed right before you went to camp where you were just five years old when you were diagnosed, and then that was maybe the first summer that you were able to go.
Sam Stevens 8:54 That's exactly right.
Stacey Simms 8:56 Do you remember anything about your diagnosis at that tiny, tiny age? I mean, that's really young. To think back to but I'm curious.
Sam Stevens 9:03 Yeah, I actually, I remember being in the hospital, I remember that there was a fish tank in the hospital and the children that really liked going to. I remember being confused. And then I remember, you know, life obviously being different. But I think, I think in a way, I'm lucky that I got it earlier before I could really remember the stark difference between before having diabetes and after having diabetes. So for me, it's always just been normal life for me.
Stacey Simms 9:40 It does seem to me that going to diabetes camp can make it seem even more normal. I don't have diabetes, but just in my son's experience. It's so nice to be around other people going through the same thing, especially when you're a little kid. Did you know anybody at home who lived with type one, or was it just the summers for you?
Sam Stevens 9:57 It was just the summers. I didn't know Anyone and so exactly like you said, going to camp where everybody just gets it. Everybody just understands what you're going through when you say that you feel low or high you need to eat or can't eat is was so comforting to me and really taught me a lot I learned most of what I know about my diabetes management from camping even from my my friends and community in the years since camp
Stacey Simms 10:31 you I have to tell you I'm struggling a little bit with doing this interview this year because I'm such a big fan of camp and every year we talk about diabetes camp but I always in the back of my mind hope that a parent that has not yet sent their child will listen and feel really comforted and excited about camp and and really make the dive in and and as I'm talking to him thinking, but there is no camp this year. But there is kind of Camp let's let's talk let's try to look on the bright side of this because I know Gosh, so many camps. And people like yourself are working so hard to make sure there is a camp experience. Let's just start and dive right in. What is Barton doing this summer? Tell me about your virtual camp.
Sam Stevens 11:11 Great. So, Barton is running a virtual camp. What happened was a bunch of volunteers or alumni who you know all have been keeping intact, especially since the pandemic started, and a lot of people have sort of reconnected with friends. We all heard that camp was very, very sad, we canceled this year. And because it had such a profound impact on each of our lives, we got together and thought, hey, what can I do to help campers be able to experience that can't magic and not lose out on all of the value that they would without campus?
Stacey Simms 11:54 So this is pretty much a volunteer effort that that came about from from the alumni.
Sam Stevens 11:59 This is 100% volunteer effort sorted by alumni. And this also includes people who would have been counselors or admin staff to so multiple camp generations if you will.
Stacey Simms 12:15 I love it. That's fantastic. So you know, there's not going to be the campfires and the, you know, the bunks and all the stuff that happens in person. I assume it's more than a couple of zoom calls. Can you tell us a little bit about what you're planning?
Sam Stevens 12:29 Definitely. So we actually are going to have campfires and we are going to have cabins and of course they won't be in person. But what we've done is we've created a program where every day for a couple of hours a day, between two hours a day we have various different activities. those activities ranged from your typical, you know, arts and crafts or dance classes and stuff like that. To cabin time where we give you know every all campers have been assigned to cabins, and each of those cabins have dedicated counselor. So the counselors during their cabin times will facilitate definite games and icebreakers and pen pals and things of that nature. And then the third pillar is the all camp activity. So the campfires and the dance nights. And all of our amazing volunteers are recreating each of these programs virtually.
Stacey Simms 13:28 That's so great to hear. What's what is your hope for a new camper, right? Somebody who's seven years old and was just diagnosed or somebody who's 14 years old and doesn't know anybody, what would be your hope for a virtual program for somebody like that? Who doesn't know anybody.
Sam Stevens 13:44 So my hope for a camper who is brand new to camp is that they get that same feeling that I am not alone, that there are kids who look like me sound like me, act like me have my shared experiences Even if we don't, you know, get to meet in person, I still know that they exist, I still connect with them, I still make friends, and have that shared deep commonality of having that this profound thing in common. And I think it's a great way for people to improve their so especially if it's a younger kid or someone who just hasn't gone to camp before they can learn about it, they can experience it virtually. And then oh my gosh, this is how great it is to imagine how fun is this person and also get to experience it. And we're going to have sessions with health care providers, who will be there to answer questions and we do what's called scoop sessions, which it's an acronym for something and honestly, it's been around as a camper, and I have no idea what it stands for, but it's always
Stacey Simms 14:58 great.
Sam Stevens 14:59 I think Maybe someone older and wiser than what it stands for. But that's rare. Health Educator will talk to campers either kind of in a question and answer thing. campers can kind of submit questions anonymously that they might not be comfortable talking about with, you know, a parent or a doctor that they need some more, you know, pure conversations about it can be a nutritionist to help teach carb counting, you know, things of that nature that I think especially for new campers, it just normalizes it, right? If if you just kind of are in your own isolated life, the only real touchpoint you have with your diabetes management is most likely at your doctor's office every couple of months, right? Sometimes people are lucky enough to know other people with type one or go to school with other people. But a lot of times kids are just isolated. So this is a real exposure to the fact that kids are not alone.
Stacey Simms 16:00 And I wonder too, sometimes there's a misperception that diabetes camp is all scoop sessions, right? It's just all diabetes education, you're gonna con gather round kids will sit in a circle and talk about how to change an inset. Yeah, where the opposite is really, really true. I would imagine that even in those sessions, it's more, you know, it's learning in a fun environment. But every diabetes camp is a little bit different. You know, so I assume that the learning experience at Barton is kind of just melded into the camp experience. Has that been your understanding and experience over your time there?
Sam Stevens 16:34 That's exactly right. We, it's it's integrated really organically on a daily basis in the sense that the cabin will do check their blood sugars together and give their insulin together which is constantly an education, educational opportunity for campers, especially those who are less familiar with pre qualifying or carb counting or Doing slight changes, etc. And again, that's just integrated throughout the day. So there's just a constant learning element, as well as the more times that are set aside for doing an education session. And while of course campers are, you know, often like, I don't want to go to school for this class, whatever the the team, you know, works really hard to make it fun. So we always play you know, games like diabetes trivia, or you know, card counting bingo and stuff like that, to really try to make it can't be. Yeah.
Stacey Simms 17:37 So let's talk about your camp experience because you were a very young camper. And you've obviously stayed you, you know, you were very young camper. Then I imagine you're a counselor, you're a volunteer, volunteer lead of this whole thing now. Um, why did you stick around for so long?
Sam Stevens 17:53 The people, it's honestly the people who I've met. They're their family. To me. We always camps family theory. These are people who have mad and grown up with that I literally trust with my life. We will just always be there for each other. And that's all because of camp. I would have never met these people, I would have never learned what everybody has been able to teach me if it weren't for camp.
Stacey Simms 18:22 And I know this year is unique. But is there anything that you'd like parents to know, whether their child is having a virtual session with diabetes camp? I mean, you know, generally, this is the part of the interview where we try to tell parents, it's gonna be okay, drop them off for the week, go on vacation. You know, obviously, none of that is happening. But I'm wondering if you do have a message for parents in this really unique year?
Sam Stevens 18:45 Yeah, I mean, yeah, my message is that first of all, we are just as sad.
Your campers, especially the counselors who were supposed to be staff this summer. I would have been absolutely devastated. I was planning on being a counselor, which was honestly even more fun than being a camper. And I learned that it was canceled. So everybody, you know, everybody's heart is hurting just the same thing, entirely a labor of love. People who I think, you know, similarly to me share the same experience from camp and really care so deeply and truly about it that we want to take the time to give that back and make sure that kids can experience it this summer. This is our first time doing this. I think it's kind of everybody's first time doing this. So it won't be perfect. We will, you know, kind of struggle through things at the beginning. I'm sure. We're all gonna be learning as we go. So, you know, I I asked that to be patient. As you know, this is a process that we're all learning together. But I think that at the end of the day, there will only be a positive experience for kids.
Stacey Simms 20:00 One of the things that my son really learned or at least came home, feeling like he was more confident about at diabetes camp was just meal times. You know, he was young when he started to go. Our sleepaway camp here starts at age seven, I think at the youngest. And he came home much more interested in what are the carbs on my plate, and I'm going to add them up myself and that sort of thing. And I'm sure that virtually things like that are challenged, but are you are you going to be addressing kind of what they're eating? I picture the kids like showing stuff on the screen about
Sam Stevens 20:32
Stacey Simms 21:08 stump the counselors like what do you think this carb count is good? like peanut butter
Unknown Speaker 21:15 Good luck. Exactly.
Stacey Simms 21:19 That's really funny. Those are the experiences that only people with diabetes understand. Right? Those are the things you can kind of only do it diabetes camp. Um, can you tell us a little bit about some of the activities that you have planned? I mean, I'm just because I think it's hard for sometimes people to kind of understand what you see virtually, like, what can What can we do? So can you tell me a little bit about a couple of activities?
Sam Stevens 21:42 Yeah, definitely. So, so to start, each camper is being sent a camp supply pack, which has a couple of different activities that will set them up to be able to participate. So one example is In the arts and crafts, we're going to be building pipe cleaner ninjas. As well as doing the hand model with the, you know, just paper and colored pencils and straws and beads and pipe cleaners that are all being sent to campers right now. We're doing a game one of my favorite games, that's called Dutch auction.
Unknown Speaker 22:27 And the
Sam Stevens 22:30 this whole thing I would actually say kind of originated from Dutch auction, too. Best camp friends put together a group of alumni over Facebook, and said, Hey, does anybody want to play virtual Dutch auction next week? And there was about 20 of us who said, Yeah, let's play. And if you don't know what Dutch auction is, there's a couple ways that you can play it, but the way that we played it is that each round one person would be the judge, and the judge would come up with some sort of object. So it could be a pirate ship, or
something that floats are as kind of esoteric creative, things like that. And everybody gets three minutes to run around their house and create that object. And then everything comes back to the computer and presents what they made. And the judge awards, the you know, the best interpretation of that object, and then that person becomes the the judge. Nice, we had such a blast playing it. And that group of alumni you know, continue to stay connected over Facebook and it was that group that When we all heard thought camp was canceled this year, we got together and said, hey, what can I do? So we definitely wanted to make sure to include Dutch auction and virtual camp because who knows what, you know what genius will will come out of it.
Stacey Simms 24:18 But that's great, because it kind of all started from that idea. Right. You had you had an actual game, and then you wanted to get together and play it online. And then it came from there. I think that's fantastic.
Sam Stevens 24:29 Yeah. And I want to give a shout out to Melissa Moulton and Julia Roboto. Who are the the mothers of this, of this game and this group.
Stacey Simms 24:42 That is great. You know, hopefully, I think we're all keeping our fingers crossed that next year, things will go back to some kind of normal and we'll have you know, regular camps and kids programming and we can just focus on regular old diabetes stuff. I we don't know each other very well, Sam. But I assume that you are a confident and competent adult. You know, who is managing your own type 1 diabetes without your parents calling you every day to say did you bolus I mean, they might check on you, but they're probably not on you as much as they were when you were 567 years old, as much as
Sam Stevens 25:17 their wishes that he could call me every day.
We have we have cut that cord correct.
Stacey Simms 25:25 Listen, as a mom of a kid with type one, I sympathize. I get it. But not to put too fine a point on it or lead you. But it just does seem to me that diabetes camp does help so much in terms of that confidence and independence. Can you just speak a little bit to that before I let you go?
Sam Stevens 25:42 It absolutely does. As I've, as I've touched on. I think there's the two most important parts that have diabetes camp that really help kids with type one develop their their competence is number one. Just the the education part but also the policy of the education part. So just being you know, integrating and making diabetes management such a normal part of day to day and seeing your peers do it with you, they'll get a lot of confidence. And especially working with, with nurses and doctors and nutritionists, and having, being able for kids of all ages to have learning conversations about, Hey, I think I think I need 15 grams of carbs are going low in the afternoon, you know, let's let's work as a team to, you know, change my diesels, those kind of conversations are really great skill building experiences for kids that definitely build a lot of confidence with their diabetes management. And the second part is really the emotional support really giving people The confidence that just because you have diabetes, you are not broken, and you are not alone. There are hundreds of kids like you who all have fun. And all can be, you know, can giggle just as much as a kid without type one diabetes or go to, you know, go to dances and play sports, do arts and crafts, and do you know, all these other things that kids without diabetes do that throughout You know, every other every other month throughout the year, it's really easy to forget. And it's really easy to feel so different and so other eyes. So having that community of peers builds so much confidence on that emotional level.
Stacey Simms 27:44 That's great. And then on the our parting note here, there are a lot of great diabetes camps out there. I will say that my son's is the best. I love the people. It's the best in the entire country. Tell me why Barton is the best
Sam Stevens 27:57 to you. The people People that again I am, I'm a five year old camper who is now a 30 year old volunteer on campus and with me every single year of my life, it has that much of an impact. My, my, my friends have have grown up with me. Throughout all of those years, I'm sure that each diabetes can provide a lot of those really strong friendships, but I just can't imagine any place more special any people more special than Barton.
Stacey Simms 28:38 Well, that's fantastic. I'm so glad you came on. Good luck with the virtual camp. I'm thrilled that you did it. I know. It's gonna mean a lot to the families. So thank you so much, Sam, for coming on.
Sam Stevens 28:48 Thank you so much for having me and I will keep you posted with how everything goes.
Unknown Speaker 28:58 You're listening to Diabetes Connections. With Stacey Simms.
Stacey Simms 29:03 More information about the Barton program, there are different tracks or at least different sessions I should say. So you may still be able to sign up, I will put the information out there. And again, for other camps, please head over to the Facebook group. And you can check out the listing that is community sourced. So if you have some information you can add to that. I really hope these camps go well. I'd love to hear more if your child has participated in one if you're a staffer at one, and let us know you know how they go, is it something you'd continue even after in person stuff can happen again, I think there's going to be some cool programming coming out of this. Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years, but when it hit us at full force a little early. I'm so glad we had Dexcom Benny's insulin needs started going way up around age 11. As I said, He is 15 years old, he is 5’11 at least and that means he's grown like eight inches since he was 11. I mean with all the hormone swings, I can't imagine managing diabetes during this crazy time without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections comm and click on the Dexcom logo.
Alright, tell me something good this week. Christina Frank is a news anchor up in Maine. She does the morning news. Boy I did this for a long time. I don't know how early they get up for television. When I did radio I was out of my house by 330. I had to be there at four to go on at five. So I'm guessing if their show starts at five, they've got to be there earlier because they don't have to just go over everything they're writing and reading but they got all the hair and makeup Well, I gladly gave up. I did do mornings in Syracuse so long time ago. But Okay, back to Christina. So she is in our telling me something good segment because Christina Frank won an Emmy! Her team won an Emmy for best morning newscast in New England. So congratulations to you, Christina. That is just tremendous. Of course, Christina lives with type one. She has a little girl we talked about her baby on the show. She's been on the show. She's just wonderful. So I'm thrilled to just offer my congratulations to what I know is a really, really wonderful accomplishment. Another Tell me something good comes from health line. Now health line is a fabulous news source. I think diabetes, mine is under the Healthline umbrella, but they're an online magazine, whatever you call it, a news source very carefully vetted health information. And this story just was amazing. So this is a woman from Salt Lake City, Utah, who has type one diabetes, multiple sclerosis asthma and is obese and she just survived. COVID-19 like in the house. hospital ICU saying goodbye to her family and made it through. And more McCarthy, who's a good friend of mine, as you know, did an amazing write up for health line. But this is about Kimberly Ishoy. And Kimberly, as I said, has all of those underlying medical conditions. So how do they think she made it through what happened here? Kimberly says, it was a combination of advocating for herself, but also being willing to do whatever the doctors asked her to do. And she and the doctors agree that her very active lifestyle made the difference. She's a distance cycler and she does triathlons. And yeah, she has all of those conditions that I mentioned, including being obese. So how does she do all of that? Well, I think it's all of this misconception that if you're heavy, you can't also be healthy or you can't exercise but Kimberly has been doing the JDRF ride to cure diabetes since 2013. And once she knew she could do that, she says she moved on to five K's and triathlons. It says in the article she usually finishes last. But she finishes. And this is a wonderful quote from Kimberly. I personally think we are all created differently like flowers. She says, I will never be a violet or baby's breath. I am a sunflower a substantial woman. But I also know fat women can ride their bikes 100 miles. So that's something. It's a great article, I will link it up. I thought it was incredibly inspiring. It goes through in detail what happens when you're in the ICU with COVID it's a really terrific write up that way. And I'm thrilled of course that Kimberly is doing well and on the road to recovery. Do you have a Tell me something good story, it can be as simple as a diverse serie something fun with your kids. And this time that we're going through, I think we need all the good news we can get. So let me know and just email me Stacey at Diabetes Connections calm or you can post in the Facebook group but tell me something good. Usually at this time of year, I am getting ready to go to friends for Life, the big conference that happens every year, mid July down in Orlando, sometimes right after the Fourth of July, this year, it is a virtual conference. And we are prepping for that getting ready. Lots of fun things that are going to be online for you to participate in to watch and enjoy from the comfort of your home. I mean, the good news here is that nobody has to travel to Orlando where it's 500 degrees in July. But of course, we're really missing seeing everybody and I think it's going to be pretty bittersweet to do this conference where you know, two to 3000 people get together every summer, but they've done an incredible job of moving it online. I'm really proud and happy to be a supporter. So you will be hearing more on that. Please follow along on social media. I am on Facebook and Twitter and Instagram and on Instagram. It's just Stacey Simms. other platforms have to but I on Instagram, I was late to the party and I don't think there's any reason to have to, and I'm not on tik tok, and I'm not on snapfish So, you know, famous last words maybe by the end of this, stay at home will be on every platform you can find Imagine. Thank you to my editor john Buchanan's from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.
Benny 35:15 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
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| 23 Jul 2021 | In the News.. Oral Meds for T1D, Dexcom API News, Closed Loop and Teens, Olympics and more! | 00:05:40 | |
It's "In the News..." the only LIVE diabetes newscast! Our top stories this week: Oral meds to prevent T1D move ahead, racial disparity in peds CGM use, what that Dexcom API news means, a new study with teens and Control IQ and a summer olympian talks about her recent T1D diagnosis. Join Stacey live on Facebook each Wednesday at 4:30pm EDT! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX Our top story.. A new oral drug to prevent type 1 is moving along in trials. Right now it’s called IMT-002 – and put very simply - it’s meant to block a genetic trait that increases the risk for the disease and is seen in a majority of patients. It’s a new way to think about treating type 1 – phase two studies could start next year. It’s thought that this could help with other auto-immune diseases as well.. the next condition these researchers want to tackle is celiac. XX Could the global rise in diabetes have an environmental component? In an Advances in Pharmacology article, researchers say routine exposure to chemicals that disrupt our endocrine systems play a role in triggering diabetes. These researchers say "We often attribute patient's disease risk to individual choices, and we don't necessarily think about how systems and environments play into disease risk," They go on to say so-called lifestyle factors like exercise and diet fail to fully account for "the dramatic rise and spread" of diabetes. https://www.ehn.org/environmental-factors-of-diabetes-2653768475/how-endocrine-disruptors-contribute-to-diabetes XX A new study shows Black children less likely to start or continue with a CGM after a type 1 diabetes diagnosis. These researchers at Children’s Hospital of Philadelphia or CHOP as it’s commonly known, show that a racial-ethnic disparity in CGM use begins within the first of year after diagnosis. White children were more than two and a half times more likely to start CGM compared with Black children and twice as likely to start CGM compared with Hispanic children. There was a disparity even when broken down by types of insurance – commercial or government. These researchers say social determinants including structural racism, are likely playing a role in disparities in care and outcomes https://www.healio.com/news/endocrinology/20210719/black-children-less-likely-to-start-continue-cgm-after-type-1-diabetes-diagnosis XX Very large survey of women shows that half of those with type 1 or type 2 diabetes are not getting pre-pregnancy counseling. This study included more than 100-thousand women. Right now guidelines from many groups including the CDC and American Diabetes Association recommend providers offer women with diabetes health counseling before pregnancy to cut down on the increased maternal and infant risk associated with both conditions. These researchers hope to develop better tools for women & their doctors. https://publichealth.berkeley.edu/news-media/research-highlights/women-with-diabetes-and-hypertension-dont-receive-pre-pregnancy-counseling/ XX Big increase for time in range when kids use hybrid closed loop systems. We’ve heard about a lot of improvement, but in this study, the percentage of kids and teens with t1d spending at least 70% time in range… more than doubled after 3 months of using Tandem’s Control IQ system. This was a study of about 200 kids, median age was 14, and it was a real world study – where the kids went about their lives, not in a clinical setting, and the researchers pulled the data electronically. Interestingly, sleep mode use increased through 6 months, while the exercise mode was used less over time. Kids with an A1C over 9 saw the most improvement. Those with an A1C under 7 didn’t see much of a change. XX Dexcom gets FDA clearance for real time APIs.. what does that mean? Third party companies like Fitbit or Sugarmate which have long integrated Dexcom data have been doing so on a bit of a delay. Now they can do so in real time. API stands for Application Programming Interface, which is a software intermediary that allows two applications to talk to each other. Dexcom’s Partner Web APIs will allow users to view all of their diabetes care data in one place to enable in-the-moment feedback and adjustments, the company said in the announcement.
https://www.mobihealthnews.com/news/dexcom-gets-fda-nod-its-new-api-integration
XX Cool new exhibit at Banting House – recent guests of the podcast and museum celebrating the birthplace of insulin. They’re set to open up again this week – the first time since March 2020 – and there’s a new computer generated exhibit. It does work outside.. In the square where Dr. Banting’s statue stands. Giving visitors a virtual glimpse at the life and work of the man credited for the discovery of insulin. If you haven’t visited – it’s in Canada – or seen the museum, I highly recommend a spin around the website, we’ll link it up. XX Summer Olympics are kicking off and by now you’ve probably heard that American trampoline gymnast Charlotte Drury was just recently diagnosed. She found out she had type 1 weeks before the 2021 Olympic qualifying trials, she revealed on Instagram last week. she and her coach pressed on and she basically got back into things within three weeks. She posted this photo of herself wearing the Dexcom. Drury is the first American woman to win a gold medal in trampoline at a World Cup That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – I’ll share my conversation with Gold Medal Olympian Gary Hall Jr – when he was diagnosed in 1999 he was told to give up swimming. He didn’t and he talks about why.. and how he overcame what was conventional wisdom for athletes at the time. This week’s show is the story of Jack Tierney, diagnosed in 1959 with type 1 he’s 81 and he says he’s never felt better. Thanks and I’ll see you soon | |||
| 25 Sep 2018 | Mike Lawson - Open Up Your Bag (Zip Zip Zip)! | 00:47:04 | |
"Open Up Your Bag" is a new children’s picture book about diabetes. The story behind it takes us into a great conversation with the author Mike Lawson. Mike was diagnosed as a young adult (after initially being misdiagnosed as type 2) and he shares stories about finding the diabetes community, getting involved in organizations like TuDiabetes.Org and Diabetes Hands Foundation and what led him to write the book and start Diabetes Doodles Plus, a new resource for our community is now available in audio form. Listen to a bit of Bright Spots and Landmines, a diabetes guide by DiaTribe's Adam Brown Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! You can get Bright Spots and Landmines by using this link. Learn more about A Bad Case and listen to our previous interview with Erin Spineto
2:00 Stacey Welcome - Hurricane Florence update and "A Bad Case" is being released 5:20 Interview with Mike Lawson 36:30 Stacey talks about Big Blue Test (watch here) 38:00 Audio samples from Bright Spots & Land Mines 43:30 Stacey talks about Chia Pudding - it needs a new name!!
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| 06 Jun 2017 | Bike Beyond, A Cross Country T1D Adventure | 00:50:03 | |
This summer, 20 people with type 1 diabetes will make an incredible journey. From June 3 to August 11, Team Bike Beyond is crossing the USA, cycling from New York to California. This week, meet the man who asked Beyond Type 1 to take a chance on the event, and the woman who said yes. Stacey talks with cyclist Walt Drennan and Beyond Type 1 CEO Sarah Lucas about how the idea for the trip came about, the work that went into launching the ride and what they hope to accomplish along the way. Each week during Bike Beyond, Diabetes Connections will bring you stories from the ride and profile a different cyclist. They're not professionals, just people with type 1 who wanted to take an extraordinary challenge. (There are actually 20 riders and one D-Mom along on this journey). Stacey also shares a bit about the end of the school year & how the first year of middle school went for her son. Plus, we talk about the summer diabetes conferences on the calendar like ADA, Friends for Life & AADE. Get the app and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Sign up for our newsletter here As always, thanks for listening!! | |||
| 30 May 2019 | All About CGMs - Full Interview with CDE Gary Scheiner (Bonus Episode) | 00:46:27 | |
Get the most out of your Continuous Glucose Monitor. Certified Diabetes Educator Gary Scheiner joins Stacey to talk about all the CGMs available in the United States. An excerpt of this interview ran in episode 229. We go further in depth on more issues around CGM and discuss more advice. Join the Diabetes Connections Facebook Group! Gary is the founder of Integrated Diabetes Services, the author of many books including, Think Like A Pancreas and was the 2014 AADE CDE of the Year. This is the full interview with Gary. You can find an excerpt in the previous episode. Here's Gary's formula for getting your A1C and beating your endo at the bet he jokes about. Start with your CGM average glucose for 30 days. Multiply by 1.03. Then add 46.7. Then divide by 28.7 to get your A1C. To do the reverse and find out your estimated average glucose, The American Diabetes Association has a handy A1c-to-eAG calculator: https://professional.diabetes.org/diapro/glucose_calc
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| 22 Sep 2015 | The Do It Yourself Pancreas Project - Dana Lewis & Scott Leibrand #DIYPS | 00:47:07 | |
Worried about alarms she couldn't hear, Dana Lewis and Scott Leibrand "hacked" into the programming of her CGM. What they learned led them to a do-it-yourself closed loop artificial pancreas system that Dana has been using since December 2014 (and which she wore during their wedding in August). We find out how they did it, why they make their methods public and what it may mean for the future of diabetes management. In the Community Connection segment, we hear about LADA (Latent Autoimmune Diabetes in Adults). | |||
| 06 Jan 2023 | In the News... More T2D predicted, Basal-only pump planned, Glucagon discontinued.. and more! | 00:06:22 | |
It’s In the News, a look at the top stories from the diabetes community from the last seven days. This week: predictions of a huge increases in cases of type 2, insulin prices are capped for those with Medicare, Omnipod commits to a basal-only pump for people with type 2, and more! In the news is brought to you by Athletic Greens! Find out more: https://athleticgreens.com/stacey Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible!
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. https://www.wibw.com/2023/01/03/cdc-predicts-huge-spike-diabetes-among-young-adults-next-40-years/ XX | |||
| 28 Jan 2020 | DiabetesWise - A Consumer Reports for Diabetes Technology | 00:43:26 | |
Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware. Check out Stacey's new book: The World's Worst Diabetes Mom! Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and why it’s needed. Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here. Join the Diabetes Connections Facebook Group! In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation)
Stacey Simms 0:00 Diabetes Connections is brought to you by one drop treated for people with diabetes by people who have diabetes, and by dexcom, take control of your diabetes and live life to the fullest with dexcom.
Announcer 0:17 This is Diabetes Connections with Stacey Sims.
Stacey Simms 0:23 This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware,
Korey Hood 0:38 there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships,
Stacey Simms 0:56 that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes. But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.” “But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.” It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth. Alright, so DiabetesWise coming up in just a moment. But first, Diabetes Connections is brought to you by One Drop and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the slickest looking at most modern meter My family has ever used. It's not just about the modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo.
My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise?
Korey Hood 6:30 Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half.
Stacey Simms 7:45 Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me?
Laurel Koester 8:03 Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story.
Stacey Simms 9:40 And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there.
Korey Hood 10:19 Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with.
Stacey Simms 11:56 Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose?
Korey Hood 12:17 Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices.
Stacey Simms 13:27 Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit?
Laurel Koester 13:33 Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management.
Stacey Simms 16:22 Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump?
Korey Hood 16:33 I do. Okay, yeah. So you probably too many of them.
Stacey Simms 16:36 Wait a minute. So tell us how many are you wearing at the moment?
Korey Hood 16:40 Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there.
Stacey Simms 16:45 That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with?
Korey Hood 17:05 Yeah, I think it's a great question. And I think it's something that
there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was
I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family.
Stacey Simms 19:59 Our experience was, was not exactly similar and choosing an insulin pump in that we were given a lot of choices. And at the time, back in 2006, there were actually more pumps on the market, which is kind of sad to think about. And we chose the Animas 2020. Because I felt like of all of the devices that I was shown, it kind of seemed the easiest. I said to my educator, I really said, I need devices, including pump insets. And everything else. I need the the Venn diagram of idiot proof, and does really good does what it's supposed to do with diabetes, because I really was so overwhelmed. And that's what we wound up with. And as Benny got older, and you know, every four years you're changing and making decisions. We stayed with a two pump. We now use the tandem. One of the reasons we stayed with it is because my son is very responsible, great kid does well loses everything. And we felt the Omnipod PDM would be gone in about 30 seconds, but I'm curious. So when you go through the quiz Your pump and sensor and that kind of thing. What kind of questions are you asking? I mean, I should have taken the quiz before I talked to you, sorry. But I'm wondering like, do you want everything attached to your body? So you don't lose it? If that's one of your questions, or if that's, and I'm laughing, but you know, you understand I'm saying that's one of the No, absolutely, yeah, form factor or your lifestyle factor?
Korey Hood 21:22 Absolutely. And I think you raised a really good point about that. The systems that that work well, and are easy to use, have been designed with the person in mind. They've been designed to be, you know, to have the form factor, like you mentioned, but the user experience is something that is positive. And I don't think that all of them are designed and created equally, in that in that sphere. And so I think that, this really great examples of that, and I would say that the tandem is one of those that has You know, and using use an interface that especially for anybody who's been diagnosed in the last few years, you know, that's that's what they're used to in terms of touchscreen. And so with that said, it's a good question about the quiz and one of the things that we did just quickly give you a little bit of history of it. So, in our we did a lot of work serving over 1500 adults with type one 700 adolescents, 700 parents of kids with with type one, to really understand what are the main questions that we need to ask people so that we can put them on the right path toward, you know, an experience where they become more aware about devices and then also maybe matches better to what their lifestyle is. And so we were able to take hundreds of questions and and derive a quiz that have five questions in it. And a part of those questions is about the level of distress and burden that they perceive about that. BTS because we found that that's a really critical factor in making sure that people get the right kind of information about using devices. But we also ask them what their priorities are, what are their concerns? And what are their main ones. And although we don't specifically phrase it, the way that you mentioned, it is that we, we get it, we get at a number of different priorities that people have. And then that starts them on this path. And then because of the way that it's framed, and as Laurel said, around the algorithm, that it will then take people to, based on their responses that will take them to individual stories of others who have those same concerns or same priorities. But then when it one of the parts that's not live on the website, yet, is a device readiness tour device Finder. And so in there, you can drill down a lot more deeply about what your priorities are, and so For example, if someone really wants it to be discreet, if someone wants it really ease of use ease of use as one of the ones that we have in there as a priority, if someone really wants to avoid fingerstick there's all of this that you can tailor the advice or the recommendations that you're going to get based on what your priorities are. So that's great for people who have some idea of what it is, but it's also great for people who are just trying to get a sense of I'm not even sure what my priority is. I'm not even sure what I want out of this so you can learn about it as well in the process.
Stacey Simms 24:34 Alright, so I'm looking at the website, and I know that as you said, more is coming. But it does say there's stuff about pump and smart pump. There were only three pumps in the US as far as I know right now. Which ones are the smart pumps? to dump I'm sorry.
Korey Hood 24:50 Right? Exactly. I there was something funny there that I couldn't quite come up with but I do agree with you that it what we found and said this is Why is it so important to ask people and involve them in in user testing and development? One of the things we found were that people really wanted to distinguish between something you just put on your body that administers insulin that doesn't make doesn't have any kind of alteration or it doesn't change what it's doing based on anything else. And so, you program a pump and they're, they're, you know, they're sophisticated for, say, 1995. They haven't evolved a lot. But they, they still do a great job and are reliable and precise. With what's what we wanted to distinguish is this idea that a pumpkin do something like low low glucose suspend or can be part of a larger closed loop system. And so the smart pump idea really came from what we heard from people and although it's not a, you know, an FDA category of devices, we really heard from people that they wanted to that distinguish between kind of the traditional way that you would pump versus something that has the capability to be within a closed system or to have low glucose suspend. So that was really the distinction there.
Stacey Simms 26:11 Got it. So in other words, if you use an Omnipod on its own, that's a pump. But if you use an Omnipod as part of the non FDA approved loop with a Riley link, now you have a smart pump.
Unknown Speaker 26:26 Exactly. Okay.
Unknown Speaker 26:27 Let me ask you. We talked
Stacey Simms 26:29 about this at the very beginning that one of the things that makes DiabetesWise unique and very, very helpful is that it is not put out by a company with a stake in what device people
Unknown Speaker 26:41 choose. The
Stacey Simms 26:44 Helmsley charitable trust I think many people are familiar with is so much of what it has done for diabetes research and funding and grants. And we've talked to some folks from the homestay family on the show in the past. What was the purpose here? You know why did Helmsley want to get into involved, it seems really obvious, because you're helping people. But I just wanted to ask you about the involvement here.
Laurel Koester 27:08 Yeah, absolutely. Well, I think they see the point that you raised about the the fact that we are an independent entity really speaks to kind of the trust factor not only in you know, what Helmsley because we don't have a financial stake in this. But we're also partnering with some of the leading diabetes researchers in the field at Stanford University. So we really want to ensure that that we're supporting information that is unbranded and unbiased and that people can trust. And I think, again, to underscore that this website is really informed by People living with diabetes is their voices. And, you know, for example, one of the tools that Korey mentioned of this device readiness tool, some of the research that's going into that is, you know, from a sample of people with diabetes, so when people see, you know, different priorities and, you know, writing, as you know, kind of just a sneak peek into some of the features that are going to be coming out, those are actually based on input from people living with diabetes, who are using diabetes was for the first time so it's a really unfiltered real deal.
Stacey Simms 28:44 Cory, what's your hope for this? Do you do you hope that like a CDE would say, hey, let's sit down together go through the quiz on DiabetesWise, or is it a question of people just kind of seeking a little bit more, or even people. What I find fantastic about this is that you have empty I'm on here as well, you're not assuming everybody wants an insulin pump, some curious what your hope is going forward?
Korey Hood 29:07 It's a great question. And I think that the ultimately what we want to do is we want to be able to match the device with the person and their lifestyle and their interests and their priorities. And, and I think one way to do that is that we traditionally don't do a lot of in clinical care is to spend more time objectively figuring out what's what's going to be the best fit, because clinics are busy, providers are busy, it's hard to get that dialed down really closely. And so my goal really is to get the right one for the person and so it's not a one size fits all approach. And if people are using multiple daily injections, and using a meter, you know, I could argue most of the time that you know, add a CGM add dilib re add something that will give you a little bit more glucose information to dial it in. So there's Maybe a little bit of room, but if you don't want to move, and you are really happy with it, then maybe there's some other some areas of distress related to diabetes that we've learned about in this process that we can help you with. And so, you know, I, it's, it's really intended to be a resource that can match and fit with anybody's interested in what they want to do around devices. But also, you know, at a minimum, you know, it educates the person about it, it also can be a resource that like you said, CDs could use one of the things that we found really helpful is we went to a D over the summer and in August and Houston and one of the things that we learned and, and talk a lot about with CDs was, you know, how this could be a helpful tool for them. And so that's another thing that's in process is making sure that we have something that is that can be used by them in a in a helpful way so that they can also get people on the right devices. I mean, I think that everybody If you get the right device on somebody, and they use it effectively, everybody, when there's less time and involved in on the clinical side, they're better outcomes. The person's happier. I think that there's just so many reasons that we want to do this. And then the other vision for this is that we keep it completely free, that we keep it disconnected from are not connected, not tethered to any kind of device manufacturers, we need them, they have to be part of this. And they're doing great work. But we don't want to be as Laurel said, we're not you know, we don't want to be biased or branded in any way we want it to be free and an objective tool for people to use.
Stacey Simms 31:43 I'm curious, what do you mean by you need them for this?
Korey Hood 31:48 Well, I mean, I think that we don't necessarily, we don't necessarily need them for DiabetesWise, although, I mean, you could argue that, you know, we wouldn't have DiabetesWise if we didn't have devices, but that's Maybe getting a little
Stacey Simms 32:02 device.
Korey Hood 32:04 Right, exactly. But But I think what I think I'm just noting that we need for I think the person with diabetes, to have the best chance of the best outcomes we need device companies who are pushing the edge and who, who are, you know, are the competition is a healthy competition. And so I think it's good that they all exist and that they do the work. We just don't want them. We don't want people with diabetes to feel like they have to go to a certain device. And so that's why we we created this so that they could have a more
you know, unbiased view of what's available.
Stacey Simms 32:47 I just didn't want to make sure I just wanted to make sure I didn't misunderstand there that you didn't need them. In other words to give permission to recommend or that they had to somehow sign off on DiabetesWise.
Korey Hood 32:58 Right, right. Okay. There we go. We, you know, if if we want to, we want to work with them on this and make sure that we have accurate information. But ultimately, this is driven by us and our team and our collaborations. And so if there's something on there, that isn't that they don't like then or a story that someone bashes their device, and it's still going to be on the website. But it's also that we we appreciate that they've done a lot of work to bring us to this place where we can actually have these discussions and we can actually have options.
Stacey Simms 33:35 Yeah, it's interesting. I mean, I mentioned when Benny was diagnosed, there were more pumps on the market. And while there are fewer now at least the technology is improving. Before I let you go, Cory, could you speak just for a moment about where it's been for you? And you know, where you are looking for to go in the next couple of years?
Korey Hood 33:54 Yeah, you know, I think that I mean, I've been it's a little bit of background I've been using For over, I think two and a half years now and, and I've found a great deal of benefit from it mainly on glucose control, but also in on the mental side and having longer chunks of time throughout the day where I don't think about diabetes, which is really nice. So I, for me, I've been really happy with the progression, it's not perfect, and there are still pieces, you know, multiple pieces you have to wear, we still have to, you know, stab ourselves with sharp pieces of metal. So there are a lot of these things that aren't going to go away and I don't think are going to go away anytime soon. But I do think that the ability to put something on and to not pay much attention to it for a few days is we're close to that. And I think that that's what is really appealing. For me and I think for others that we talked to is that if we do Just continue to decrease the amount of time that people have to think about it, and they feel safe, and feel like it's reliable. And that's really what we're aiming for. And I really do think that that's where we're moving in the next few years.
Stacey Simms 35:12 Laura, let me give you kind of the last word here, you know, what are your hopes for DiabetesWise and how it helps people
Laurel Koester 35:19 just positing said, That's quite a big question. You know, I hope. I think from the homepage standpoint, we want to make the information about diabetes devices and technology is available to everyone living with diabetes, you know, no matter where they live in the US, you know, um, you know, a lot of times just information isn't accessible for people and we want to make sure it's a trusted source of information. And you know, if someone lives in rural America, for example, and they don't have access to support CT groups or an endocrinologist that they can still connect with people like them to learn about the different technologies and devices and experiences of people that are navigating there. They're the same disease.
Stacey Simms 36:18 I'm thrilled that this is available. I really wish it was around when we were choosing our devices, because it was a little bit like throwing darts at a dartboard. Luckily it worked out. Okay. But Korey and Laurel, thank you so much for joining me. I really appreciate your time.
Unknown Speaker 36:38 You're listening to Diabetes Connections with Stacey Sims.
Stacey Simms 36:44 More info about DiabetesWise on the episode homepage and of course, the link is there to go ahead and take the quiz and tool around on their site and see what you think. Up next. What Marco Polo has to do with type one that's in our Tell me something good, but first Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow. As a caregiver, a parent a spouse, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up is required. You can learn more just go to diabetes, connections dot com and click on the Dexcom logo.
It is time for Tell me something good. And this one made me smile when I read it. Oh my goodness. So Rachel shared a story: “We were at Target today and my son's low alert on Dexcom went off and we heard in the distance, ‘T1 I hear you – Marco’ my boy lit up. ‘Yes, you do T1 – Polo!’ and another kid pops up out of breath. And the two of them just chat for a few minutes about Legos or with with everything in common. I melted.” So how about that? I mean, we've heard some Dexcom alerts or seen somebody checking their blood sugar. And of course, I want to run over. And how are you and what are you doing here? But I don't I try to contain myself. But every once in a while, I'll say something. But I can honestly say it has never occurred to me to yell Marco, and hope to hear back a Polo. Dexcom alert. So kudos to these kids. And Rachel, thanks for letting us know about it. any follow up? You have we would love to find out. I mean, I can see her son doing this again, and maybe they became friends. I don't know. But I thought it was a really cute story. And if you try it, and it works, let me know. I think the closest we ever came was interestingly enough at a hotel pool speaking of Marco Polo, this years ago, we took a road trip to Chicago. That's a story in and of itself. We took an RV from Charlotte to Chicago. And we did six states and five days to go see Syracuse play in the NCAA Tournament. Anyway, long story short, we did not bring the RV actually into Chicago, it would have been very expensive to do that. So rather than you know, pay a lot and find a place to park it, we parked our RV at my husband's friend's funeral home in Skokie, outside of the city, but that's not what I wanted to tell you about. Um, so we're at the hotel pool. And we look over and there's a little girl with the Dexcom and Omnipod on the backs of her arms. And of course, Benny at that age, was willing to go say hi, be social. So he did and we struck up a whole conversation and they were so nice. It was a lot of fun. Sometimes those diabetes spottings in the wild, really give you more than you'd expect. There. Just something so rewarding and so affirming about knowing you're not the only one, I think as much for parents as for the kids, and someday I'll tell you more about our crazy road trips, we're on a quest as a family to try to hit all 50 states and the kids were so excited about this when they were younger, I think we're on 27 or 28, I'd have to check. And I think I'm the only one who's still excited about trying to do it has to be all four of us together, you have to have feet on the ground, airports do not count. And so feet on the ground, you can't drive through either you have to actually get out and stop and take a picture. You need picture evidence. You don't have to have all four faces in the photo because sometimes people are grumpy and don't want to take pictures. But we need all four of us. So we have one or two pictures where everybody's holding up a cup of coffee or hot chocolate. That one was like at 6am in Ohio on that road trip. I have another one in Las Vegas where we're all holding up gelato, and you can't see our faces. So I'm hoping this summer not to get completely off track to go to New England with the kids because we've got a lot estates a hit up there. Anyway, if you have a Tell me something good story can be a road trip or anything of the kind, whatever works for you. You can send it to me Stacy at Diabetes Connections. com or post it in the Facebook group Diabetes Connections to the group or send it to me on social media, it'll find its way to me, just tell me something good.
Keeping that busy schedule, which I'm actually having so much fun with. I'm going to Raleigh, North Carolina for the JDRF type one nation summit this weekend, doing not only the world's worst diabetes mom presentation, but also my favorite one about making connections in real life Diabetes Connections. I have been doing this talk since before the podcast came about. That's where the podcast got its name. And I'm also talking about social media. So I'm really excited to meet some new people right here in my state. And then in two weeks, I'll be in Maine, for an event in South Portland, Maine dizzy calendar as I head out on the world's worst diabetes. Mom book tour. And if you've got an event later in the year, things are still pretty busy. Definitely through April. But after that, it slows down to about one event a month right now. So if you've got a jdrf summit, if you've got another event, especially in the fall, please let me know. So we can plan for it. I would love to come and meet you. I can do those presentations. We can do a live podcast, we can just hang out and talk. It's always fun to meet new people. And I do love making those in real life connections. All right, coming up later this week, another mini episode, where I'm taking on what I think is a pretty controversial topic. In fact, when I posted about this on my personal page recently, I was shocked at the response I got. I'm going to be talking about why I think it really is a bad idea to post pictures of your child in the hospital. Yeah, I know a lot of people do this, but it's just not good. So I'll be talking about that coming up on Thursday. In the meantime, thank you as always to my editor john ducatis. audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday.
Unknown Speaker 43:12 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai | |||
| 11 Feb 2021 | Spare a Rose and a Game Show! (Classic Episode) | 00:35:35 | |
Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month. This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show. Find out more and donate to Spare a Rose via Life for a Child Your Diabetes May Vary - Bennet's blog Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (untouched by human hands - our computer doesn't speak diabetes very well - check back for the edited/cleaned up transcript!) Stacey Simms 0:00 Announcer 0:18 Stacey Simms 0:23 Unknown Speaker 4:09 Unknown Speaker 4:10 Unknown Speaker 4:12 Unknown Speaker 4:13 Stacey Simms 4:14 Kerri Sparling 4:19 Stacey Simms 5:45 Scott Johnson 5:55 Stacey Simms 6:46 Bennet Dunlap 6:58 Stacey Simms 8:35 Kerri Sparling 8:55 Stacey Simms 10:10 Scott Johnson 10:34 Stacey Simms 11:12 Kerri Sparling 11:43 Unknown Speaker 11:45 Kerri Sparling 11:46 Stacey Simms 12:51 Bennet Dunlap 13:12 Scott Johnson 14:30 Bennet Dunlap 15:05 Stacey Simms 16:12 Unknown Speaker 17:01 Stacey Simms 17:04 Unknown Speaker 17:10 Stacey Simms 18:27 Unknown Speaker 19:18 Stacey Simms 19:19 Unknown Speaker 19:22 Benny 19:23 Kerri Sparling 19:24 Unknown Speaker 20:14 Kerri Sparling 20:15 Stacey Simms 20:21 Kerri Sparling 20:25 Stacey Simms 20:29 Bennet Dunlap 20:39 Stacey Simms 21:50 Scott Johnson 22:00 Stacey Simms 23:08 Unknown Speaker 23:36 Stacey Simms 23:46 Bennet Dunlap 23:49 Unknown Speaker 23:53 Bennet Dunlap 23:54 Stacey Simms 24:02 Scott Johnson 24:16 Stacey Simms 24:34 Unknown Speaker 24:45 Unknown Speaker 25:00 Stacey Simms 25:01 Bennet Dunlap 25:35 Unknown Speaker 25:41 Kerri Sparling 25:43 Unknown Speaker 25:52 Unknown Speaker 25:54 Scott Johnson 25:56 Unknown Speaker 26:07 Stacey Simms 26:13 Kerri Sparling 26:56 Unknown Speaker 27:13 Stacey Simms 27:25 Unknown Speaker 28:20 Unknown Speaker 28:22 Kerri Sparling 28:22 Unknown Speaker 28:24 Unknown Speaker 28:26 Unknown Speaker 28:28 Unknown Speaker 28:30 Stacey Simms 28:33 Unknown Speaker 28:49 Scott Johnson 28:51 Unknown Speaker 28:54 Stacey Simms 28:55 Bennet Dunlap 29:21 Stacey Simms 29:24 Unknown Speaker 29:33 Stacey Simms 29:38 Unknown Speaker 29:51 Stacey Simms 29:53 Scott Johnson 30:08 Stacey Simms 30:22 Scott Johnson 30:32 Stacey Simms 30:37 Unknown Speaker 31:05 Stacey Simms 31:10 Unknown Speaker 31:20 Bennet Dunlap 31:22 Unknown Speaker 31:28 Stacey Simms 31:37 Bennet Dunlap 31:45 Stacey Simms 31:53 Bennet Dunlap 31:55 Stacey Simms 31:58 Unknown Speaker 32:08 Stacey Simms 32:14 Bennet Dunlap 32:20 Stacey Simms 32:21 Scott Johnson 32:36 Unknown Speaker 32:50 Kerri Sparling 32:51 Stacey Simms 33:12 Bennet Dunlap 33:13 Stacey Simms 33:15 Unknown Speaker 33:34 Unknown Speaker 33:41 Stacey Simms 33:46 Benny 35:29 Transcribed by https://otter.ai | |||
| 08 Feb 2022 | "It was incredibly frustrating" When Another Autoimmune Condition Complicates Life with T1D | 00:43:48 | |
People with diabetes were encouraged to get a COVID vaccine early on when the shots were released. But what happens when you live with type 1 and another condition where the vaccine recommendation is more complicated? Molly Schreiber lives with T1D and rheumatoid arthritis. Her doctors told her to absolutely NOT get a COVID vaccine due to treatment she was taking for the second condition. She was able to eventually get vaccinated then, despite taking precautions, she and her entire family got the Omicron variant. They’re fine now and Molly has a lot of good info to share. She also has several family members with type 1 and has a lot to say about how we care for older people with T1D. Molly works at the Community Manager for Savvy Coop. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Type 1 Diabetes with Other Autoimmune Diseases Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! DEXCOMStacey Simms 0:00 Stacey Simms 0:52 Molly Schreiber 6:08 Molly Schreiber 6:14 Stacey Simms 6:31 Molly Schreiber 6:50 Stacey Simms 7:51 Molly Schreiber 7:56 Stacey Simms 11:11 Molly Schreiber 11:24 Stacey Simms 13:17 Molly Schreiber 13:48 Stacey Simms 16:40 Molly Schreiber 16:47 Stacey Simms 18:10 Right back to Molly in a moment, but first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not, it's not just that you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com/g six dash Medicare and I will link that up for this episode. You don't need to write it down. It will be in the show notes at the homepage at diabetes connections.com You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com/g six dash Medicare. Now back to Molly talking about her family's experience with COVID. Molly Schreiber 19:37 Stacey Simms 20:02 Molly Schreiber 20:04 Stacey Simms 22:43 Molly Schreiber 22:57 Stacey Simms 24:34 Molly Schreiber 24:41 Stacey Simms 26:13 Molly Schreiber 26:26 Stacey Simms 26:42 Molly Schreiber 27:01 Stacey Simms 29:34 Molly Schreiber 29:37 Stacey Simms 29:56 Molly Schreiber 29:59 Stacey Simms 31:14 Molly Schreiber 31:22 Stacey Simms 34:36 Molly Schreiber 34:54 Stacey Simms 35:00 Molly Schreiber 35:15 Stacey Simms 38:57 Molly Schreiber 39:14 Stacey Simms 39:25 Molly Schreiber 39:37 Stacey Simms 39:41 Molly Schreiber 39:50 Stacey Simms 40:04 Molly Schreiber 40:20 Stacey Simms 40:34 Molly Schreiber 40:45 Stacey Simms 40:51 Benny 43:44 | |||
| 30 Jun 2023 | In the News.. FDA approves new T1D islet cell therapy, what's next for weight loss and T2D drugs, Dexcom and Libre updates and more! | 00:08:24 | |
It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: FDA approval for a pancreatic islet cell therapy to treat type 1, stem cell research moves ahead, big news from the ADA Scientific Sessions about what's next for medications like Mounjaro and a pill form of semaglutide. Dexcom announces a sensor for people with type 2 who don't use insulin, Libre moves ahead with Ketone monitoring and more.
Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines happening now https://www.businesswire.com/news/home/20230623446641/en/Vertex-Presents-Positive-VX-880-Results-From-Ongoing-Phase-12-Study-in-Type-1-Diabetes-at-the-American-Diabetes-Association-83rd-Scientific-Sessions Orforglipron and retatrutide both mimic hormones produced by the lining of the gut in response to certain nutrients. These hormones help to slow the passage of food through the digestive tract and lower appetite by acting on receptors in the brain — both effects that reduce people’s desire to eat and help them to lose weight. Orfoglipron is a non-peptide molecule that researchers say is easy to produce and is a pill.. a lower price is anticipated for this one. Retratritude looks like it could help people lose even more weight than Mounjaro. XX XX The iLet is a bionic pancreas that fully automates 100% of all user insulin doses, providing users with the choice of three insulins, Novolog; Humalog; and Fiasp Pumpcart. The device eases diabetes management in everyday life and almost eliminates the expertise that has been required in the past to set up and manage a traditional insulin pump. In May 2023, Beta Bionics was awarded FDA approval for the iLet device. The iLet manages glucose levels with just a meal announcement and is paired with a Dexcom G6 Continuous Glucose Monitoring System for glucose readings. All that is required for set-up is the user’s weight. While there is a need for carbohydrate awareness, no carb counting is necessary. Bolusing, correction factors, insulin-to-carb ratios, and pre-set basal rates are also unnecessary. Beta Bionics president and CEO Sean Saint said: “Beta Bionics has been working tirelessly to create an insulin delivery system that offers less burden and more convenience for the type 1 community. Since launching last month, the iLet bionic pancreas is now available and clinics and users are being trained on its simple design and easy management features. “When Fiasp Pumpcart prefilled cartridges are available, users will save time not having to manually fill cartridges and will have more choice for their diabetes management.” https://www.forbes.com/sites/andrewwilliams/2023/06/27/oura-smart-ring-can-be-used-to-help-monitor-blood-sugar/?sh=2520116c2b10 That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon. | |||
| 03 Nov 2020 | "It's Not Going To Go Away" - The Future of Telemedicine & Diabetes | 00:23:08 | |
Have you seen your doctor remotely this year? Turns out that endocrinology is the number one specialty using telemedicine in 2020. We talk to Dr. Peter Alperin from Doximity about their recent study that says about 20% of all medical visits will be conducted via telemedicine this year. We also talk about what this means going forward, how to get the most of a visit when you can't be in person and why the heck doctors' offices still use fax machines! Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo-pen, the first pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28 Hi, and welcome to another episode of our show. As this episode goes live, it is Election Day in the United States and we are not going to focus on that here. I am guessing many of you have actually found this episode in the days following its initial release. But whenever you are joining us I think this is a really interesting topic that you know many of us experienced for the first time this year. And that's telehealth.
If you are new to the show. I'm really glad you found us. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes. My son Benny was diagnosed when he was a toddler way back in 2006. He is now a sophomore in high school and we had one telehealth visit earlier this year. That was back in March, when everything started, we were able to go into the doctor's office for his summer and fall endocrinology appointments. I talked more about the experience, you know how it went some of the pitfalls that we ran into for that first telehealth appointment. And I do that in the interview. Just a heads up this will be a shorter than usual episode is just the interview, we will have a regular episode with our segments with Tell me something good and all of that later this week. For this episode, I am talking to the folks from Doximity. This is a professional medical network, sort of like LinkedIn for doctors. They had a study recently that said endocrinology is the specialty that uses telemedicine the most number one at everybody. And there are some interesting reasons why, of course remote or telehealth or whatever want to call it was huge earlier this year, it did peak around April or May. But there are some predictions that about 20% of all medical visits will still be conducted via telemedicine by the close of this year by the end of 2020. And that would represent about $29 billion worth of medical services. It is certainly worth watching. So why endocrinology? What does this mean going forward? And why do doctors offices still use fax machines? Those are some of the questions I asked Dr. Pete Alperin, who joined us from Doximity. Dr. Alperin, thank you so much for joining me. I appreciate you spending some time with us today. Dr. Peter Alperin Thanks. Thank you so much for having me looking forward to it. Stacey Simms So a lot to unpack here with this study and why endocrinology but let me just back up first and ask you what is Doximity? What do you all do?
Dr. Peter Alperin 2:51 So Doximity is the largest online network of health professionals in the United States. And I think a great way to think about us is we're like a LinkedIn for healthcare professionals. We started off primarily with physicians, but we've expanded to include nurse practitioners, PhDs and a variety of other you know, healthcare professionals that range the gamut from, you know, optometrists, etc, to physical therapists and pharmacists and the like. We have over 70% of United States physicians have joined our network, and we have over, you know, 1.2 million members overall. And when I say it's like LinkedIn, you can think of it as LinkedIn, but tailored towards the healthcare professional. So we have a lot of features that are very specific to the needs of the people who work in the medical field. So we have HIPAA compliant communication, including faxing, we have our Doximity, dialer, video and audio products, which allow physicians to communicate easily securely and reliably with their patients. And then doctors can connect with each other much like you would on other social sites, and earn free continuing medical education. And they keep up on the latest Medical News. And we have a news feed, which is one of the biggest features on our site that allows the health care professionals to keep up on the latest and greatest in their particular fields, as well as just general information about the health care profession.
Stacey Simms 4:09 So one of the things that you've done with Doximity this year is well, I assume you do this every year is a state report, right? The 2020 state report and this is the state of telemedicine. I'm just curious, do you do that every year,
Dr. Peter Alperin 4:22 which is the second year that we've done this, and we've done studies in a variety of other areas. So we've done workforce studies, but we have a unique position in the market, being able to you know, call on the information and the opinions of like I mentioned over 70% of the US physician base and as a result, it gives us a really nice vantage point so that we can understand and really learn about these issues, particularly workforce issues.
Stacey Simms 4:48 So let's talk about the 2020 state of telemedicine report. And it's interesting because I have a great audience. I have a very smart audience but I also have an audience that is uniquely positioned to experience probably just as much if not more telehealth than anybody else in the country this year, so I'm really curious to hear these results because endocrinology was the number one specialty that utilizes telemedicine the most in that study, tell me a little bit more about that by number by percentage.
Dr. Peter Alperin 5:16 So it's by percentage, it probably isn't, it wouldn't be by numbers, mainly because there just aren't enough endocrinologist to make that a possibility. But the situation is that we surveyed, you know, 2000 of our physicians on our user base, and ask them a variety of different questions. And one of the things as you noted that that became clear was that endocrinology was one of the top professions it was the top profession, in terms of utilizing telehealth and it's that isn't surprising, mainly because endocrinologist take care of patients with diabetes, as well as other obviously, endocrine disorders, but it's a very chronic disease, heavy specialty and chronic disease is uniquely amenable to the telehealth platform, because patients with chronic disease need to be seen by their health care professionals on a longitudinal basis of you know, for many years forever. And it is something where you can have many light touches, so that you can have a dietitian who might touch the patient, the physician, you know, diabetes, education, and, you know, runs the gamut. And as a result, because endocrinologist obviously specialize and have more diabetes patients than the average doctor, it stands to reason that they would be the specialty that has been utilizing this the most. We've also noticed in our study, and you may have noticed this that chronic care visits were completed at a higher percentage on telehealth and other regular type visits, more acute care.
Stacey Simms 6:38 I'm curious, in the study, do you talk about the quality of these meetings because we've had telehealth this year, my son sees an endocrinologist, every quarter, we sometimes stretch it out, but we see every quarter. And we did one visit during this time that was remote, and it went fine. I had a little bit of you know, I have a we had a few issues, just getting some reports, it was fine. Did you talk about quality at all.
Dr. Peter Alperin 7:02 So the study didn't really dive into that I can tell you from personal experience, that you do need to learn how to do a telehealth visit, you need to prep your patients properly. And so it is very, very beneficial if you send patients at least the ones who have not had a visit before on using a telehealth platform to you know the different tips and tricks to be able to make that visit as ideal as possible. And then the physician themselves needs training to make sure that they understand how to interact, look at the camera, the variety of different things. So we didn't go into that in this study. But it is something that I know is important for all physicians and frankly, patients to have to kind of acclimate themselves to that communication platform.
Stacey Simms 7:46 Yeah, our biggest problem was the actual reports. My son uses an insulin pump, he uses a continuous glucose monitor, and they have separate reports that are you're able to get online. But you know, we had sent it or the office had called us. And here's the clarity report, login. Here's the T slim report, login. And then the doctor was online. He's like, nobody gave me anything. So I had to give him like my login while we were talking. It was really fun. We've known him for 14 years. So it was no big deal. But it was funny to have to. I think we were also his first visit that way. I'm sure it got better. But it was funny. You know, especially with diabetes, especially with type one, there can be so many technical things, if you're lucky enough to have access to the technology. Okay. Anyway, let's get back to the report. I know it's a little early to extrapolate, you know, from a report like this, but what do you think I mean, in on your network? Are physicians excited about telemedicine? Do they like it? Do they think it's going to continue?
Dr. Peter Alperin 8:38 So they do think it's going to continue? And I think they're excited as well. I think there was a little bit of trepidation in the beginning, because it was really thrust upon people. And I think there remains some unanswered questions. So let us sort of let me go into each of those. There's no question that telehealth is going to stay. I mean, we're the expectation is that there'll be $29 billion worth of telemedicine telemedicine visits by the end of 2020, and over 100 billion by the end of 2023. So this is something that is very, is absolutely not going to go away. And it's not going to go away because patients like it. And frankly, physicians are going to like it as well. The reasons that patients like it are is that it's it's quite convenient. And particularly for patients with chronic illness, or patients who have difficulty getting to the doctor's office, it can really be a lifeline. It's much easier to have additional visits over a telehealth platform and then have maybe a quarterly visit where the patient actually comes in to see you than it is to have that patient come to your office, you know, every few weeks, if I'm talking about patients who have you know, particularly brittle diabetes or you know, need to be seen on a more frequent basis for whatever particular reason. I think that if you look at the study, you know that it bears that out with the increase in the in the chronic care visits that you saw, and also just the satisfaction in general. Now, like I mentioned, there are a few kinks that need to continue to be worked out right now. As we noted in the study, the payments for these visits is not 100% certain going forward, although all indicators are that this is going to be made permanent. But you know, if I'm being accurate right now, CMS, for instance, is operating on waivers that allow you to build for the visit in the way that you would want to be able to all as I mentioned, all indicators are that's going to be made permanent. That's probably the biggest sort of thing that remains to be worked out. But private payers seem to be following suit as well.
Stacey Simms 10:27 Now, you're an internist. You're not an endocrinologist, but I know you've seen patients, people with diabetes. I'm curious what you think about the missing element of telehealth, especially as it pertains to chronic condition like this. And that's the person that's the in person relationship. And as a parent of a child with type one, as a wife of a husband with type two, the personal relationship that they have with their separate physicians is so important to their care. And well, I think telehealth is great, I would hate to see it take over. Right I really my my son, I were talking about this, and he felt the visit was worthless. It was not we actually made it he's 15. He thinks a lot of things are worthless. But we made basal rate changes, we checked in on certain things. But then when we were able to go back to the office over the summer, he thought it was a much better visit. I don't know from where I stood there was wasn't as dramatic a difference as he indicated. But I think he had a lot to say about it. I'm curious, from your perspective, as the physician, what you think about that,
Dr. Peter Alperin 11:27 you know, I think that there's never going to be a substitute for an in person visit full stop. But that said, I think it's like all pieces of technology, the key is finding the right place to use it. Because it's not about the technology. It's about the physician patient conversation and the care that you're delivering. And so the best technology is invisible, right, it disappears. And so that you really it's about that connection that you have. I think that like we talked about in your previous question, there does need to be some acclamation on the part of the patient and the physician in terms of getting used to this. But I still strongly believe that the overwhelming I guess you would call it, the fundamentals of it are really just on the side of telemedicine, it's efficient, you have the ability to touch more patients. Now, one thing that I've thought about is that a telemedicine visit is always easier with a patient that you already know. Yeah. So that's also another reason why I think that in the realm of chronic care which diabetes is squarely in the middle of, you're going to need to have that initial visit with the patient in person. But over time, having a phone call or a video visit is actually fine. Because you know, the patient and the patient knows you, it is a little trickier for an acute care visit, it's just a little bit the physical exam is a little bit more difficult. Obviously, in patients with chronic disease, you don't need to do a full physical exam with every single visit it really, you know, it obviously depends on why they're there and what their particular symptoms are. So I do agree that the inpatient visit will never go away, and, frankly, is probably a more satisfying visit, because I think humans are social creatures, and they really like that connection. But that doesn't mean that the telemedicine is somehow you know, inferior, or it doesn't mean that at all. And it also doesn't mean that that it's not going to stay, it's just going to have to be used in the right circumstance.
Stacey Simms 13:11 I hope they keep it in our local office, I think we could see switching our for yearly visits to to in person and to via computer, it was just you know, it's also a 45 minute drive. Yeah, it's a nice step to heart and you have,
Dr. Peter Alperin 13:25 obviously in a time of a pandemic, you are running the risk of infection of other people. And obviously patients with diabetes, many of whom are older, the run the risk of getting that infection are at higher risk of covid. And the whole nine yards. And the other thing is, is that you know, even when the pandemic is ending, let's fast forward, you know, a couple years, I still think it's going to be very beneficial for patients, particularly patients who don't have, you know, the means to come to the office that easily. So it's important to consider that as well.
Stacey Simms 13:54 I'm curious to one of the things that our doctor talked about was trying and this was way at the beginning, he was trying to figure out how to help patients do the kind of physical exam that he does in the office. In other words, looking at fingertips to make sure that you know, they're not poking the same finger or they're, you know, the fingers are doing okay for blood sugar checks, checking the sites, where a pump inset would go and teaching patients how to kind of do a self check, which a lot of people have never thought to do with diabetes. I haven't checked in with him because as I said, we went back in person and I know they're doing in person visits now. But I'm curious if things like that have come up maybe even in other practices in some of the chats and conversations that you've seen.
Dr. Peter Alperin 14:36 Yeah, I mean, both personal experience and then, you know, being at duck somebody I have a unique vantage point on the conversations that occur on our newsfeed where you'll see the you know, the the chatter back and forth about a particular article. The answer is there are great many things that you can do to help with the physical exam and this gets back to again, you know, having the patient be properly prepped, if you will, for that visit. So that they're in a comfortable seat so that there's good lighting, that they have loose fitting clothing, that they're aware of the things that you might do so that they have also, you know, the proper undergarments. So depending upon what the physical exam might be, but there are certain things you can't do like it's very difficult to palpate and do an abdominal exam right over the phone. And it's just it's a tricky part of the any, any physician will tell you, the abdominal exam has always been one of the trickier parts of any exam. It's also hard to listen to lungs, if you will, over the phone. But there are some things you can do. For instance, if a patient's complaining of abdominal pain you and they and their mobile, you can ask them to sort of maybe jump up and down and see whether or not that hurts, because really what you're looking for is a sudden jar, far from the exam that all of us learned in medical school, and probably far from the same level of sensitivity and the ability to diagnose things, but it certainly can help. But that's where the importance of triage comes in. And that's why having a front office that can understand when a patient needs to come into the office versus not come into the office is important. And look, I've converted telehealth exams to in person ones where I've said at the end of the conversation, you know, this was great, but I think I still need to learn more, why don't you call the office and find out if there's a time you can come in in the next week, then that kind of thing. You know, it is being taken up by physicians of all ages. And I think that was a really interesting finding that, you know, typically technology is always adopted more more quickly, among younger people just across the board. Here's a case where that's not true, where it's physicians in their 40s and 50s, who are actually taking to telemedicine more quickly than physicians in their 30s, then one of the reasons that we think that that's true, is that physicians in the 40s and 50s are the busy physicians are the ones who see the, I hesitate to say in this in the those salad years of their life where they're raising families, and they have, you know, mortgage payments and life. And so they're working more, I also perhaps think that their practices are bigger, they're more comfortable with their patient base. And it takes a certain level of comfort, like we talked about with your patient panel, and the folks that you're caring for to have a telemedicine visit be just the most optimal thing that can be again, not that you can't do it when you're a younger physician. But when you're just starting out, you don't know quite as much. If you ask any physician, they'll tell you that the amount of learning that they did in their first three years after their residency training is just absolutely the most because that's when you can't turn to anybody else and say, hey, what should what would you do about this? It's your The buck stops with you. So you learn a tremendous amount when that happens.
Stacey Simms 17:29 You heard me laugh a little bit, because when you said older physicians, I was expecting you to say physicians in their 60s, perhaps even into their 70s I did not expect you to say physician 40s and 50s. I know, we're all well, you know,
Dr. Peter Alperin 17:44 it's a good point, you know, half of all US physicians are you know, over 50. And, you know, there's a probably a big wave coming of physicians or, you know, start to cut back.
Stacey Simms 17:56 Well, someone as someone who is pushing toward 50 very rapidly. I'm not happy to hear the older term being used.
Dr. Peter Alperin 18:02 I'm over 50. So it
Stacey Simms 18:05 is what it is. Hey, before I let you go, one of the very first things you said I made a note to come back to you were talking about Doximity and your type of the things that everybody can do. And then and you mentioned fax machines.
Unknown Speaker 18:18 Uh huh.
Stacey Simms 18:19 It says nothing to do with anything we've talked about. But I have to ask you, why are American doctors in our health care system still using fax machines? When nobody has been at home? nobody uses the technology anymore.
Dr. Peter Alperin 18:32 I mean, why? It's a fantastic question. And it has its roots. It's really it comes down to two things, but it has its roots in the HIPAA law. So most people on I imagine in your audience are familiar with HIPAA. A lot. Most people are familiar with it. But so that's the primary piece of federal legislation that governs patient privacy, it also governs communication. And when HIPAA was written in the late 90s, or mid to late 90s, the fax machine was ubiquitous. I mean, that was 25 years ago, but the fax machine was grandfathered. And therefore if I send a fax to another physician, or anybody that the communications and the security around that is just handled differently, legally, and there's more protections for it. So that's the first thing. So that's why faxes never went away. And then at the same time as electronic health records came about, and, you know, email became the primary sort of medium of communication that was not covered. And therefore there's all sorts of security protocols that need to happen. You need to use secure email and there's patient information. And because of those security issues, it's an a patchwork just to quilt of rules and regulations. physicians have just stuck with the fax machine because it's in every physician's office, and now it's on every physician's phone. It was the very first feature we created because it's the thing that positions us. I mean, I fax something this weekend, the sending orders to a nursing home for a patient who needed some medication changes and so from your phone from my phone And so that's what we offer on doximity is that ability to fax, receive, send sign and send it. So I never touch a piece of paper per se. But it all happens over a fax protocol. And that's actually what a lot of physicians do. So it's not always when you hear fax machine, it's still a ton of paper. But a lot of physicians have moved to E fax. So you see that as well. And I
Stacey Simms 20:19 guess as patients, we can do that, too. I had an effects account for a while, but I only used it for doctors. Exactly. I
Dr. Peter Alperin 20:25 know. It's a very interesting thing. And there you go.
Stacey Simms 20:30 I know you weren't expecting to talk about that. But it is
Dr. Peter Alperin 20:33 a great question. You know, we still have a huge number of our users who who use our fax machine. And it's the kind of thing that even if you're not a heavy fax user, you still need to have one because you need to be able to receive information from other physicians.
Stacey Simms 20:44 Well, Dr. Alperin, thank you so much for joining me, this was really interesting. And I hope you can come back maybe and let us know other things that you find in Doximity that are of interest to people with diabetes. Thank you so much.
Dr. Peter Alperin 20:54 Thank you so much for having us. It's an important study. It's an important time in medicine, and we appreciate you helping us get the message out.
Announcer 21:06 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 21:12 You can read that study from Doximity and some other information. I will link it all up on the episode homepage as usual at Diabetes connections.com. There's always a transcript for every episode in 2020. And we're starting to go back and fill those in for previous years as well. I'm asking in the Facebook group if you went to a telehealth or remote visit this year, and if so, would you do it again? I definitely would as you heard me say, you know Benny wasn't crazy about it. That's because he likes he's driving now he likes to drive down to the office he likes to see and be seen and he has a great relationship with our endo but I really think if we can get away with it we have to see the four times a year although I stretch it out probably like most of you so it's really three times a year just you know, you know you can work that calendar, but I think we could probably get away with one or two remotely and with Dexcom I don't need an A1C from him all the time. You can see the estimate, but we'll see how it goes. love to know what you think. Thank you to my editor John Bukenas from audio editing solutions. Thank you for listening. We will be back in just a couple of days with a regular length episode with all the segments. I am doing a bit of a state of state with JDRF with Aaron Kowalski, who is the CEO of JDRF wanted to get his take on this really unusual year, what research is going to be stopped or or held up or even everything's going to progress but nothing is as normal with JDRF or anything else. And it was really interesting to talk to him and also let him respond to some of the criticism from the community that JDRF has been hearing recently. That will follow in just a couple of days, likely Thursday of this week. Until then, I'm Stacey Simms. Be kind to yourself.
Benny 22:58 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 25 Feb 2022 | In the News... Vitamin D, Endos and Telehealth, Type 1: The Movie and more! | 00:06:12 | |
It’s “In the News…” Got a few minutes? Get caught up! Top stories this week include: a look at Vitamin D in newly diagnosed kids with type 1, new study about bariatric surgery, type 2 and COVID, endos are the top specialty adopting telehealth and a look at a new movie about type 1 - find out why it also has backing from the Star Trek community! -- Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! OMNIPODDEXCOMHello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. If you’re new we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast. | |||
| 10 Oct 2017 | Weston Nordgren on Nightscout, Facebook & #WeAreNotWaiting | 01:09:04 | |
Weston Nordgren is the Vice President of the Nightscout Foundation, and Community Liaison for CGM in the Cloud worldwide. Behind those titles is quite a story. We talk to Wes about his son’s diagnosis as an infant, their family's journey to find solutions and the power of the #WeAreNotWaiting community. Wes recently represented the CGM in the Cloud Facebook group at an exclusive international Facebook conference. He shares what he learned there and talks about his son's experience with Looping and on the new Medtronic hybrid closed loop pump. We also mention OpenAPS. In our shoptalk segment, no more chalky glucose tabs? Chris Angell says he needed something better to treat his lows, so he created GlucoLift. You'll also hear a clip of Polaroid from Truck Stop Honey's debut album. It's a very personal story and song from previous guest Amanda Jo. Ross Baker is another previous guest, Stacey calls him T1D's Marathon Man. He is set to run in the Maui Marathon on October 15th, completing an incredible mission of running a marathon in every US state and Washington DC. Find out more about Animas and their message to customers as they exit the insulin pump business. ----- 3:30 Stacey talks about Truck Stop Honey, clip of Polaroid 5:30 Animas/One Touch mention 7:00 Stacey talks about Ross Baker & the Maui Marathon 10:00 Interview with Weston Nordgren of Nightscout/CGM in the Cloud 1:01:30 Shoptalk with Chris Angell of GlucoLift ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Sign up for our newsletter here As always, thanks for listening!! | |||
| 07 Jan 2025 | T1D Tech Trends: VIVI Smart and what we’re watching at the Consumer Electronics Show | 00:26:45 | |
Every January the Consumer Electronics Show gives us a glimpse at what technology might be coming. This show used to be full of phones and TV screens, but more and more CES is featuring health care. We’re taking a deep dive into one of the innovations on display - VIVI Smart - which aims to make multiple daily injections easier. Plus, other diabetes tech from the show that we think we’ll actually be using.. and some that may be more wishful thinking. My guest this week is Ron Nagar, the founder and CEO of TempraMed, the company that makes the VIVI Cap. I’ve talked about this product before, and we’ve used it with success.. Ron will talk about what’s new here. I think this is a great and really interesting trend to make MDI easier and more automated. Most people around the world do not use insulin pumps and while I’m grateful for the automation of the AID systems – it’s really important that companies continue to serve the entire diabetes population. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Disclosure: Tempramed has donated a VIVI Cap for our Moms' Night Out and is an affiliate sponsor of the podcast. Join us at an upcoming Moms' Night Out event! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections. | |||
| 16 Feb 2016 | Sam Fuld: Major League Baseball with T1D / Yoga for Diabetes | 00:58:50 | |
Sam Fuld returns for his tenth season of Major League Baseball this year, now with the Oakland A's. He was diagnosed at age 10 and found inspiration in established Major League players who had type 1. Now Fuld holds a yearly sports camp for kids with diabetes where all the coaches have T1D as well. Stacey also talks with Yoga instructor Rachel Zinman, who was misdiagnosed for six years! She says it was a relief to finally find out she had type 1 diabetes. | |||
| 30 Sep 2022 | In the News... Testing for T1D before symptoms, extended infusion sets, hysterectomy & T2D and more! | 00:08:03 | |
It's "In the News..." a look at the top diabetes stories and headlines of the past seven days. This week: new information about COVID and type 1 in kids, a new way to look for diabetes before symptoms appear, Medtronic may be ready to ship their 7-day infusion set, approved more than a year ago, and more. Thanks to our sponsor, T1D Exchange: www.t1dexchange.org/Stacey Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM*Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. https://www.endocrinologynetwork.com/view/studies-debate-link-between-covid-19-and-increased-type-1-diabetes-diagnoses With the Extended infusion set and reservoir, patients can keep the infusion sites they prefer working longer while also benefiting from the easy insertion process currently available with the MiniMedTM MioTM Advance infusion set (which also means training is a breeze). The Medtronic Extended Insuion set worn on the arm. What if a patient uses more than 300 units of U-100 insulin in a 7-day period? No problem. Patients with increased insulin needs will also be able to benefit from using the Extended infusion set by simply changing their reservoir mid-way through their use of the set. To support these patients, innovative and simple training resources will be made available. Stay tuned for more details regarding the Medtronic Extended infusion set and reservoir product launch later this year! In the meantime, if you have any questions, please contact your local Medtronic Diabetes representative. According to Corkey, her research led her to generate the testable hypothesis that the induction of autoimmunity is a consequence of one or more major inflammatory events in susceptible individuals. It’s al ot more complicated than that.. I’ll ink up the research published in the journal Diabetes. Previous research has linked hysterectomies to an increased risk of cardiovascular diseaseTrusted Source, incident hypertension, and thyroid cancer. Now, researchers from CHU de Rennes in Renne, France, have discovered a correlation between hysterectomy and increased risk for developing type 2 diabetes, especially among women under 45 years of age. The research, which has not yet been peer reviewed and published, was recently presented at the 2022 European Association for the Study of Diabetes (EASD) Annual Meeting in Stockholm, Sweden. This experiment helped the team narrow down the bears' secret to controlling their insulin: Eight key proteins that seem to have a unique role in bear biology, working either independently or together to regulate insulin during hibernation. Because humans share most of our genes with bears, understanding the role of these eight proteins could teach scientists more about human insulin resistance, Perry says. The diabetes community will have access to the event beginning at 8 a.m. BT / 3 a.m. ET / midnight PT on Oct. 4 at DexcomEvent.com. Click this link to register now! ==> www.reimaginet1d.com Join Dr. Mark Heyman for the 2nd Annual ReImagine T1D virtual workshop on October 6 from 7:30p - 9:30p Eastern! ReImagine T1D will challenge you to reimagine what is possible in your life with T1D and give you a roadmap to help them get there. After attending this ReImagine T1D, you'll have practical tools and actionable strategies that will empower you to live a full, flexible life without letting the emotional burden of T1D hold you back. If you cannot attend the event live a replay will be available, but you MUST register! Click this link to register now! ==> www.reimaginet1d.com XX | |||
| 02 Nov 2021 | From Angry T1D Teen to Diabetes Educator: Meet Kenny Rodenheiser | 00:44:41 | |
Kenny Rodenheiser is a diabetes educator, and a big part of the Children with Diabetes community. But when he was diagnosed as a young teenager, he felt angry and isolated and wanted nothing to do with anything like a diabetes conference. Kenny talks about what changed his mind, his road to becoming an educator and his current role at Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Episode transcription coming soon | |||
| 16 Jul 2021 | In the News... Smart Insulin, Pixar Features Diabetes, T1D up K2 and more! | 00:07:13 | |
It's In the News - the only weekly diabetes newscast! This week's headlines include: Lawsuit against insulin makers moves ahead Join Stacey live on Facebook to watch each Wednesday at 4:30pm EDT! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript Below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know… Stuff” XX The top story this week.. one step forward, one step back on a lawsuit involving all three insulin makers. A federal judge dropped anti-trust claims – but the case will move forward under federal racketeering laws. That means Eli Lilly, Novo Nordisk and Sanofi face organized crime charges. The Judge says the plaintiffs plausibly alleged schemes of unlawful bribery and mail and wire fraud. The other defendants in this case are pharmacy benefit managers Express Scripts, CVS Health, and UnitedHealth. Lilly, Novo Nordisk, and Sanofi are accused in the lawsuit of inflating the official list price of insulin while the actual prices negotiated by pharmacy benefit managers remained flat due to massive rebates from drug companies. XX In a separate development, Lilly announced they have spent one billion dollars on Protomer Technologies – a company who’s been working on what they call smart insulin. These proteins that can sense concentrations of specific molecules and adjust to create variable doses. This pipeline includes an insulin product that adjusts to different glucose levels in diabetic patients. In 2020 Lilly led an investment round that gave them 14% of the company. This deal gives them the rest. We’ve heard about glucose-responsive insulin for a while now, JDRF has funded a lot of the research. A spokesperson says this significant milestone brings the promise of the game changing technology one step closer to the clinic. XX Mixed news for Provention, the makers of teplizumab. The US FDA says no to the drug shown to delay type 1 diabetes in those most at risk. It made it through an FDA advisory panel earlier this year, but the full FDA issued what’s called a Complete Response Letter or CRL which means they’ve completed the review and won’t approve in its current form. However, earlier this week, the company got good news from the UK. Teplizumab was awarded an Innovation Passport – a new designation that is meant to fast track investigational medicines through the regulatory process there. https://finance.yahoo.com/news/teplizumab-awarded-innovation-passport-united-110000773.html XX An Australian study shows good outcomes with closed loop therapy for older adults with long time type 1. This study looked at 30 healthy adults aged 60 and older who’d previously used an insulin pump. They used the Medtronic 670G either in manual or auto mode for four months at a time then switched to the other mode for another 4 months. They all spent more time in range when in the closed loop stage.. and biggest benefit was seen overnight. Less hypoglycemia was a big benefit for this group. These researchers say they want people to know that older age is not a barrier to closed-loop therapy and closed-loop has important clinical benefits Bit of an editorial here: I would not call the 670G or really any current commercial pump offering a closed loop. To me, if you’re still bolusing for meals, that’s a hybrid closed loop or partial loop, but potato potahto perhaps. https://www.healio.com/news/endocrinology/20210706/closedloop-system-improves-cgm-metrics-for-older-adults-with-type-1-diabetes XX Pixar released the teaser for it’s next movie.. Turning Red and eagle eyed members of the DOC spotted what looks like a CGM and a purple insulin pump – maybe an older model Medtronic? I heard from a source at Pixar with type 1 who says this was absolutely on purpose It is definitely intentional to include better representation of the real world, whether it is wheelchair users, crutches, pumps/cgms, hearing aids, and more… This initiative is largely credited to our characters art and crowds departments. I’m working with the Pixar PR folks and hope to have more info and an interview as the movie is closer to release. XX A class of drugs widely used to treat heartburn and stomach ulcers, improve blood sugar in patients with diabetes when added to their usual treatment. These drugs are known as proton pump inhibitors – they include Prilosec and omeprazole. They suppress acid and affect certain hormones that are important in glucose regulation. They did not prevent diabetes.. but these researchers say if somebody is already on a PPI and they are doing well, it might also be helpful for their diabetes. Those with higher A1Cs benefited the most. https://www.webmd.com/diabetes/news/20210702/antacids-aid-blood-sugar-control-in-people-with-diabetes XX More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Back to the news… XX A new attempt to climb K2 – the second highest mountain on earth - something accomplished by only one person with type 1 diabetes before. Right now, Jerry Gore – diagnosed as an adult - is acclimating at base camp. Gore is 60 years old and has been climbing for 40 years. He hopes to raise money for his charity, Action4Diabetes, which provides healthcare and support to disadvantaged young people with Type 1 diabetes in South East Asia. https://www.justgiving.com/fundraising/jerry-gorek2?experiments=b2c_059_donate_to_yourself_v3&successType=StaticDonateButtonClick?utm_source=twitter&utm_medium=socpledgemobile&utm_content=jerry-gorek2?experiments=b2c_059_donate_to_yourself_v3&successType=StaticDonateButtonClick&utm_campaign=post-pledge-mobile&utm_term=MdnpGx3vR XX Congrats to Sebastien Sasseville who just biked across Canada in 15 days. We told you about this trip when he kicked off two weeks ago.. I don’t think anyone expected the weather to do what it did – Canada broke several heat records – and there were storms and wind. Sasseville lives with type 1, he did this to raise awareness for access to technology. He’s climbed Everest and has completed several grueling extreme races & posted on his Instagram: “This was the hardest thing I have ever done, and could not have done it without the crew. They kept me safe and alive, I will be forever grateful. We did it boys!!! Chase life experiences and create memories with people you love. That is my best advice for a fulfilled life.” Congratulations to Sebastien and crew! XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – a conversation with just a great guy.. he’s 81 and he’s lived with type 1 for more than 62 years. Thanks and I’ll see you soon | |||
| 25 Jul 2023 | "Diabetes perfection is impossible. And that's okay" - Actress Jennifer Stone | 00:34:05 | |
This week, actress Jennifer Stone lives with LADA.. she decided to become a nurse and started her first ER job in March of 2020. I asked her what it was like knowing she had to take care of her own diabetes while also taking care of patients during a pandemic: You might know Jennifer best from her days on Disney’s Wizards of Waverly Place… I caught up with her to talk about how she manages LADA, why she decided to become a nurse and still continue acting... and what’s next for her dual careers. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Medtronic's InPen system Our previous episode with Jennifer Stone Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 27 Feb 2018 | Should You Take Over-The-Counter Insulin? Rob's Story | 01:02:43 | |
Rob Howe spent 30 days using only over-the-counter, old school insulin from Walmart. Why? He has insurance, he can afford newer insulins and he normally wears the newest Medtronic hybrid-closed loop pump. But he says he had a scare when he thought he might not have the money to buy his regular insulin and he realized that he could educate others about how to do it. Join The Diabetes Connections Facebook Group Under the care of a CDE, Rob gave up his pump and switched to older NPH and Regular insulins. We talk about how it went, what he learned and why this is not the answer to rising insulin prices. Rob is the host of Diabetics Doing Things and is a former Washington Generals player! Stacey gets him to talk about playing against the World Famous Harlem Globetrotters. In our Know Better segment, a couple of follow ups as Tandem goes international to Canada and Scandinavia and a previous guest, Christel Oerum, is out with a new book. ----- 2:00 Stacey welcome, talks about over the counter insulin and mentions a few articles with more information. Consumer Reports: How to Get Insulin at a Cheaper Price NPR: "You Can Buy OTC Insulin, But Should You?" Diabetic Connect: Buying Insulin Without a Prescription: What to Know 5:00 Interview with Rob Howe 52:00 Know Better: Tandem goes international and Diabetes Strong is out with a new book 58:00 Stacey on the road: March 2 - JDRF Type One Nation Summit - Greater Chesapeake and Potomac ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
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| 10 Sep 2019 | Ask the D-Moms: Type 1 Diabetes at School | 00:49:44 | |
This week, it's our Ask the D-Moms back to school edition. We talk about tech in school, schedules, 504s and when your kid only has twenty minutes for lunch. Stacey & Moira McCarthy answer your questions. Join the Diabetes Connections Facebook Group! Plus.. Tell me Something Good with a big brother who steps up, and a pageant appearance that makes a difference Pre-order Stacey's Book: The World's Worst Diabetes Mom! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here
----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! | |||
| 23 Nov 2021 | "Wait Wait.. Don't Poke Me!" The Diabetes Game Show | 00:39:58 | |
It’s time for one of our favorite episodes of the year! Wait Wait! Don’t Poke Me, the diabetes game show! Taped this time around for the Children with Diabetes Friends for Life fall conference. If you’re familiar with NPR’s Wait Wait Don’t Tell Me, a lot of this will sound familiar, just with a diabetes twist! Our panelists tackle trivia, limericks and we try to "bluff the listener" with tales of diabetes in the wild. Can you guess which Olympian with T1D really had a wildlife encounter? Big thanks to our panelists: Nia Grant, Kyle Banks and Matt Point. They all have a connection for FFL and took time out of their busy schedules to goof off with me. There is a video version of this show over on our YouTube channel if you prefer to play along over there. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription coming soon | |||
| 21 Jan 2025 | Pregnancy, T1D, and Unexpected Challenges: Lauren Bongiorno shares her story | 00:46:37 | |
Lauren Bongiorno has spent years helping others thrive with diabetes through her company, Risely Health. Now, as she approaches motherhood, she’s sharing what it’s been like to navigate pregnancy with type 1 diabetes. From expectations vs. reality to a major stress event with her husband and even clashing with her doctors, Lauren opens up about this incredible and challenging chapter in her life. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join us at an upcoming Moms' Night Out event! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections. | |||
| 31 Dec 2024 | What’s next for type 1 diabetes? A look ahead to 2025 with Dr. David Ahn | 00:50:19 | |
This week, a look ahead to 2025! What will the new year bring for diabetes technology, research, and practical stuff that we’ll actually use? A fun conversation about the next twelve months with endocrinologist Dr. David Ahn. He's Chief of Diabetes at the Mary and Dick Allen Diabetes Center for Hoag Hospital and shares tech reviews and other options on social media here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join us at an upcoming Moms' Night Out event! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections. | |||
| 31 Aug 2021 | All About Afrezza Inhalable Insulin with CEO Mike Castagna | 00:38:33 | |
How much do you really know about the only inhalable insulin? This week, Stacey interviews the CEO of MannKind, makers of Afrezza. Mike Castagna talks about how Afrezza works, misconceptions about the product, the worldwide market, pediatric studies and lots more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom This is Diabetes Connections with Stacey Simms. This week all about Afrezza How much do you really know about the inhalable Insulet. I had a great conversation with the people who make it
Mike Castagna 0:34 For me, it's about using the right product to meet your needs to get you in control. And if you're doing well, great, we're going to avoid the long term complications. But if you're not doing your health, and you gotta really try to find the best set of tools, they're gonna make you successful and fit your lifestyle.
Stacey Simms 0:47 That's mankind CEO Mike Castagna. We talked about how Afrezza works misconceptions the worldwide market pediatric studies and lots more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. We so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. And this week, we're talking about the use of the only inhalable insulin, my son was diagnosed with type one right before he turned two, he is 16. My husband has type two diabetes, I don't have diabetes at all. But I have a background in broadcasting. And that is how you get the podcast, I have to say that personally, my family is very interested in Afrezza Benny really would like to try this seat. Of course, as I mentioned in that tease up there, they're looking at pediatrics, he is still under 18. So it's not proof for his age group. But we're watching it really closely. And I have a lot of friends. A lot of bloggers and people in the diabetes community have talked about this for years. And some things have changed. So I wanted to have them on the show and find out more. So a little bit of background for you. If you are brand new to all this, Afrezza was approved in the United States in 2014. And the company that makes it is mankind. For a while it was sold by Santa Fe, but then mankind took it back. It's one of those things where sometimes the business side seems to have gotten more attention than the product itself. So what is Afrezza it is a powder, it comes in cartridges, and you suck it in you inhale it with a special inhaler device. To me, it looks more like a whistle than a traditional inhaler like an asthma inhaler. It's not like a big tube. I'll link up some photos in the show notes. I'll also link up the Afrezza website so you can learn more and see their information. And my guest this week is Dr. Mike Castagna, the CEO of mankind now he has a Doctorate of pharmacy, he worked as a pharmacist behind the counter for CVS at the start of his career. But then he went back to school and he got an MBA from the Wharton School of Business. He's fun to talk to he doesn't mince words, and he truly believes in this product, I do have to tell you that Mike mentions monomeric insulin a couple of times, I'm going to come back after the interview and explain more about that give you a better definition. All you really need to know is that it's faster than how liquid insulin is made. And all of that in just a moment. But first Diabetes Connections is brought to you by Daario. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions on how to succeed, get the diabetes management plan that works with you and for you, Daria is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Mike, thanks for joining me, I'm really excited to catch up. And look, I'm stuttering because I can't believe this is the first time we're talking to you. But thanks for coming on. Oh, thank you, Rodney. I'm super excited before we jump in and start talking about Afrezza Can you give us some perspective kind of dial back because mankind is not. It's not a name that came out of nowhere? There's really important history. Can you kind of talk about that a little bit first?
Mike Castagna 4:14 Sure. Mankind comes from our founder named after Al Mann and Al Mann was a true innovator. He started I think 17 companies and everything from the cochlear implant to the pacemaker to insulin pumps that many of us know today as Medtronic used to be called mini med. And Al Mann built the insulin pumps over the 80s and 90s and was very successful and sold that company to Medtronic. And then he took literally $1 billion of his own money and invested in mankind. And he had put this company together through three companies he owned the technology to make Afrezza was really a combination of companies and the reason he was so dedicated as he saw in the pump market, which we now see today on CGM was that the variability in mealtime control was so high and the fluctuations you see that the influence takes about an hour and a half to kick in. And it's hard to get real time control if you can't get a faster acting insulin. And so he set out to make a real time acting insulin, so phrases and hailed as monomeric. And that was really what the magic was in our technology making a dry powder was was free dryness, if you heard of dippin dots ice cream, we have basically large dipping machines in our factory, but we free dry the particles to make a freezer and under stabilize the monomeric form. So when you're inhaling, you're inhaling influenza, as soon as it's in your blood is active, or when you inject it has to hold hexamer and has to break down there were about 45 minutes. And that's how you can make it stabilize an injectable form. But it has to break down and then it starts working. And that's why there's always this lag effect between we see injectable and foam in and help us is very different products were categorized with real time rapid acting, but the name mankind comes from elmen and the guy who probably 60% of people on pumps have their own pumps that he created. So amazing gentlemen, huge contributions to diabetes and millions of people were alive today because of his work and his generosity and roven to take that forward here and kids and frozen inhaled insulin.
Stacey Simms 6:06 I mean, never look at dippin dots the same again.
Mike Castagna 6:10 I see a large factory of they don't like it, you know, we can always make different types of things don't go well.
Stacey Simms 6:15 I love it. Let me ask you to go into a little bit more detail about how someone who uses Afrezza would actually use it. Can you talk a little bit about like a daily routine?
Mike Castagna 6:25 Yeah, I mean, I know, you know, well, you're in this disease. I mean, people sometimes graze all day, and they just kind of ride their sugars and take a little bit some along the way or many boluses. And some people you know, eat once or twice a day, or some people, you know, carb restricted and everyone has a different way. And I think that you know, the big thing difference was for the patients that I see is, it's in the moment, meaning you don't have to time your meal and your insulin, when you're going to take it and where you're going to be. As soon as your food arrives. You take your first dose.
Stacey Simms 6:50 Most people I know who use Afrezza take a long acting insulin with it. Is that pretty standard for people with type one?
Mike Castagna 6:57 Yeah, I'll take one year, right? Yeah, you need a basal insulin of some sort, you know, and, and a meal time was held, we do have some patients on pumps where they will use their punches for their basil, for example, and use a phrase for real time corrections. So you know, the average patient is very different. We have some patients that are type twos, you know not not on any basil, you'll need to be on basil for if you're type two. But if you're type one, you need to basil, long acting insulin, and you need your meal time. And we know the biggest problem in this country is still mealtime control is the number one thing people with diabetes struggle with. And it's a big reason why, you know, six, or seven or eight, you know, eight out of 10 people basically are not a goal on insulin because of the mealtime control. So it's a daily challenge for everybody.
Stacey Simms 7:39 Can you talk a little bit about how Afrezza is kind of measured out? Because when we think of mealtime, insulin, everything's a carb ratios. And especially as I mentioned, if you're on an insulin pump, you're you're putting in the carbs that you eat. So how does that work?
Mike Castagna 7:51 Yeah, it's funny, I get into many debates with people because, you know, I'm a pharmacist by training, but I'm not the smartest guy. But I couldn't do all the work people do every day to influence sensitivity ratios and carb counting and timing. And all I can tell you is everyone's masks off by 50%, one direction or another. And so we have this false pretense that we're that accurate. And dosing are influenced by down to the half a unit or one unit. And the reality is your angle of injection can decrease, you know, change your absorption by 25%, your site of injection can change absorption, your your stress level can change your impact with your insulin, there's so many things that go into your daily dosing of insulin, that, you know, being that precise, down to the unit is not as accurate as we all think. And I think that's that's one of the misnomers of, you know, the timing is what you really struggle with when you're using injectable insulin, and you just don't know what's going to happen. You know, when people I guess doctors often you know, you don't have to carb count with Afrezza . And they give me funny looks. And the reality is, you know, we've never done a study where you're carb counting to get your dose of insulin, that's, you know, so becomes a four 812 dose linear all the way up to 48 units, it's additive, and you just got to be close enough. And so it's about a two to one ratio, you know, there's no direct pulmonary equivalent to injectable insulin, unfortunately, but, you know, people are taking five units of injectable insulin per meal, they're gonna need about eight units of Afrezza and maybe even 12. And you're gonna figure that out, it's your first meal or two what what the right dose is for you. But you just got to be close enough. And that's a big misunderstanding for people of how accurate the dose has to be. This is the sixth dose cartridge is a big problem. I know plenty of type one patients who take for a 1224 meal, especially they haven't Chinese food or sushi, they just they dose a lot. So I think that's something people have been comfortable, so dramatically different than anything they've ever been trained or taught in their history of living with diabetes.
Stacey Simms 9:36 I would assume that a prescription for Afrezza comes with a doctor's visit where someone whether it's someone who works for Afrezza, or the endocrinologist talks to you about how to do this dosing. You said you figure it out, but I've got to assume that you're not just sending people home with this inhalable and say, just test it, I mean, right somebody, you're at a ratio
Mike Castagna 9:59 and I think That's the key thing is, you know, having patients understand because it's odorless and tasteless. So you inhale, and you're like, what did I get it? And I'm like, yeah, if you inhaled, and I have the second, it's in your blood, it's in your lungs, it's breath activated. So you can't really, of course, you can try to mess up something. But we have something called Blue Hill, where we can show proper inhalation technique in the office on an iPhone app or an Android. And so you know, we hope that patients are being trained either by our trainers or the doctors offices, and will propagation technique looks like that's number one. And then number two is the right dosing. And as you know, individualized dosing is important and fun. And, again, that's why I say we take a lot of the math out because it's either gonna be a four or an eight, and all of a sudden, you're like, Oh my god, I'm gonna take an eight units, it's a lot it's really not when you're taking inhalation units versus injectable units and that's what people got to get comfortable with if their first or second dose so they really do figure out this meal did this or pizza is going to take longer so pick another dose and now our people do figure it out pretty much within the first week. And then there's one thing actually I want to mention because I often forget this is because injectable insulin is such a long tail it's in your body for four to six hours before it's out and that feeds into your basal rate your long acting and so when people switch over presence pretty much out of your body in a net roughly an hour and a half. Sometimes people need to adjust their basil and that's something to watch out for if you do switch to Afrezza enter you're struggling with with some of the basil rates. Some patients you know I hear people anecdotally you know, we don't want to study their the bump up their basil 10 15% on Lantus. And I've heard patients on to see that because it does have that long tail of down there in front sometimes on the basil. So there are the other metrics patients have to watch out for when they are switching to the product. It's not just the uptime, it's also something that basil where you look at
Stacey Simms 11:38 I have a question and I i apologize because it's a it's a bit ridiculous. I'm gonna ask it anyway. Right back to the interview in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com slash risk. Now back to my interview with Mike, where I will ask that ridiculous question.
You had mentioned it's tasteless, odorless, I recall hearing and I'll have to fact check this. But I recall hearing that years ago dandruff shampoo, they had to add like that tingly feeling because people didn't think it was working like it's totally fake. But people just didn't believe it was a medicated shampoo because it didn't have an unpleasant sensation. Have you thought or talked at all about adding like a flavor or a feeling to so people really know that they got it? Or is that just really bananas?
Mike Castagna 13:12 If somebody might company come and talk to you ahead of time? There's somebody internally who wants us to look at like cherry flavor Afrezza especially as they go into pediatrics? And the answer is, look, there's blueberry Metformin because the metformin smells awful and tastes awful, probably. So you know, those things are possible. We've never done them. And to my knowledge in this industry with dry powders, it is a question that came up recently. Is that should we be thinking about the cherry flavor Afrezza or some other flavor? And I think the answer is TBD. We I don't know what the date is on inhaling the food coloring dye or whatever. Yeah. But that's some of the stuff we have to justify that it's safe and effective. And along with FDA would want us to test but they come up recently and another internal discussion. And since you're asking, I think we'll look at it, even if maybe there's a way to even show a placebo, that's a cherry flavor or something right a one time dose to see what it's like. So I don't know. But now, but people like I said, it's sometimes you get a call, like you know, when you take a phrase of one out of four people will get a cough initially. And generally there were the first four weeks that cough goes away 97% of the people. So I always tell people, you're having a cough, like as long as not interrupting your life, it should slowly get to your first refill. And it should be mostly resolved by that your body's getting used to putting a powder in your lungs. But that's uh, you know, when people ask, what's the difference between injectable and inhaled in terms of safety, you know, you're putting a drug powder in for the first time in your body and your body could choose that. And the number one thing that's different, were injectable insulin. You know, you have other other things. You're dealing with injection sites and pump sites and scar tissue and things like that.
Stacey Simms 14:48 Does the body actually acclimate to the powder or is it just a question of someone gets better and used to the inhalation sensation?
Mike Castagna 14:55 You know, it's it's a good question. I don't know if I have a black and white answer here. bodies give. Yeah, my guess is the body's getting used to putting a dry powder in and just exit and you get used to like weed. You can drink a glass of water before and after and help you minimize it. But it's generally like that's what it feels like it's not a productive call frightening, there's not a call to happens 10 minutes later, it usually happens. We have to inhale.
Stacey Simms 15:17 You mentioned BlueHale , can you tell us a little bit more about what that is?
Mike Castagna 15:21 Yeah, so BlueHale is to two different things. The first one that we're looking at is with the patient training device. So we can show you whether you had a good emulation or not a good emulation and show you that technique. The second version, actually, you can detect with those you put in the cartridge and hilar. So it has a proprietary software there that we can see what cartridge you put in for the adapter. And it'll tell you on your app, if you took a for a 12 or 16, how much you took in that session. And then we hooked integrate that with the CGM data. So now you can show those response curves on CGM one day and eventually I want to get into AI and predictive analytics. But we're not there yet. But we think that's the magic of what people really want, which is one that I use the thing when you live with diabetes, you just must remember and be that perfect to know exactly what those you did with them. You took it, what meal you were and then I simulated being a patient for a week. And I realized I could remember if I took a four and eight, I take a six or 620 is that 30 minutes or one hour like it was it was amazing. When you just think about life and people are human. They're there. They're human. So they're not keeping track. And they're not that accurate. They're just estimating. And that's when I talked about the dosing of insulin, like we're always estimating everything, we're estimating the time our food is going to come and how long it's going to work. You know, what the carbs are? How much am I gonna eat or drink? Like, it's all accurate? It's all off. None of it's that accurate. That to me is the thing I realized when I was thinking of doing one of those a disease, you don't you think they're perfect. They're not. They're human beings. And that's when I see one out of five doses of injectable insulin are intentionally missed. And the predominant one that's missed is actually lunchtime, which makes sense to wear out in a social environment. They don't want to inject. And by the time they get back, they forget it's probably too late. Or you're already high.
Stacey Simms 17:00 What do you mean by intentionally Miss? You mean? Like they people just forget?
Mike Castagna 17:03 No, no, they intentionally knew they should take a dose of insulin, but they're in a lunch conversation, or they forgot their insulin in the office. Or they'll have their CGM receiver on the bike, or they essentially don't they miss one of the five doses. So if you're missing 20% of your doses, it's really hard to get in control. And there's all kinds of reasons, but that's intentional omission versus unintentional. Which is I forgotten.
Stacey Simms 17:23 I'm curious what the sources on that that's, I mean, I don't doubt it. I'm just curious.
Mike Castagna 17:27 Yeah, I couldn't find it. follow up on that. I have your email, I'll look for it. Yeah, no, because I didn't believe it. And then there was a study done with one of the pens coming out that has digital connectivity. And I looked at it and I looked at the data and like, wait, if a person needs three times a day, seven days a week, that's at least 1721 doses, right? And I think the average person is taking like 1212 shots a week. And I'm like, Well, that doesn't make sense. But you realize, you know, again, we're human, people aren't always as compliant as we want, or they don't eat three times a day perfectly are the two big meals, you know, everyone does something different. So having insulin that meets your needs, and your lifestyle, I think is really important in the world. And you know, look, we like our products, obviously, we're here, we love the Afrezza. But But I also just for me, it's about using the right product that meets your needs to get you in control. And if you're doing well, great, you're gonna avoid the long term complications. But if you're not, you own your health, and you got to really try to find the best set of tools that are going to make you successful and fit your lifestyle. And, you know, obviously, we're not doing well when 80% of people on insulin on a boat. I mean, that's that, to me is the number one thing, I look at this country and say, well, despite all the adoption of pumps, and technology and CGM, we still have not made a meaningful difference in percent of people to go. And that's frustrating.
Stacey Simms 18:35 Way back in the beginning of this interview, we talked about Chinese food and pizza. And I'm just curious, you know, these are things that are hard to dos for, because they they kind of they come later, you know, what most people listening are very familiar with, and I think probably have their own system for dosing, whether it's an extended bolus or injecting more than once. How would you do something like that on a Friday? Is it a question of you would take what you think when you're eating, and then again, in a bit later, like, how do you account for those high fat foods?
Mike Castagna 19:02 Yeah, you know, I'm going to pick on Anthony Hightower, who I know you interviewed before. So I actually met Anthony on a bed over social media. And he had showed me your servers where he ate pizza. So I'll pick on him because I want the public discussion here, sir. He pizza and his sugars are basically flat over the two, three hours post meal. And I said, I'm like, shocked. He's like, this is something people cannot do naturally on the history of injectable insulin, they they always struggle. And when you eat pizza, you're going to struggle not just for hours, but potentially for the next day because just throws everything off. I think in his case, right? I've watched him he took a big dose up front, you know, let's say he's gonna take 12 units of injectable he took 24 units of Afrezza. And then he washed her wasn't an hour, and then an hour she was above where he started. He took another dose, maybe took a four and he has to tap it off. And then an hour later, just thought was too high or not right. But you can always keep your sugars in that kind of control. That's one of the studies we did back in 2018, called this test study was showing that you could do as soon as one hour with no more hyper risk. And that was a big concern of people, how can I do that one hour, well, pretty much hit its peak effect in one hour. So if your servers are still moving in the wrong direction, you can correct them at that point. And so that's where someone on pizza or Chinese food, like, yeah, it's a high dose up front and may manage it through the whole system. Or they may see an hour or two later, they're still high and to take another dose, that they can bring it down at some point.
Stacey Simms 20:20 Alright, let's talk about the big questions that people generally have. And that the one I hear the most is, Is it safe? Right? Is it? Is it okay to inhale this stuff into my lungs? Can you talk about the studies that you've done?
Mike Castagna 20:32 Yeah, I think if we were able to make inhaled insulin 100 years ago, we'd be scratching our heads those who would inject themselves three times a day. So I think it's just an unfortunate matter of 100 years of difference. But we studied a phrase that probably over 3000 patients 70, some trials $3 billion over 20 years, like, that's how much money time and energy is going into prove the safety and effectiveness of this product. And you know, and I tell people like you know, there is no data to say that it's not safe. We have all the rodent studies, all the CT scans that along looking for fibrosis looking for pulmonary issues, we found nothing. So it doesn't sit in the lung. There's an old product called exubera on the market years ago. And exubera was a sugar based manatal formulation which got absorbed over time into your lungs in a friend this case, the it's got water and human influence. So when we ask about what ingredients are you worried about the human influence, human influence, it's the whole AI base, but it's human influence characteristic, and water is purified. So we know that safe and the other only other carrier in our products SDK p which is a excluded product that is not metabolized in the body, it's just 100% extruded. So you know, there's three ingredients in our product. One is human insulin, one is water, and one is tkp. And SDK p comes out of the system. So I don't I don't think the body is afraid of human insulin. And what are so I think, you know, I always struggle with this topic. Because, you know, what happened is there was some lung cancer cases and Newser, were they there was a couple of our data. But you know, in the seven years since FDA approval, we've seen no safety signals come up in the postmarketing. We have almost 10,000 patients on the presidency. I know people in the drug for 1012 years. And so, you know, we don't see anything that gives us concern. And we're going into kids now, who would have to take the drug for 40 5060 years. So I think it's hard to prove something that you've never seen. But safety comes with time. And I think the good news is product has been approved by the FDA for seven years now. And we've not seeing any safety signals in our database, which we look every year, our rems program ended early by the FDA and and we've continued to show good data and all the studies we've done, we've not seen anything new come up in our anywhere safety issues. So if you're, you know, the populations, I would say if you have COPD, and asthma, this is not the right drug for you.
Stacey Simms 22:41 So a dumb question, though. If you have diabetes, and you smoke, can you get an Afrezza? prescription?
Mike Castagna 22:48 We would say you should not? Yes, we have a warning for that.
Stacey Simms 22:52 Well, I just wanted to be clear that there was an actual warning, it wasn't just a please don't because it's bad for
Mike Castagna 22:57 warning. Don't
Stacey Simms 23:00 tell me about the study with kids. Because I've got one, I've got a 16 year old who was quite interested in this product.
Mike Castagna 23:06 Yeah, no, I just found out Unfortunately, the dagga three year old cousin in the family have just come down with type one. And she will, she'll be four and our studies gonna go down to four years old to 17 years old, when we launch it. So I'm excited, we had to do a study to show that the pharmacokinetics and dynamics of inhaled insulin are similar in kids as it as adults. And so once that study was complete, we we wrote a protocol down to the FDA and said, We'd like to go into the next phase, and now run a larger study head to head against the standard of care. And the FDA has pretty much signed off on that protocol at this point. And we have contracted with a third party to now run that trial. And we'll be having our investigator meeting here in next month. And so hopefully, we'll see our first patient in the four to 17 year old range, probably here in September, October time frame. So super excited, long time to get here took too long from my perspective, but can't wait to help kids. But our founder Outman invested, he became very wealthy when he sold the insulin pump company. And he took $1 billion of his own money and made Afrezza inhaled insulin because he felt the problem with the injectable subcutaneous delivered insulin was it just took too long to work. And you know, somebody has an hour lag effects from food. That's real timing, it's always hard to catch those two even. And so he really wanted to make an inhaled insulin that really mimic a physiologic insulin that you see in the body. And he felt the only way you could get there was through a dry powder, lung delivered instantaneous insulin, you can also get there through an implantable pump. But that didn't work out when they tried that back in the 90s. I recall. So people got infections and things like that. So that would that didn't work. So they really were going to get a in my mind that physiologic inform that's gonna be monomeric stabilized is probably going to happen only through the inhaled route. So we have we have to get comfortable with this from overall efficacy and safety. Otherwise, you're not going to really ever get this control that people are looking for real time.
Stacey Simms 24:55 No man, he lived long enough to see Afrezza approved, didn't he?
Mike Castagna 24:59 He's All approved. And unfortunately, I'm here because he died on my daughter's birthday. So I was debating whether to come to mankind or not. And I'm very superstitious, the Al Mann pick the day he died. And he died February 25 2016. And then they made decision to join and help save the company and save a frozen kick on the market. Because I think, you know, I saw all these wonderful patients stories online. And I said, these patients like Anthony Hightower is one of them, what they did something that no one else did, they did something we never did in our clinical trials. And so I got to talk to them. And I realized we just didn't dose it properly. So you go back to the development of the product, a lot of the challenges were under dosing because everybody's trying to compare one to one to injectable insulin, and therefore one of underdosing patients, and therefore, they got equal outcomes didn't do any worse than injectable insulin per se. But could they have gotten better outcomes if we dosed improperly? Right? And I think that's, that's the state of we're now trying to generate to show that the kids buddy now be head to head, or if he knows him properly, what happens? Right, and that's we're really focused on right now.
Stacey Simms 26:01 Is there anything that you wanted to talk about that I haven't answered?
Mike Castagna 26:04 No. I mean, we're only available in the US, we're in the process of going to Europe. So I don't know if you have any. Yeah, we do. Though, so I know, we have patients on a name patient basis in Germany, and UK and Italy. So you know, their governments are actually important a president and pay for it. We're in the middle of filing for Australia. We were approved in Brazil, and we're going to India so so you'll see this more and more around the world. You have listeners in those markets. There's not gonna happen this year. And hopefully, the next year or the following year in some of these markets, we'll be looking at bringing it to more patients in those markets.
Stacey Simms 26:37 Well, and just got a big approval here in the United States for Medicare patients. Right.
Mike Castagna 26:42 Yeah. So that one, I, you know, we get a lot of questions on that one. And so you know, this market CGM patients were told you need to be injecting yourself, I think four times a day, we couldn't get your CGM. So then doctors were not getting patients Afrezza. And so we were able to ask CMS to change that, and they did to the year but rather haven't done they're not done. And so here we are a year later that that policy is now being updated. I want to thank CMS and all that you're helped make that happen. And I think it helps in people in CGN, because I understand that removes some of the other requirements to get CGM, even an injectable these patients so little mankind was the one who started that process. And then we're able to help a lot more people. So it's great. And we're trying to get Medicare $30 a month insulin. So we have Medicare listeners. And you know, we're trying to make sure we help get patients access that are on Medicare. I think that's important.
Stacey Simms 27:33 That doesn't stack up in terms of cost in the United States.
Mike Castagna 27:36 Yeah, I mean, you know, fortunately, the billion dollar debacle in this country is drug pricing, as we all know, and as a pharmacist, I know firsthand when people go through an LMS they're on how many co pays are on. And so we really have tried hard to make sure that no patients pay no more than $15. So we have copay card programs, we actually have a free drug programs, they really can't afford it, we'll give it to you for free. If you're going through the prior authorization process, we give it to you for free while you're going through that. So we all want payers and reimbursement to be the excuse of why a patient can't get access to our product, we think that people will do well on our product, we're willing to take that bet that they'll see good results. And if they see good results, the payers will usually pay for it. And it says you may or may not know that there's a monopoly in diabetes between two insulin players, and three payers, who are all working together to make sure there's no competition. You know, that's unfortunate, but they pay to make sure that patients have a difficult time getting Afrezza . And that's always one of my frustrations of competition or diseases. You know, 400 years, we've seen the precise the dispensing from 20 hours a while 95 and let's say miles, hundreds of dollars. You know, for me on the payer side, we want to make sure patients we try to bring it down to about $15 on commercial and Medicare, you know, they generally pay comparable to what they would and some Medicare plans a little bit higher I can you know, that's a hit or miss when you when you go to submit for reimbursement, but we try to do everything we can to make sure people will have access to our product
Stacey Simms 28:57 $15 for $15 for commercial patients, no, no, but what is it? What is it for? What do you get for $15? Is it a month? Is it a
Mike Castagna 29:05 my week? Yeah, whatever, whatever. You gave two boxes, three boxes, whatever is on that prescription for that month,
Stacey Simms 29:10 for the month. Okay, I didn't mean to interrupt you.
Mike Castagna 29:12 I don't think I know, I was gonna say I forgot we actually have a cash pay program. And people are paying cash for their insulin. And we do see several 1000 people a month paying cash for injectable insulin, we have influenced savings comm where it's $99 a month for frezza. And you know, can you a bigger box or more doses, you might pay 199 but we tried to make the cash price, you know, roughly $100 a month. If we if you had no insurance, for example.
Stacey Simms 29:37 I'm not sure you can answer this question. But I will ask it anyway, is the biggest challenge for you all the failure of exubera? Is it just people not knowing what this is? You know, as you move forward, you know, what is the big challenge to get more people to adopt us?
Mike Castagna 29:51 I mean, for me, the biggest challenge are the doctors. We created a program we basically gave it for free to patients for two years for 15 bucks. Like no no priority. Nothing, we just charge you $15. And that didn't change a lot of doctors from jumping on board. And doctors just don't know our data. And so they think this product doesn't have a lot of data behind it. And they don't know our data, they don't know. Like when I would ask a doctor, how fast from the time you inject your bolus, your pump to the time you look on a CGM, that your institute sugars are coming down, and I get in these endocrinologist, I'll get five minutes and mediate and 20 minutes an hour, the answers, I need 90 minutes, 220 minutes, that's the answer. And so they don't even know the pharmacokinetics and pharmacodynamics differences between injectable insulin inhaled, and then you have doctors, right, you know, calling some of these ultra acting drugs faster, we'll look at the package inserts, they're no faster than their old products. And there's a lot of misperceptions out there some of these newer launches of old tracking insulin, and to me they're, they're really not that much different than the predecessor and look at the data, you know, there's not a faster, there's not dramatically faster onset or offset or, you know, a one c lowering or weight gains on very much the same. So, no, I think it's just a matter of doctors trying to really understand the data.
Stacey Simms 31:02 Before I let you go, are there any plans in the future to change anything about the way it looks? or different colors? I mean, I know it sounds kind of silly, when you're just trying to get people to adopt the new technology, but from a user standpoint, and look, I know, you've heard all the jokes of my friends who use this will make you can't comment on designers. They don't say anything, they'll make comments like, you know, taking a hit or whatever, right? I mean, it's it's inhaling, it's this little thing that you're, you're inhaling, it looks a certain way. I'm curious if the cosmetics of it are anything that are on your radar, or needs to be improved even?
Mike Castagna 31:36 No, I mean, I think when you spend, you know, $3,000,000,000.20 years doing a new drug development or taking 100 year old product and reinventing it, you had to get that right in terms of device design and airflow dynamics and consistency. And those. And I think all that's really important because, you know, misperception that oh, my God, it's going to be less can be more variable than injectable insulin. And the data just doesn't support that statement. And so for us, we have one of the world's most unique installation platforms across the entire pharmaceutical industry, we deliver more power to the lung, the most technologies out there. So that's why you can get consistency, those two those, and you don't have a lot of variabilities, because our technology and our device is called a low velocity inhaler. And what that means is there's a resistor that helps slow the powders as they're coming out of the inhaler. So they get deep into the lungs. And that's why you get that nice absorption curves that we see. And we're most inhalers or high gloss inhalers. So it's just enough sucking air as hard as you can, and hoping you get you know, 20 30% of lung drug into your lungs, and mostly stuck in your teeth to device in the back of your throat. That's most dry powder inhaler technologies out there today. And so that's something unique to us and our technology and our device, they all work really well together, you couldn't just take our powder and put into another inhaler, and or just as well would not work. So yeah, we're pretty happy with the device I we are going to other diseases. So you know, we're we're going down to the FDA with our partner for an approval in October for pulmonary hypertension patients. And we have several other orphan lung areas we're going into to help more patients with lung disorders. So you know, I think that's important, like our, our technology, our inhaler, our platform is gonna be used in more and more patients over the next decade than just diabetes.
Stacey Simms 33:13 Well, that's what I was gonna ask is, if it works, so well, you know, will you partner with other medications? That's great to hear.
Mike Castagna 33:18 Yeah, you know, we're really busy, we probably have about 10 to 12 formulations of products working on this year and five marone products in the pipeline. And so it's it's a really good time of mankind, we're super excited to be here. And it was a turnaround, the company struggled for many, many years. And we're on our way to success. And I think, firstly, you'll be you'll be hearing more about it. So I know it's been a long time. And maybe you didn't talk to us yet. But hopefully you'll talk to us more and more as we continue to generate new data and more more patients start using it.
Stacey Simms 33:45 I'd love to, I'd love to, especially with the kids programs. And like I said, I've got a 16 year old who is very curious about this. And, you know, once once safe and effective. Once we get all that safety stuff in here. It's mom says, you know, I'll definitely I know, I would like to check it out. So I really appreciate you coming on and spending so much time with me and my listeners and explaining all this and we'll definitely talk again. Thanks, Mike.
You're listening to Diabetes Connections with Stacey Simms. More information at Diabetes connections.com. Always on the episode homepage. I also have a transcription as well, sometimes those podcast players don't display the show notes and the links. So if you have any trouble, just go back to Diabetes connections.com. And I just want to say that I did reach out to have Mike or somebody from Afrezza on the show. And you heard him say, you know, it's been a while, um, you know, it just took a while to connect to the right person. Let's just say that, and I will have them back on because lots of good stuff is happening. As you heard. I want to take a second and kind of explain Monomeric insulin and, you know, I'll be honest with you. The scientific points here are really not my strong suit. I'm a communications major, right. So I did what I always do, and I am People who know a lot more than I do to help me explain it. I went to the Facebook group Diabetes Connections as a group. And you know, I said, How do you explain monomeric insulin I know it's faster. And Tim Street, who is just wonderful and runs the diabettech.com page that's like diabetes tech diabetic, and I'll link that up as well. He provided this explanation, which really brought it home for me, and boy, I hope I'm pronouncing everything correctly. So Tim wrote, insulin naturally links its chains together to form stable molecules. Typically it connects two together and then links three of those two chains together. Additionally, to create six This is highly stable and described as hexameric. In order to use these chains, you have to break the molecules apart to single chains, which are monomers. Typically fast acting insulins are stored as dimers, two monomers connected, which are easier to split, then hexamers. by storing the insulin as a single chain, a monomer, the body doesn't have to break the chains to instantly use the insulin molecule it receives. And that is why Afreeza wraps the monomeric form in the capsules, to make it ultra fast. Thank you, Tim, that actually made a lot of sense. I gotta tell you, we have the smartest people and the kindest people in this Facebook group. If you're not there yet, and you want to join, come on in, I highly recommend it. You don't have to be a Tim Street. You don't have to be able to explain these concepts. You do have to be nice. And you do have to not post a lot of drama. I'm very tough on my diabetes groups. I run two of them. They're very nice and friendly places for a reason. But Tim, seriously, thank you so much. That was a great explanation. And I really appreciate it. Diabetes Connections is brought to you by Dexcom. If you're a veteran, the Dexcom g six continuous glucose monitoring system is now available at VA pharmacies in the United States. Qualified veterans with type one and type two diabetes may be covered. Picking up your Dexcom supplies at the pharmacy may save you a lot of time to connect with your doctor for more info Dexcom even has a discussion guide you can bring with you get that guide and find out more about eligibility. It's all@dexcom.com backslash veterans, and all the information is always at Diabetes connections.com. Before I let you go, just a quick note about back to school, I have never done less. I packed up a bag for Benny to bring to the nurse. He brings his daily supplies with him every day in his backpack. But of course, like most people, our nurse has backup supplies for him. So I put those together. He brought them in along with our plan or orders, you know from our endo. And that was it. I haven't set foot in the building. I'm not sure when I will go in or if I will go in probably when you forget something or they run out there. But I've never done less work. You know, I did a lot of work over the years to go to school and meet with people and he's got it. So not much to report. It feels very strange. All right. Please join me this Wednesday when we have our in the news live on Facebook every Wednesday at 430 and then we turn that into a podcast episode. I love doing that. It's been a lot of fun. I hope you're enjoying it. Give me your news tips. If you've got any from this week, just email me Stacey at Diabetes connections.com thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.
Benny 38:27 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 24 Aug 2017 | Protesting the High Cost of Insulin | 00:38:04 | |
#Insulin4All is a campaign to bring attention to, and do something about, the high price of insulin. Stacey talks with T1International's founder and director Elizabeth Rowley about what the organization is trying to do and how we can all get involved. A demonstration is planned in front of Eli Lilly and Company international corporate headquarters in downtown Indianapolis, Indiana Saturday, September 9th at 1-3pm. There's also an online day of action on September 8th. Find out more about the movement here. Join the #Insulin4All event Facebook group ------ Get our App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Sign up for our newsletter here As always, thanks for listening!!
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| 15 Nov 2022 | The Future of Long-Term CGM Systems with Senseonics CMO Dr. Fran Kaufman | 00:39:21 | |
Eversense is a CGM that goes under the skin and stays there for up to six months. The company that makes it has big plans to make that time period longer and to make the sensor even more accurate. Stacey talks to Senseonics Chief Medical Officer Dr. Francine Kaufman. They had a wide ranging conversation about everything from sensor length to interoperability and working with different pump systems as well as access and so much more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 12 Jul 2023 | How we sent our 16-year-old son with T1D six thousand miles away - without us | 00:50:30 | |
My son Benny is back from a four week trip halfway around the world with a non-diabetes camp program. He says it was amazing! To be honest, I had a really hard time with it. This week, we share how we prepared, what went wrong, how Benny deals with feeling different on these types of trips and a lot more. This episode first aired in August of 2021 Previous episodes with Benny: Benny & Stacey talk untethered and more on their way to the endo Talking about Control IQ & addressing kids' questions about diabetes Ten years of T1D - our whole family speaks up This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 01 May 2020 | Chris Wilson: Helping People With Diabetes Stay Connected On Facebook & Beyond | 00:49:15 | |
Chris Wilson helps run some of the largest diabetes technology groups on Facebook. He's also always on the lookout for the latest news from these companies and very involved in clinical trials. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, a middle school 3D printing class helps out a 9 year old with type 1 and a running event goes virtual & big Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Check out Aaron Kowalski's virtual run Twitter thread here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Episode Transcript Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By real good foods real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27 This week, Chris Wilson helps run some of the largest diabetes tech groups on Facebook. It turns out he's also very involved in clinical trials. This one for a new emergency glucagon,
Chris Wilson 0:39 kind of an interesting experience. They hook you up to IV and so on and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens.
Stacey Simms 0:52 Chris tells us more about participating in trials. Staying on top of diabetes news and bowling in San Jose. Tell me something good. A Middle School 3d printing class helps out a nine year old with type one. And a running event goes virtual and big. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am so glad to have you along. I'm your host, Stacey Simms. And you know, we aim to educate and inspire about type one diabetes by sharing stories of connection here. How are we doing these days? I gotta tell you, I'm having good days and some rough days. I think like everybody out there. I don't know. I feel like I'm not doing enough. Right? I have this weird feeling some days where it's not like I'm not doing enough in my house, which I am not because we moved to a new house at the beginning of March. I know great timing. And so when I tell people that they're like, Well, you've had so much time to set things up and get organized. I kind of Yeah, I guess We haven't really jumped right in and set everything up the way I think we might normally do. We certainly have the time. And many rooms look very nice. Many rooms still have stuff in boxes. Because I don't know, there's there's some days where I have a lot of urgency. And I feel very efficient. There are some days when I lie on the couch and watch YouTube all day. So I'm trying to be kind to myself, like I always advise everybody else to be, you know, I don't think this is very unusual. There are some people doing amazing things out there. I mean, I don't so, you know, I'm trying to figure out what I can do. I'm trying to serve the diabetes community, certainly, but you know, I think we'll find ways to help as we move forward here, certainly in my local community as well. But I was talking to my kids about school. My daughter was concerned about the number of credits she was able to register for, I mean, long story short, like a lot of colleges out there. They're making some changes they're adjusting. No decisions have been made yet, but the way that people registered for classes changed a little bit. And so she was really concerned about Getting the number that she wanted as an incoming sophomore. And I said to her, you know, why? What's the big deal? Because this school year may look totally normal. Everybody may go back to college, everything's fine. You know, who knows? It may look extremely different. Nobody goes back to college, they continue online learning or they get there and things change. I mean, who knows what's going to happen this fall? So all we can really do is act like it's going to be, quote, normal, register for the classes that you can, but expect the unexpected and realize that, you know, maybe you'll take some summer classes. Maybe you won't graduate in exactly four years, which horrified her you she's a very good student. And I was able to say to her look, did you have big plans for 2023? Yes, she's not on a set schedule, which kind of made her laugh, but also made me realize I've got to be more kind to myself, too. I mean, the podcast is not getting out on Tuesdays, like clockwork, as it has been, and I very much pride myself on that schedule. I think it's Hey, to let these things go, right. I mean, we want to come out of all of this with our mental health as best as it can be. And if that means tonight, I need to watch the what's up with that skit from Saturday Night Live on repeat, because and if you haven't seen this, I'm not really into Saturday Night Live lately, but I saw the one from home. I laughed so hard at the what's up with that, and I couldn't believe it was an ongoing sketch. It's so stupid and so funny. And it was just remarkable. And the one with Zach Galifianakis where he's playing the flute, I'll link it up in the show notes. That's how much I left and it's so dumb anyway. But if that's what I need to do that night, I'm going to let myself do that. So a long way of saying, I hope you're hanging in there, I hope you're not being too hard on yourself. For You know, when we went into this, we all thought I'm gonna organize my house and I'm gonna work out every day and you know, there are people doing wonderful things, but it's okay to do ordinary things and be there for each other and just come out the other side of This was a feeling that we made it through. I keep reminding myself we're doing something important by staying home. Right. That's how we're helping. One thing that really has helped me a lot through this is doing some of these live events and chat events and just the zoom calls. I've been doing a bunch lately, had a lot of fun last week doing the world's worst diabetes parent meetup. That was amazing. Thank you Project Blue November for letting me do that on your page. We got a great group chat with some parents told our mistake stories and gave away some books gave away some amazon gift cards. I'm doing stuff this week with the college diabetes network. And of course, I will be doing the 300th episode taping. As you listen, that will be Wednesday. So I believe this episode is going to be coming out either late Tuesday night or Wednesday morning. So Wednesday, April 29. I will be live on Facebook answering your questions and talking about the diabetes community in June of 2015, which is when I launched the podcast holy cow So that's the episode 300 taping. Okay, all right, getting to Chris in just a moment. Diabetes Connections is brought to you by real good foods. And last night Ben he came downstairs and said, Hey, do we have any ice cream? And we're at the point of this where we have quite a lot of ice cream we have, but we didn't have what he wanted. We had like regular I think my daughter had some Ben and Jerry's. We had some mini ice cream sandwiches, but he wanted the real good foods ice cream that I've talked to you about. And I said, I think maybe there's some in the garage freezer and he went and looked and there wasn't any love, so I have to order some more. And as I'm looking right now there is a sale 20% off on their ice cream, so I forgot to get Benny's order today. He really liked the peanut butter. They have the super premium peanut butter chocolate chip ice cream is so delicious. I happen to be a big fan of just the chocolate and my husband likes the mint chocolate chip. We didn't try the salted caramel list. I'll have to put an order in for that. This ice cream is so tasty. It's not like that. A lot of lower carb ice creams, you know that chalky kind of chunky weirdness that you can get sometimes, but this is, as they say, a real ice cream experience with real ingredients, low sugar, 200 calories per serving, they list all the ingredients online so you can read everything that goes in it. And of course, when they ship it to you, they ship it in a cooler with dry ice when we got our first shipment of ice cream. It had we're in North Carolina, we're in Charlotte where it's already warm. I know it may have just snowed where you live, but it's been beautiful here and when we got our first shipment, the ice cream is frozen solid. They do such a great job free shipping on orders over $50 just go to diabetes, connections calm and click on the real good foods logo.
My guest this week is well known to a lot of you who are on Facebook, or maybe his profile picture is you may not actually know too much about him and that's why I'm talking to him today. Chris Wilson is one of the admins for two very large closed Facebook groups. We're talking thousands of people in these groups all about tandem and Dexcom. Well, if you're not familiar, and I know some people still aren't on Facebook or have left, you know, an admin is somebody who may have created the groups, but is always there to make sure things run smoothly. They can add or remove people or kick you out for bad behavior, that sort of thing. I run two groups on Facebook, and it's a lot of fun, but it can be a lot of work. And Chris always seems like he knows an awful lot of behind the scenes stuff. He doesn't work at tandem or at Dexcom. He gets asked that a lot. And we also talked about his clinical trial experience. I didn't realize like he had so much to say about that was very interesting. So here is my interview with Chris Wilson. Chris, welcome to the show. Thank you so much for jumping on to talk to me. I really appreciate it. Well, thanks for the invite Stacey. You know, it's one of those situations where I feel like I know you because we talk on Facebook all the time and I see your posts and you know, I read the valuable information you provide And then
Chris Wilson 9:00 I realized as we were recording as I, as I hit record, I don't really know that much about you at all. I'm not sure I've been less prepared for an interview in a long time. So I appreciate you writing this out with me. Well, I mean, that's kind of the the nature of the the online community is we interact with people, you know, we get to know them, at least in one aspect of their lives, but somebody that you've never met in person, you never had a chance to sit down and have a drink with or whatever. So,
Stacey Simms 9:29 well, I'm gonna start with a very hard hitting question. I did my research and I looked you up on Facebook. And it was very difficult because we're already Facebook friends, but it does say the last time I wore shoes was January 2015. Is that true? And if so, what's with the not wearing shoes?
Chris Wilson 9:47 That is true? It just sort of I mean, I wear sandals.
outside the house, it just sort of happened by accident. My job's done. don't require me to, you know, wear close toed shoes or anything I live in Southern California on a really cold night in the winter it might get down into the 40s there's you know, no real need to wear close toed shoes and insulate one's feet.
Stacey Simms 10:18 All right, okay, so I have a much better mental picture of your day to day life. No close toed shoes do formal wear. You're not going to the office with a briefcase.
Chris Wilson 10:28 Right? I even actually have a pair of custom made bowling sandals that I use for bowling.
Stacey Simms 10:33 You do not you? I do. Can you post a picture of that when we do the when we hear this? Because that just sounds like you never got hurt wearing them
Unknown Speaker 10:42 now. Oh, man. That's funny.
Chris Wilson 10:47 Well, when I had the idea to do it, because bowling was at that point, the only time I was wearing shoes, and I sort of had the idea of Hey, I could you know, take the soul off of these a tournament a bowl of cheese, replace it with a bowling soul and be Half of my friends said, Oh, that's awesome. And about the other half said, That's the dumbest idea I've ever heard in my life.
Stacey Simms 11:07 Well, now that I know you're not getting hurt, I'll refrain from commenting, but I'm what my initial reaction was. Okay, so we're going to talk bowling, we're going to talk all sorts of stuff. But let's start with diabetes, which is really kind of how we know we found each other. Certainly, Tell me your story. When were you diagnosed?
Chris Wilson 11:26 I was diagnosed my freshman year of college. Oh, wow. I had and I was probably starting to really get the beginnings of symptomatic as I was leaving for college. But you know, you go away in August and I went to school 3000 miles away from my parents on the other side of the country, and so no interaction with them. You know, they didn't see me for anything like that. And I started losing weight in the classic symptoms thirsty all the time having to go to the bathroom all the time, but you never crossed my mind that something that could be diabetes. This lasted all the way until Thanksgiving. I went to go see my grandparents for Thanksgiving. And my grandmother took one look at me and said there's something not right with you. My grandfather was type two. So he had a meter and two mornings in a row, they prick my finger and got readings in the three hundreds. And I went to calling the advice nurse for my health insurance and said, you know, hey, what should I do? I'm from California. I'm in DC going to school. Right now I'm in Pennsylvania, my grandparents house and they said, stop whatever you're doing, do not pass go do not collect $200 get yourself to the nearest emergency room. When I got there. Actually, the meter wouldn't even read. They had to send my blood to the lab to get a blood sugar reading and it came back at almost 1000 milligrams per deciliter. And I was well into DK And the doctors looked at me and they said, We can't explain how you're alive, let alone conscious. Oh my gosh. And so I got to spend a couple of days they actually sent me to the pediatric ward even though I was an adult, because that's where all the people that knew type one were right. So I spent a couple of days in the hospital there my my mom flew out to come and collect me and they taught me how to give myself shots and prick my finger and everything else. And then after that, I went back to school when finished out the semester.
Stacey Simms 13:32 Okay, I have a couple of quick questions for you. Do you remember what it felt like when you got your first dose of insulin? I've heard that that's just an amazing feeling after you've been feeling lousy like that for so long.
Chris Wilson 13:43 Oh, it is it's you can almost like feel the the ketones leaving your blood is sort of the the way that I think about it. almost feel like pins and needles inside as things get really bad. And if it's happening slowly and building up, you don't necessarily feel it acutely. You just sort of build up a tolerance to it when they started me on the insulin and everything else it was just like this weight was lifted and I didn't even realize how bad I had been feeling until I felt better. Yeah, that's amazing. I
Stacey Simms 14:14 you know, obviously not living with diabetes myself I don't have I can't I can't relate to that at all. But I can only imagine how much better you must have felt. But then to go back to college, what was that transition? Like? Because I assume your mother did not move into your dorm
Chris Wilson 14:27 always wanted to? She did not. She made me tell my roommate and all the other people on my floor. What was going on? Some of them or were actually like oh, wow, cool. You know, you get syringes and stuff. It's almost like we're living with a druggie. Lots of joking about it, but at least the first couple years actually, it was almost like an extent I had a really long honeymoon phase. And so I didn't even really need it. You know, I gave myself the insulin and I ate when I was starting to feel hungry. You're low and didn't really even think about you know, managing intensely or correctly or the way that we do now. It was just okay this happened. We'll we'll deal with it. And
Stacey Simms 15:15 and when when was this What year was this? If you don't mind me asking? This was 1997 Okay, so before certainly before CGM, and well before a lot of people even had an insulin pump,
Chris Wilson 15:25 right he will log was I believe brand new at the time.
Stacey Simms 15:29 It is wild to think about that stuff. I mean, Lantus had just been approved pediatric Lee when Benny was diagnosed, we thought Wow, this is so cool. We get to use this new insulin that just got approved. You know, it was really it's amazing when you look back on it. When did you start getting interested in technology and I say it like this because I assume you are pretty interested since you run these these groups now on Facebook.
Chris Wilson 15:50 I didn't pay too much attention to it because for the longest time, I was surviving uninsured haha and the over The counter Rnm I actually couldn't get to a Walmart. There wasn't a local Walmart. I was getting it from CVS in the basement of the Watergate hotel, if you believe that. That was the the local CVS. Wow. And that was just, you know, kind of what I knew. I mean, even at that point, anything newer than that, the more modern analogs and stuff like that was just prohibitively expensive without insurance. So I figured that out, I figured out you know, which meter had the cheapest test strips that I could could get and I didn't test nearly enough wound up in it DK and hospitalized briefly, once during that time, although not entirely due to the insulin regimen. My parents had come to visit me and I, being a impetuous college student got mad at them and decided I was going to take a road trip so I hopped in my car and drove to Florida from DC without any insulin. By the time I got back, I was feeling pretty awful and went and checked myself into the yard.
Stacey Simms 17:00 I feel like I want to say something. It's funny, Chris, as a parent, I'm, you know, I hold my breath when I hear stories like that, but as someone who's talked to people with diabetes for a long time now, so many people have done things like that it's just life, you know, and if you as you're listening you're I could never imagine, you know, things happen, right? It's nobody's perfect. So I'm glad you were okay. That is kind of scary.
Chris Wilson 17:24 Well, I wouldn't do that now. Oh, of course. I know. I know a lot better. Now.
Stacey Simms 17:28 Of course, when were you able to get insurance and then to get you know, a pump or CGM and everything that you have now. Right back to Chris in just a moment, but first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you Get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions are Kobe's required. One less thing to worry about not that surprising. When you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections comm and click on the One Drop logo. Now back to Chris talking about when he was able to get coverage for what he really needed.
Chris Wilson 18:39 It was with the ACA when in fact, I had actually looked at insurance options briefly and the one insurer in because I've moved back to California by this time, the one insurer in the state that would even offer me a policy quoted me a premium that exceeded my gross income once the ACA went into effect and they couldn't raise the premium Just because I had type one diabetes, all of a sudden it became an option and you know, we went through the the standard of Okay, we're not going to do the the regular the mph anymore, we're going to get you on lattice and get you on human log. And after trying that and tweaking things here and there and figuring out what worked and what didn't, and they decided that really, my basal needs fluctuated so much throughout the day that I needed to, to be on a pump. Then after I was going through, I don't know 1015 test trips a day cuz I was testing about once an hour, trying to catch the spikes and dips and figuring out where things were. And I was regularly having my blood sugar dip into the 50s and 40s without feeling it. At that point, my endocrinologist looked at me and said, You know what, we should probably put a CGM on you. Hmm.
I said, Okay, yeah, let's let's do that.
Stacey Simms 19:58 What did you think? When you got on Dexcom,
Chris Wilson 20:01 my first thought was, oh my god, this is amazing. I can actually, you know, see, maybe not quite in real time but basically close enough what's going on and where I need to make adjustments to things that are crucial say, you know, make knowledge your superpower. And then a lot of ways it really is. And that kind of actually dovetails in with my job because as an IT consultant, I do a lot of working with data and data analysis and stuff like that, and actually having enough data to be able to analyze it and then make changes based on it. Yeah, was almost a perfect fit.
Stacey Simms 20:40 So how do you get from being you know, a regular guy, work for yourself and you're on a pump and you're on a CGM, taking care of yourself. You're doing well to suddenly having thousands of people in these Facebook groups where you big Facebook guy from the beginning?
Chris Wilson 20:54 Well, I've actually been on Facebook. Basically since there was a Facebook. I was in college. We were, I want to say the fourth or fifth school to get Facebook. That was number one was obviously Harvard, that Stanford was second. And then they started expanding to two other schools. And where did you go to
Unknown Speaker 21:15 college? I don't know that you said it
Chris Wilson 21:16 was it was George Washington University. I see.
Stacey Simms 21:19 That's funny. I mean, I went on, I got on in 2008, which I thought was really early. If you go, there's no record of that. Because long story short, I messed up my Facebook when I left my old job at the radio station, and went from like a friend to a pub, whatever I did, I messed it all up. But I was on in 22,008. And I thought that was early. But oh my gosh, you've been there really? Since the beginning?
Chris Wilson 21:40 Yeah, I want to say it was like 2001 or two, when it was the Facebook when it was the Facebook. My endocrinologist actually had encouraged me to when I was even just starting to research pumps, and then CGM and the other things. I was encouraged to go online, find user groups, do some research. So I joined initially the the tandem t slim pump group. And as I got better at using it and more familiar with it and figuring out how things worked, and at least the best way to do things for me, I started answering more and more questions. After a few months of that, I think one of the, the original admins of the group asked me if I would be willing to help out with admitting and you know, making sure people didn't do things that violated the rules and answering questions and stepping in when incorrect information was given out, and that sort of thing. So that happened, and not too long after that happened. Then, when the G five came out, one of the admins of that tandem group started the G five CGM users group. She sort of tapped me to come in and help out with that. So that's sort of how I wound up there. I mean, both of the groups have have grown significantly since then. It used to be that we, you know, let anybody post whatever they wanted pretty much. It that's, you know, had to be clamped down on somewhat just to keep things orderly.
Stacey Simms 23:12 What's the what are some things that people should know about Facebook groups? Like, is there anything that's kind of behind the scenes stuff that would help us either post better or use them better? Or they just drive admins crazy.
Chris Wilson 23:24 One of the big things that that gets me at least is Facebook is not Twitter. There's no character limit. You don't have to cram whatever question it is that you're asking her describe the situation in 140 or 280 characters or less, you know, by all means, use lots of words be as descriptive as possible, because sometimes in there, there's a little curl that have a little nugget that gives away what the actual source of the problem that person is having is the other
Stacey Simms 23:56 thing that was really interesting. We saw this so much with control IQ When it first came out was people don't search the group to see if their question has already been answered. I mean, I run to smaller groups, and they're usually really great. But that's kind of drives me crazy.
Chris Wilson 24:12 It used to be, it drives me crazy less, because I've just kind of learned to shrug it off. In large part, it's a function of just the way that Facebook's algorithms and ranking in the way that it orders the posts that people see works. Facebook's always trying to get the most recent stuff up at the top, or the stuff that it thinks you might be most interested in based on stuff that you've interacted with in the past. And there's, I'm sure tons and tons of algorithms and things that go into deciding what you see and when. And it's not even intuitive, especially looking at it on a phone or on tablet versus on the desktop website. There's even really a search to group option in a lot of cases. And there are Tons and tons of people that do search that that's one thing. But the people that do search, almost never actually post a question because they get their answers by searching the group. So those are the people that that we frequently interact with. It's you know, and you, you wind up seeing somebody posts a lot, because they've never realized that there's a search function. Good point.
Stacey Simms 25:24 So when control IQ came out, and this is particular to the tantum group, like hundreds of people, thousands of people, it seems like came into that group. Was it that many or is it just, you know, I'm sitting on the outside wasn't really that many people,
Chris Wilson 25:37 I want to say, because the group's kind of, you know, had a long steady growth. But I want to say for especially that few months when it was approved and not yet released, and then right after it was starting to roll out, there was definitely a spike in interest. We were seeing the group grow at almost three times the rate that it had been before that Wow.
Stacey Simms 26:00 So if you don't mind, let me ask you about your experience with control IQ because there's still you know, certainly a lot of people who haven't who have tanto haven't tried it yet. And there's a lot of people who've listened who haven't switched over to it, you post a lot of, you know, very publicly posted about your experience. How's it going now?
Chris Wilson 26:16 It's so going along, okay, I've actually backed off because, of course, when it was new, I'm paying attention to it all the time, right? I'm looking at it, I want to see what it's doing. I want to see why, you know, see if I can figure out why it's deciding to do what it's doing right now. Now, I've gotten to the point where I trusted enough that I frequently just let it go. And sometimes that means that I don't catch or foresee something that I would have otherwise. So my time range has dropped back down a little bit from where it was I'm not running, you know, 9597 90% time and range. It's closer to being in the low 90s still, but a slacker in all honesty The low 90s is fine. And my average blood sugar has come down significantly. And the biggest thing that I was anticipating getting help with from it, I'm still getting out which was gone phenomenon. I'm still seeing that improvement. I'm not as a general rule waking up at 180 or 200. Even though my basal rate doubles before I wake up, Wow, it's so definitely helping. And I've kind of decided I'm gonna let it go and try to be a normal user, not a someone who's focused on it all the time, and sort of see how that rides out.
Stacey Simms 27:38 I think that almost in a way, it's better. I think that and I have because I have a 15 year old son, who is very responsible. I mean, I don't want to put him it's gonna sound like I'm putting him down. I'm not he's very responsible. But truly being a person who really would prefer to never touch this pump again, has helped him so much because I know people who overreact everything and they're not doing as well with control like you He bonuses for food and then leaves it alone. And you know, four or five hours later, he'll be like, Oh, yeah, it's good. You know, he doesn't, you know, and I'm not I'm not checking him as much as I used to because he's a teenager. But it's amazing. When you would let it do its thing if your settings are right, which is a whole other story. It really works out great. So, you know, we'll see how it goes for you. But I think that you know, anything you can do to think less about diabetes is also very nice.
Chris Wilson 28:23 That's right, it gives you you know, more time to think about the other things in your life.
Stacey Simms 28:27 So let's talk about other things in your life. You're okay, so you bowl, you're an IT guy work for yourself. There's some surfing stuff in your bio, do you surf or is that a company that you work with?
Chris Wilson 28:37 It's primarily my biggest client is a nonprofit organization that focuses on ocean waves of beaches that includes access for recreation. So there's a lot of surfing related stuff there. I can surf I have served. I'll be honest wearing a pump and CGM is is not necessarily conducive to being out in the water recreating, I would need to figure out some sort of untethered regimen or something if I wanted to do it regularly, I can at least paddle out and catch a wave or two and not get tossed around too much. But actually, the the big surfing thing is comes from my dad. My dad who's now in his 70s, you know, started surfing when he was 15 or 16. And still goes out and in surfs, usually two or three times a week at least when he can when we're not all under house arrest.
Stacey Simms 29:38 Yeah. Oh, that's great, though. That's really cool. Do they live nearby?
Chris Wilson 29:43 They do. They live about a mile mile and a half for me. Oh, that's great. So how
Stacey Simms 29:47 is everybody doing? I you know, I I don't know exactly when this will air but I assume it was it will not be at a time when we're all running around outside yet. So how are you holding up?
Chris Wilson 29:57 We're all doing okay. The nature of my job is such That I can largely work from home. Most of the time anyway, that hasn't been a huge impact for me. My parents have figured out Netflix and zoom, and doordash. And so they're adjusting to their new restrictions, although they still do get out and walk around and make sure they get their exercise in as well. So
Stacey Simms 30:25 well, who knows what it's gonna look like on the other side of this. So we'll just do what we can. But one of the questions that you I've seen you answer in the groups and I want to talk about is, you know, people sometimes think you work for them, or you work for Dexcom and you don't, but you get a lot of really good information. Can you talk to us about what you do? You know, how can lay people stay up on information from these companies, because it's all public, I assume the things that you're looking into.
Chris Wilson 30:55 It is, none of it's a secret. It's just a lot of it isn't well publicized. I pay attention to every press release that the companies put out. You know, I have one of the stock tracking apps and I have it set up to notify me whenever any of the companies on my list put out a press release, and it's not just Dexcom in tandem, it's insolate for the Omni pod. Medtronic psionics. Basically, almost anybody in the diabetes space, I try to at least keep up with what they're doing. I listened to the conference calls that they have for investors.
Stacey Simms 31:33 I salute you, because I have been on some of those conference calls. And they are so boring, but they are they have great information, but they are a slog, sometimes
Chris Wilson 31:42 they can be most definitely and if it doesn't work out schedule wise that I'm able to listen to the call. Honestly, sometimes I prefer to go back through and read the transcript after it's done. There's that I follow the diabetes media. You know, I read everything that gets Put just about everything that gets posted on diabetes mind or diatribe, or any of the other publications that sort of track what's going on in the diabetes world. And well, I do have some friends that do work for those companies living in San Diego or near San Diego, where they're headquartered is kind of inevitable, but they don't share any inside info with me or anything else. It's just a matter of really paying attention. I'm curious why you
Stacey Simms 32:31 do that. What is it that makes you so interested? Obviously, you have diabetes, you were the technology, but most people don't
Chris Wilson 32:38 follow it that closely. I think part of it's just sort of the way that I brought was brought up, I have sort of the the engineering bent to and that goes again, with with the job, but, you know, I like looking at things and taking them apart and figuring out how they work and how they're put together. And that's not necessarily always a option with diabetes technology. Although obviously the, the we're not waiting, the CGM, the crowd group has has done a lot with reverse engineering, what goes into these devices and how they're communicating with the radio signals and figuring out ways to sort of hijacks some of that to use for their own purposes, in ways that the tech wasn't necessarily originally designed to be used. But I've got some of that same sort of inquisitiveness about how things work. I mean, I remember when I was eight years old, I took apart my mother's computer that she had at home to install an expansion card so that I could attach a joystick to it to play games. And I remember being told that man, if you put that to get back together, if it doesn't work, you're not getting your allowance for the next four years.
And you were eight and it worked. And I was about eight and it worked. was safe there.
Stacey Simms 34:01 It's funny. But that says a lot. Right about being curious about, you know, having a knack for things. And for having the I don't know, there's something different about people who take a look at technology and say, I can do that. It's like you said that like the night scout people in the DIY crowd to be able to look at something and have the confidence or just even the curiosity to say we can make this better. I think that's really admirable. I don't have that. There's no doubt I'm, I'm scared of it.
Chris Wilson 34:28 Well, a lot of it just comes down to looking at it looking at what is the data is going into it, looking at what the actions are, that are coming out of it and figuring out what must be happening in between those because you don't necessarily have any insight as to exactly what the system is doing. But if you input a two and it gives you a four, and then you input a four, and it gives you an eight, and you input an eight and it gives you a 16. It's probably just taking whatever the input is and multiplying it by two and giving you the answer.
Stacey Simms 34:57 When you look at the technology and I No that, you know, who knows exactly what timelines are going to look like after this situation that we're all in right now? What's coming that excites you down the road for diabetes technology, because there's a lot that's on the horizon.
Chris Wilson 35:13 I think the biggest thing that I see and it's actually sort of already here is the option to be able to infuse multiple hormones both insulin and glucagon. Now that we actually do have a shelf stable liquid glucagon on the market, that being the G voke. from Paris, I would assume that Zealand's product isn't too far behind that since that's what's being used for the for the island with beta bionics. So we should have two options before too much longer. Hopefully, just having the ability to not just take your foot off the gas, so to speak, but actually be able to apply the brakes is I think, going to be a major thing and then going along with that and something that I haven't really seen talked about too much is Lily's faster humalog which I mean, that's one of the big challenges is always that food is fast and then slow, the slow. And so anything that that can be done to speed up the insulin action to get it closer to what you would actually seen that happen naturally when your pancreas dumps that insulin straight into your veins, I think gonna be a big improvement.
Unknown Speaker 36:26 You mentioned g Volk. Did I read you were in one of the trials. Did you talk about that at some point? I did. I've discussed it.
Chris Wilson 36:33 From time to time I do various clinical trials as they as they pop up. A lot of the research gets done here in San Diego, and if nothing else is an option to get paid for having diabetes, which is nice to have happen. Once in a while. I did participate in the phase three clinical trial for for the G Volk, where they actually compared it to the standard glucagon kit to prove that it was of equivalent efficacy. That was Kind of an interesting experience, they hook you up to IV insulin and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. And the sort of the cool thing was that they actually didn't make me take off my CGM when I was doing it. So I saved and screenshotted the data from the days that I did both the traditional glucagon kit and then the, the product that they were testing the G voke to be able to look at and sort of compare the two, but doing that kind of stuff. And I also did the G six clinical trial, proving that it was good for 10 days if you wore it and also that it would block at least up to a certain dose of Tylenol.
Stacey Simms 37:43 Oh, that's interesting. I didn't realize you're in that trial too. Did they give you a bunch of Tylenol?
Chris Wilson 37:47 It was thousand milligram pill of kill of acetaminophen. They had as a saw, I want to say it was you know, 15 ish people and all basically crammed into a clinic room. IVs in so they could do blood draws every five or 15 minutes depending on what stage we were in of the of the testing. And they were running them through the lab grade glucose meters right there in front of us and comparing the readings from the CGM because we were all wearing both the G five and Digi six so they could compare the two. That's wild. And it was it was basically controlled chaos for about six hours.
Stacey Simms 38:28 Yeah, I've signed up any for a few you know, to get into some clinical trials. But here in Charlotte, North Carolina, we really don't have the access. We could drive to Virginia sometimes sometimes there's some stuff in the Raleigh area, you know, the Research Triangle, but and the pediatric ones are hard anyway, but we'd love to do one that's really interesting. I'm going to tell them about that thousand milligrams of Tylenol in one pill
Chris Wilson 38:51 which actually isn't too much more than the extra strength the normal extra rectangle
Stacey Simms 38:56 so Oh, wow. I used I thought it was like 200 milligrams in one And then so it would be five. But I didn't think that the extra strength oh my goodness,
Chris Wilson 39:04 well, if nothing else, I mean the the clinical trials also give you a chance to have testing done that nobody would ever pay for as a normal patient. They're looking at all kinds of stuff I've done at various stages of research trials for other things where they're looking at measuring your resting metabolic rate. And they've actually got a giant plastic hood that they put over your head to measure how much oxygen is going in and co2 is coming out. And based on that they can calculate how fast your normal metabolism is running. And they'll do it under various conditions where they're running extra insulin into you and extra sugar to counteract that insulin in an IV. Under normal circumstances, I would never do think it was 100 gram of carbohydrate challenge to see what would happen but I do Did a trial where they did it before and then after giving the medication that they were experimenting with to see what the difference was how high did your blood sugar peak? How fast did it come down? And nobody would ever do that. They're laying in the bed and they're practically doing blood draws and you've got your CGM on and you can see exactly how your body responds to various things. And it was actually kind of cool because if I had not done that trial, I would not believe that in score lasted five hours in my body. Oh, yeah. But because I did that, I've now actually got documented proof that I can show that no, like, here's where I had the hundred grams of carbs and gave myself the the bolus of insulin. And I could then watch as the blood sugar's slowly comes down and tails off. And that was six hours of measurements. Well, I
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| 16 Jan 2024 | Should glucose be considered a vital sign? Molly McElwee Malloy makes the case | 00:45:53 | |
Why isn't blood glucose considered as, and monitored as, a vital sign? That's the question this week's guest is asking. Molly McElwee Malloy has big plans to change how hospitals and doctors are able to keep track of glucose. You may recognize Molly. She's worked at Tandem Diabetes and kept us posted over the years about Control IQ and other advances there. She’s got a new job and this big new goal. As always with Molly, who lives with type 1, it’s a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. our past episodes with Molly: https://diabetes-connections.com/?s=mcelwee Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 26 Jul 2016 | Glu's Anna Floreen Shares her Bionic Pancreas Experience | 00:52:49 | |
Imagine a social media network where what we say about our lives with diabetes actually drives research. It’s out there, and it’s called Glu. Outreach manager Anna Floreen explains what Glu, and the T1D Exchange are, and how they help researchers focus on what really matters to people living with diabetes and their loved ones. Anna was diagnosed with type 1 at the age of 6. She found great support at camp and recently took part in one of the Bionic Pancreas trials. She tells Stacey how surprised she was at how much of the mental burden of diabetes was lifted, and how difficult it was at the end of the trial to give that up.
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| 22 Apr 2020 | Fighting COVID-19 When You Have Type 1 Diabetes | 00:36:04 | |
What happens when you're diagnosed with COVID-19 and you live with type 1 diabetes? It happened to Patric Ciervo in early March. Patric shares his story, including how his diabetes reacted, hospital issues with people who don’t really understand insulin pumps and how he’s doing now. In Tell Me Something Good, a familiar name in the diabetes community, recovering from COVID 19 and now donating plasma, we salute more health care heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom.
Announcer 0:21 This is diabetes connections with Stacey Simms.
Stacey Simms 0:27 This week recovering from COVID-19 while living with Type One Diabetes, Patrick servo was diagnosed with the virus. In early March,
Patric Ciervo 0:36 my temperature started going down like a 101 to five times 5am it was about a 93 I woke up in a puddle of sweat, we call 911. Fearing that I was going into some type of shock
Stacey Simms 0:50 Patrick wound up in the emergency room with a committed he shares how diabetes was managed issues with people in the hospital who don't really get insulin pump And how he's doing now and tell me something good a familiar name in the diabetes community also recovering from COVID-19 and now donating plasma and we salute more healthcare heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of diabetes connections so glad to have you along. I'm your host Stacey Simms, we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two back in 2006. He is 15 now and a freshman in high school. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast I used to work in local radio and television news. Before I jump in with Patrick a little bit of housekeeping, we are fast approaching Episode 300 This is Episode 298. I have never made a big deal about numbering episodes because I don't know, it doesn't really matter what order you listen to the show in. I do number them internally just for organization, you know, keep track that way. And depending on what app you use, I know Apple podcasts will number them, you can see it right there in the app. Depending on what you use, it shows up or it doesn't. But we do have a very robust search engine on the website. And that does not rely on numbers. You just search by topic. And for me as I listen to podcasts, that's how I want to find previous shows, right? If I want to look something up, I'm gonna put the word into the search. I'm not gonna remember Oh, that was Episode 212, or whatever. I bring the numbers up though, because at 300 episodes, a lot of podcast apps start limiting what you see, when we get to 301 or you know, 350 or who knows 400 You're still only going to be able to see 300 episodes in the app. I'm not quite sure how many people are scrolling through to see everything. I am putting something new at the website you should be able to with one click to see all 300 episodes something unfortunately we don't have right now, because frankly, it just takes forever to load. But watch for that at diabetes, connections calm, they'll be a way to click and see all 300 episodes, if you're interested in kind of going back and scrolling through back to 2015. I should also mention if you subscribe on a podcast app like Apple podcasts, which is a really easy, easy way to listen to the show, if you listen through social media, that's fantastic. Listen, whatever, you know, whatever is easiest for you. But if you use a podcast app, and you subscribe, that 300 episode limit doesn't apply. you subscribe for free, I wish it was called something else. But when you subscribe to a podcast, it has nothing to do with buying a subscription or signing up for a subscription. You're literally saying to the app, give me all the episodes for free. So there you go. Gotta say a quick thank you for getting me to Episode 300. I'm so thrilled when we started I wasn't sure how long it would last. I certainly wasn't looking five years into the future. So thank you So much for listening for sharing these episodes and for frankly, becoming part of a community. We have an unbelievable Facebook group and I've connected so much with people over zoom and the chat over this time. I really appreciate it. So thank you for letting me continue to serve you. Diabetes Connections is brought to you by one drop. And I spoke to the people at one drop and you know, I was really impressed at how much they get diabetes. It makes sense because their CEO Jeff was diagnosed with type one as an adult. One drop is for people with diabetes by people with diabetes. The people at one drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. Imagine that one drop diabetes care delivered, learn more, go to diabetes connections calm and click on the one Drop logo.
My guest this week was one of the first people in his community officially diagnosed with COVID-19. And Patrick servo was diagnosed with Type One Diabetes more than seven years ago. So like you I had a lot of questions about what it is like to live through Coronavirus, while also living with type one. Now, of course, keep in mind as we're speaking here, every case is different. Every case of Coronavirus of COVID-19 to be specific, presents a little differently, some very mild, some much more severe, a lot of asymptomatic cases we hear about and type one diabetes kind of goes without saying on this show. Everybody handles that differently as well. So please remember that this is about Patrick. We can extrapolate some information from here. Frankly, I find it very reassuring. But at the same time, please talk to your healthcare provider. Don't jump to conclusions and I will link up much more information at diabetes dash connections. Calm the episode homepage in the podcast show notes. So here's my interview with Patrick servo. Patrick, thank you so much for joining me. How are you doing? How are you feeling
Patric Ciervo 6:09 these days? I'm feeling well, thankfully, my symptoms have been gone for a while. And yeah, I've been feeling good.
Stacey Simms 6:19 Wow. All right. So from where I sit, not knowing anything really sad. It just seems so scary. So I appreciate you sharing your experience. Let's back up. How did this all start? You've been living with type one we should say for for seven, seven and a half years now. So you're not exactly new to type one. But what happened in terms of feeling ill a couple of weeks ago.
Patric Ciervo 6:40 So basically, early in March, I had a busy weekend and everything. There was a work event on Friday, about where we went out because there was someone's last day, but I was running around Friday and Saturday, Sunday night. I was at my girlfriend's apartment and we were just beat from the weekend she works with me. So we were just beat from the whole thing. And she noticed that my body temperature had started feeling hot. But because we were both rundown, we didn't really think too much of it. So, the next day I woke up, I felt good. I didn't really feel bad at all, like maybe a minor thing, but nothing to worry about. So I went to work Monday, but that night, my body temperature was hot again, and her roommates a nurse, so we had a thermometer, and my temperature was 103. So we went to the primary doctors on Tuesday, I was tested for the flu, which came back negative Faker really diagnosed me with anything. I didn't mention Coronavirus, but he didn't think it was that he tested me for the flu again with a more accurate test but the test will come back the next day. So in the meantime, he gave me an A biotic and Tamiflu and told me to take Motrin Tuesday night, my temperature started going down like a 1012. By the time was 5am. It was about a 93. I woke up in a, like puddle of sweat, we call 911 fairing vows going into some type of shock. And I was in the car since then.
Unknown Speaker 8:19 So when you guys called for an ambulance, were you thinking this is diabetes related? or What did you
Patric Ciervo 8:25 think? Well, she had looked up and everything that diabetics have more like more of a chance to go into a shock from fever or something like that. So she was kind of the one pushing the 911 call. So we did that. I didn't think too much of it until a little bit later on. When I was like in the ambulance, I still wasn't feeling well. By the time I got the ER, I was feeling good, and my temperature was normal.
Stacey Simms 8:53 It's so hard to be the person in that circumstance, right? You're not thinking exactly clearly the person that called you know, is trying to figure out What's going on? When do you remember? Do you remember when they said okay, this is gonna be COVID-19
Patric Ciervo 9:06 they didn't they test me again for the flu in the ER, they tested again twice, and that both of them came back negative. We got the call from our primary the second flu test that he did came back negative, but I was already like things were back to normal, my temperature was fine. So they tested me for COVID as a precautionary, and because they tested me, they put me in the ICU and my own room and they want me to be there until the test results came back, which they were told would be the next day. I didn't get it back till that Saturday. I was in there on a Wednesday. Wow. But the doctors that would come in saw me like I was immediately getting better and everything. My only symptoms before the diagnosis were the fever and a cough. I didn't have trouble breathing, but they thought I looked good enough that they didn't think It was COVID
Stacey Simms 10:01 That's amazing. So you start feeling better and that's when you find out that's what you had.
Patric Ciervo 10:05 Yeah, I know. So I'm thankful I can't like I was already on the mend when I found out and it was a little bit before like all the craziness started in the world and so I didn't go in in too much of a panic state. When I found out I was diagnosed with it. There was still like a shock like, oh God, like diabetic and I've been hearing these things aren't good, but I was getting better each day. So after like a deep breath and everything able to get back to a good mental state.
Stacey Simms 10:35 I know everybody wants to know about diabetes and you know what you now looking back what you think of that part of it, but I want to ask before we move on, How bad was that test for COVID-19 you hear like it's really far up the nose is that How bad was
Patric Ciervo 10:49 it? Yeah, it was. It was exactly that out the nose and everything as they did in both nostrils, two different ones at once. It was not fun at all. You know, it was something I could live with and everything.
Stacey Simms 11:04 I'm sorry to ask. I just you know, I think about what how they test you for strep. Yeah, right. It's always like you gotta gotta gotta get it far enough to gag a little bit. Uh huh. Your
Patric Ciervo 11:12 nose. Oh my god. Yeah, it was pretty much yeah, exactly like that only your nose and I was like, flinching and everything. But it was totally doable.
Stacey Simms 11:23 And I know it's worth it. Please don't send me nasty emails like, yeah, it's just one of those things that I don't want to ask about. But looking back, what about your diabetes during that time? I think people do get very concerned about you know, treatment and blood sugar's you didn't know you had it. So it was kind of difficult or different to think about managing that way. But looking back, anything stand out?
Patric Ciervo 11:45 Well, in the hospital, my blood sugar was higher than normal. For the most part. I'm not sure how much of that was the illness related. I was very stressed in the hospital and could not move at all. So I think that also had part to do with it. Because I didn't have a problem coming down from the highs, there was nothing with my diabetes to think like something's off. I need to get checked out the days leading up to it. I've been fairly decent you know for the most part
Unknown Speaker 12:14 so you didn't notice any like really wacky high blood sugars before the diagnosis. No, no treatment, right like that.
Patric Ciervo 12:21 No, no. Yeah, thankfully.
Stacey Simms 12:23 So when you got the test back at the hospital You said you were already kind of on the mend. How much longer did you stay there?
Patric Ciervo 12:28 They released me Friday, and I got the test back Saturday. So I was self isolating just to wait for the test result. And then that's when I got the call.
Stacey Simms 12:40 What do they tell you after you test positive what happens next even at home?
Patric Ciervo 12:44 Yeah, they had given me in the hospital what to do if it does come back positive. They gave me a worksheet like to do less than everything. Just basically everything we've been hearing, you know, self isolate for two weeks. I think it was something like 72 hours, but two ways you can be like out of the quarantine is for 72 hours, you can't have a fever and other symptoms have to be gone. And the other one was or you have to get tested again, it has to come back negative. And I didn't get tested again. When I was at home quarantine. I only had a fever one other time.
Stacey Simms 13:21 So you feel pretty confident your past.
Patric Ciervo 13:23 Yeah, I did develop a headache and the quarantine.
Stacey Simms 13:27 So again, back to diabetes. Did you ever sound like the mom now? But did you call your endocrinologist and loop them in? Right back to Patrick as he answers that question. But first diabetes Connections is brought to you by real good foods. high protein, low carb, grain free, gluten free and terrific. If you're trying to eat keto, their line of foods just keeps getting bigger. We've been talking about them for so long. Now. I think when I started they only had pizza. Right, but now they have stuffed chicken breakfast sandwiches, you can get the pizza, just the crust, so you can kind of make it whoever you want. They have entrees. They are of course available in the grocery store freezers, but they're also so easy to get to your door, their whole line can be delivered. And they have a lot of specials right now. There's free shipping specials, but also on their website. If you sign up, you can get all the coupons and promos delivered directly to your phone, make it very, very easy. Find out more go to diabetes, connections comm and click on the real good foods logo. Now back to Patrick and I was asking him if he caught his endo when he was admitted.
Patric Ciervo 14:44 You know what, I had an incident in the hospital where when I got there, they asked me if I had an insulin pump. And I told them I did and they asked me if I wanted to like you know, administrate my own insulin. I said yeah, and there was a bit of a next up with The nurse who was under the impression she was giving me insulin shots, but they weren't not taking the fact that I already had insulin on board. And that, like they would not be calculating that. And so the insulin they gave me and they seem to not want to give me any type of basal insulin, they just wanted to do like check every two or three hours. If I was Hi, give me a correction. I didn't call my personal endo, because they're kind of hard to get ahold of. But I have a, I go to this camp for athletes with Type One Diabetes called diabetes training camp and the endo that has that, that ended that runs it. I texted him about that initially. And every day since then, he had texted me or called checking in how I'm doing. I told him my blood sugar's were high. He told me don't try to get to like 100 to 120. Don't aim for perfect, just as long as you're able to get to 140 to 180. You should be fine. I have any problems.
Stacey Simms 16:01 And yeah, I mean, that's one of the worries that I always have in the hospital. I mean, I'm there with my son being crazy mom. So you know, they're not going to give him extra insulin, but it's so frightening for you if you're there by yourself, which you had to be clear that up. I mean, I'm envisioning this nurse trying to give you a shot and you holding up your pump, you know, you're trying to ward her off. Did you argue with them?
Patric Ciervo 16:24 Uh, yeah, I mean, I'm not like, I like I don't like conflict at all and everything. But this was like, there was no way I wasn't standing my ground this and everything because I had like, four or five units on board, because I was trying to come down from like a 260 or something. And I'm explaining it to them, and explained that the doctor said that eventually they understood what I was saying after a few minutes. They said, All right, they'll talk to the doctor. And about 15 minutes later, they called me saying that the doctor says fine.
Stacey Simms 16:56 No, thank goodness. Do you use a CGM as well? Yeah. And did they let you kind of use that in the hospital? Did they insist on doing finger sticks?
Patric Ciervo 17:04 They did do finger sticks for their own record, they said, but that's all my phone. I was just going off that the whole time.
Stacey Simms 17:11 All right, so have you followed up with your endo? I mean, it sounds like you're on the mend. Doesn't sound like you needed to check in with him. I'm not trying to mom you
Patric Ciervo 17:17 right? Yeah, chicken. I mean, he was texting. We were texting and calling back and forth when I was doing the two week quarantine as well as my primary. My primary had called and everything I told him I had a low grade fever the one night he said, You know, sometimes that happens, I won't be too worried about it unless it's kind of a stays. And it the was one night and I woke up the next morning fine.
Stacey Simms 17:44 Alright, so I'm gonna ask you some personal stuff you do not have to answer. All right. Here we go. One of the things that I that we see so often when people in the diabetes community are talking about the fears of Coronavirus is you know, you have to have quote good Control to come out of this in good health, you know, and that we've seen that people, especially with type two diabetes, and all those comorbidities don't do well, but COVID-19 and I hit I always hate asking people I actually I don't I don't ever ask anybody in the show with their agency. And I'm not going to ask you, but are you a perfect diabetic?
Patric Ciervo 18:18 I'd say a B plus student. I'm definitely not perfect, but I overall I pretty well control.
Stacey Simms 18:27 I just think it's important to ask because, you know, I think there's a lot of fear that if you're a one c isn't 5.9 or 6.1, you know, consistently that that illnesses are just going to knock you down. And it's just not the case. Obviously, you want to be in good health, in quote, good control. So you know, share as much as you'd like. I think that's important to hear. I have seen a video or two of your Oh, yeah. You should say your comedian. Yeah. And you know, I've seen some of your blood sugars. They're not all the time.
Unknown Speaker 18:56 Right, right. Yeah. Which videos are you talking about?
Stacey Simms 19:00 Seek specifically there. I was thinking of the drinking game. Okay. Yeah.
Patric Ciervo 19:05 So yeah, just along with this episode. Oh, cool. Yeah, I that was a few years ago. So I kind of forget what was going on that I did that about three years after I was diagnosed three or four years. And my whole thing was FM pi, it's fine. But as long as I like, come down, I'm not gonna stress about it. Because in the beginning, my educator introduced me to one of her, like interns one day or, and she goes, like after I've been a diabetic for a year. And she says, This is Patrick. He used to call us every time he was about 200. And well, because I was told I wasn't supposed to be 200. So like the first like, year and a half, I was kind of like, going like crazy, making sure I could blood sugars. But once I realized I could be a little higher, and I'll be fine. Just as long as I came down. I was happy.
Stacey Simms 19:56 Yeah, definitely. I think we all handle this in a different way. You I have long decided that perfection is not an option.
Unknown Speaker 20:03 Yeah,
Stacey Simms 20:04 exactly. So I think it's just important to, to just kind of spotlight that a little bit and I appreciate you sharing that. I'm not gonna make you the spokesperson, I promise for people with diabetes who have been through something like this, but having gone through it, you know, what is your advice for other people with type one? You know, is there anything that you would tell people to to concern themselves with more or less?
Patric Ciervo 20:27 I mean, I kind of feel like basically, I didn't have that too hard at that experience, which is, in some ways I kind of feel bad because you know, I would like to say that like I fought all genders everything, like in spite but and I know everyone's experiences not gonna be like that. So I feel very fortunate, but like, I think a lot of the things like me recover quickly, was that the second I got to the hospital, I got there like when symptoms were early, and I've shot up with like fluids early. I think that's the number During my quarantine, I was drinking water, like non stop and take and taking vitamins. I was just doing everything I could to make sure even though I was feeling better that I wasn't going to let this slit, if you had to be in the hospital, I'd say definitely advocate like the hell of your diabetes management and how you go about it. I think for nurses who like work great, otherwise, they kind of have misinformation about what to do. Yeah,
Stacey Simms 21:29 I'm curious too. Did you bring a bunch of supplies with you? I've seen some people recommend, you know, take up to two weeks, you know, if supplies if diabetes supplies to the hospital if you have to go?
Patric Ciervo 21:40 Yeah, I mean, I'm on the on the pod so I grabbed all that I grabbed strips, and my my Omni pod and I grabbed pumps. I had my girlfriend put like juices and gummies in her purse, and then my parents did come up and everything from South Korea. They would go to my apartment and they bought more stuff when I need it.
Stacey Simms 22:04 It's so interesting because you were in the hospital before much of the lockdown or I shouldn't call you know, the the states that decided to self quarantine whatever we're calling it stay at home shelter in place. This would be for most of that went into place, wasn't it?
Patric Ciervo 22:20 Yeah, I mean, my first day in the hospital was the day Tom Hanks was diagnosed. So that's then. So that's basically my buck marker for how early it was you in Telmex? Yeah, same day.
Unknown Speaker 22:34 Uh huh.
Stacey Simms 22:35 You were diagnosed as a young adult. were you diagnosed correctly right away because I keep hearing more misdiagnoses at that age.
Patric Ciervo 22:41 I was diagnosed correctly. I really like my primary from South Jersey. I was in Ireland for a week, the week before. And I was drinking water non stop. I was in Ireland with my family. And my mom noticed two days later, we had a surprise birthday for At the surprise party all our friends are saying I look super skinny. So about two or three days later actually one day after her birthday, her actual birthday, she made me go to the doctor she talked to me and I told him my symptoms and he looked at me and he told us nurse to get the stuff to test me with instead tell my patients I'm going to be a while And so yeah, so my blood sugar was like 500 something and he made arrangements for me to go to the hospital and all that and gave me his personal cell phone if I need him at all during the night or something like that. And thankfully I didn't but yeah,
Stacey Simms 23:38 and you mentioned the the camp and then in the athletes that you've been involved with and you know, you believe I've done a lot of bike rides. Haha, did you find all of that because that makes such a big difference once you find that community?
Patric Ciervo 23:49 Yeah, that's definitely been like my lifesaver and everything prior to the diagnosis, went against into cycling, and I wasn't spiking like that much but Now my friends went to bike. So I was looking for a group to bike with. So in the hospital, I googled cycling and diabetes. And I found that jdrf ride to cure. And I contacted one of the coaches, who is also a type one. And the endo that runs this camp is his personal endo. So he gave me his information. And I think going there since
Stacey Simms 24:23 Oh, that's great. Yeah, going forward. Now, have you been instructed to do anything different? Are you just kind of back to full health? Do they monitor you? Do you diabetes wise or otherwise have to think about anything else?
Patric Ciervo 24:34 No, I did get a call from the health department and and Hoboken where I'm living now and in South Jersey, where I'm from, but other than just kind of initially checking in on me. I haven't heard anything. We get a call from my primary doctors nurse. I got a call from her a few times, just checking in, but since I recovered, no one seems to be concerned about me. I guess I Have a lot on their plate. But I've been self isolating. I've been doing everything. Basically everything everyone else has been doing washing hands. What? If I go out to walk the dog? I'll wear a mask and everything. You know, I don't know what's what. So just kind of be precautious in any area I can.
Stacey Simms 25:18 And I meant to ask when you were isolated for those 14 days. Did you live with your girlfriend? Did you live with anybody else or was that difficult for you guys?
Patric Ciervo 25:26 When my test result came back Saturday, she had already thought she had it. But she got tested then after my test result, and she came back positive. So we don't live together. But I have a roommate up in North Jersey, and my sister has a house to herself. She said she would go to Mar parents beach house for those two weeks and that I could use her house. So I was there for like a few days by myself. But once my girlfriend was diagnosed and everything, she has two roommates as well and she didn't want to be around them. They would still be isolated. together
Stacey Simms 26:00 in the hospital or otherwise they didn't treat you with anything did they? It doesn't sound like you were you know ascribed anything special?
Patric Ciervo 26:06 No they basically they did give me an A biotic when I left. And I think I don't even remember they were giving me lots of fluids and everything. Maybe they did give me some type of tail or something. I don't even remember what that was.
Stacey Simms 26:18 Yeah, yeah. But nothing on an ongoing basis.
Unknown Speaker 26:21 No, no. Well, Patrick,
Stacey Simms 26:23 I'm so glad you're okay. And thank you so much for sharing your story with us. Yes. Posted if you get the call to I don't know, donate plasma, or whatever the heck they're doing. Haha. You know, let us know what where you go from here, but I really appreciate you sharing your story.
Patric Ciervo 26:37 Yeah, thank you for having me in everything.
Unknown Speaker 26:45 You're listening to diabetes connections with Stacey Simms.
Stacey Simms 26:51 More information at diabetes connections.com. I will link up more information about generally speaking, you know COVID-19 type one diabetes and other interviews with people with type one who have been admitted, diagnosed officially with COVID-19 and have recovered and are speaking about it. So I will I'll post all that information. I will also put the guest Patrick's blood glucose drinking game video that we mentioned, that's in the Facebook group. And I will post it in the show notes as well just go to diabetes, connections comm and click on the episode homepage. Patrick and I talked off the air briefly about the new policy or the provisional approval from the FDA to have CGM used in hospitals. And that would be hospitals would actually give the people admitted a continuous glucose monitoring system. dexcom is involved. Abbott is giving the Libra array. So it's very, very new. In fact, it was after Patrick was released from the hospital. I believe that the FDA approved that provisionally but what I'm trying to figure out still and maybe by the time this airs, we'll have the answer to this. I'm trying to figure out if that is Only for people who come in without their own system, right? mostly people with type two diabetes, as we had talked about in the conversation with dexcom CEO Kevin Sayer, or if you come in with type one diabetes, and they're more willing to use your own system, or if they give you one if you don't have one, so there's still a lot to figure out there. But as you heard, he still had to do a lot of educating. And that, to me is so difficult when you're the person who has type one and who is in need of medical care. I mean, not everybody is going to be as able, as Patrick was to describe the situation and say, you know, I've got this. So man, um, you know, we've got to keep advocating, we've got to keep educating, time for Tell me something good, which is usually a good segment for that. But first diabetes Connections is brought to you by dexcom. We started with dexcom back in the olden days before share, and I always meet people who have no idea that there was a thing before share, right that there was a time when you couldn't look at your kids blood sugar on your phone. So trust me when I say using share and follow up really made a big difference. Benny and I have always set parameters about when I'm going to text him, you know how long I'm going to wait, that kind of stuff. And it really does help us talk and worry about diabetes less. If he's asleep over if he's away on a trip. It gives me so much peace of mind. It really helps me if I need to troubleshoot with him, because you can see what's been happening over the last 24 hours and not make a decision based in just one moment in time. The alerts and alarms that we set also help us from keeping the highs from getting too high, and help us jump on lows before there were a big issue. Internet connectivity is required to access separate dexcom follow up to learn more, go to diabetes, connections comm and click on the dexcom logo.
Tell me something good. Recently, we have shifted to talking about healthcare heroes and stories of people with type one diabetes who are in healthcare fields. And I'm going to talk about one in just a moment. But first, I want to share a great story about a gentleman who doesn't Have Type One Diabetes doesn't have diabetes at all. But he is very much a part of a diabetes community. You may know Mike mangus, because I've talked about him here on the show. And I've certainly talked about his products. Stay put medical is not a sponsor, but I love them. After all these years of trying different products. I think about two, maybe three years ago, we finally started using stay put, and this is gonna sound like a commercial, but it's unbelievable for Benny, everybody's skin is so different. So it can take a while to figure out what's right for you. Here's the example I give last summer stay put kept his decks calm on the entire week of diabetes camp. And then for three and a half days at the beach. Yeah, we restarted the sensor. So they were in the water every day at diabetes camp. They were sweaty, they were gross. And then we went to the beach and did ocean swimming and all the gross stuff in the sand. So that thing is unbelievable. But I'm supposed to be doing a commercial for state but sorry, just kind of setting it up. But Mike who heads up state but he was diagnosed with COVID-19 In early March, and he spent four days in the hospital, he is also fully recovered. And he's able to donate plasma in the hopes of helping others. Plasma donation for COVID-19. I mentioned at the very end of the interview with Patrick, it's newly regulated, it's experimental. So it isn't widely available or used yet. But Mike was right in the front saying I want to do this. He was knocking on doors as soon as he recovered. I will link up more of his story. He's got some coverage in the media, especially in Florida, where he lives. So I just think that's a great news story. And we'll follow Mike and kind of see how that goes and see what happens with plasma donations that could be really interesting, and hopefully helpful. I also want to tell you about Amy She is an RN. She's a mom to Marcus Marcus is 16. He was diagnosed in June of 2016. And he was 12 at that time, so Amy is a nurse at a rural health clinic in Oregon. And she says finding the balance between the demands of work she does have reduced it hours now, but even so, managing medical costs and keeping her and her loved one safe these days is a big challenge. She says I'm a quilter. So I've been making fabric masks for my co workers, high risk patients and acquaintances to keep myself busy. These are crazy difficult times. But I firmly believe this world would be a better place having made it through until then she says I'm taking T one D mom life by the horns, and one day at a time. Amy, thank you so much for sending that in all the best to you tell Marcus we said hi. And if you have a Tell me something good story, please go ahead and share it. You can shoot me an email Stacey at diabetes, connections calm. You can post it in the Facebook group. However you want to get it to me, you can message me on social media. I would love to tell your good news stories. And of course we post them on social media every week as well. Hey, can you hear that? Benny is playing video games. And the kids you can call them video games anymore, but you know what I mean, he's on his Xbox or whatever. He's screaming soul. Right now that if I didn't know better, I would think he was being, you know, physically attacked. And I've talked to my friends, this is very typical of teenage boys. Oh my god, they're so loud. So I'm gonna go yell at him when I'm done taping, I think it's gonna be all good. And maybe I'll go secretly record him some time. Just you can hear it. Oh my god. But hey, that's one of his big social outlets right now. You know, he gets in the headphones and plays with his friends and they're all together. So I'm not gonna complain too much. I'm gonna go in there and tell them to knock it off. The big threaten my house these days is you better behavior. I'm changing the Wi Fi code, you know, fate worse than death right now. And we're all on the systems all day long. I don't want to look at my time on my screen time, right or the time on your phone. They all have those features. Now you can tell how much you've been on the phone. Oh, my goodness.
Well, this is the part of the show where I generally talk about where I'm going. And I have been going a lot of places online recently. Yeah, I mean, it's all virtual. But I only bring that up because I want to tell tell you about a discount that I'm doing for the world's first diabetes mom right now. Yes, of course, if you're new, this is my book. It's available on Amazon. There's an audio book, you can get the Kindle version, of course ebook. So I'll put the link. It's always in the show notes. But I bring it up because I was talking to groups this week online, and I did a special discount code for them. And I want to pass it along to you. As I am taping this, I am scheduled to talk to jdrf in Michigan, and I'll be doing a world worth D parent meetup, which will probably already have happened by the time this episode comes out. But I've got a promo code not for Amazon, you have to go to diabetes connections.com and order the book through my website to get the discount. And it's very simple. The discount code is worst, just the word worst w o r s t. And that promo code will be good. Until next week, April 28. Again, that promo code is worst. I believe it saves you five bucks off the cover price. Unfortunately, you still have to pay for shipping. I know a lot of people go to Amazon because of that, but this will actually still be less than it costs on Amazon. promo code again is worst. And I can't wait to get back on the road, not just to sell books, although that's a lot of fun too, but you know, to meet people and do these presentations in person. There's so much fun to still do, but it's a little weird to talk to my computer and not talk to a crowd of people. I like the people a lot better. Well, thank you as always to my editor john McKenna's from editing solutions. Thank you for listening. I so appreciate you being here every week. What a time we're living through. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 35:48 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
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| 24 Aug 2021 | "It's Been Like a Dream Come True" Kyle R. Banks, Broadway Performer with T1D | 00:47:00 | |
Kyle Banks is a Broadway performer – singer, dancer, actor – he was diagnosed with type 1 while in a production of the Lion King and had to figure out – pretty much on his own – how to manage on stage. Kyle explains how he learned what he needed to do to perform at his best and shares stories about his time on stage with T1D. Now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it. Plus, some feedback about our last episode.. and a little bit about back to school. Visit our YouTube channel & subscribe! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27 This week, Kyle Banks is a Broadway performer, singer dancer actor who's diagnosed with type one while in a production of The Lion King and had to figure out pretty much zone how to manage on stage,
Kyle Banks 0:41 I would have to go into work with my glucose hovering around 33 50. And by either intermission or the end of the show, my glucose would crash and I would experience these crazy hypoglycemic episodes. And it was really scary for a while.
Stacey Simms 0:58 He's come a long way, Kyle explains how he learned what he needed to do to perform at his best. And now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it. Plus, I got some feedback from you about our last episode. I'll share that and a little bit about back to school. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. so much great feedback from our last episode where I interviewed my son Benny diagnosed before he was two now he's 16. And he went away for a month this summer to Israel without us with a non-diabetes camp program. So if you've listened, and you send me feedback, I really appreciate it. As I shared during that episode, I was nervous because we are far from perfect. There was funny bits too. I'll share a few of those after the interview. But guys, really, thank you so much. It is amazing to have that kind of support. I really appreciate you. I met Kyle banks at friends for life this summer lucky enough to travel to that in person conference, Kyle gave a welcome speech to new families that were there for the first time. And I knew I had to talk to him. But I heard from a bunch of families who came up to me later, instead of you that interview, Kyle, you know what a great voice. And boy does he have a great voice and what a terrific story. He was diagnosed with type one, nearly six years ago in November of 2015. And as you'll hear the story he was performing, he had made his career on Broadway. And if To me, it just seems like performing in that kind of venue on with that kind of energy you need to put in. It's like being a professional athlete. So I was very interested to talk to him. And I was really surprised, and you may be too as you listen, to hear how he started off with truly very little guidance. Of course, he has come a long way. And he shares how he did it, where he turned for advice, what he's using now. And he also talks about his foundation, and that is Kyler cares. We're going to talk about the benefit concert that helped that foundation from Broadway with love. It's called I'll link that up at Diabetes connections.com and you could watch really the incredible performances very entertaining. I am gonna play a clip of Kyle singing from that in just a moment and then we're gonna go right into the interview. But first Diabetes Connections is brought to you by Gvoke Hypopen, you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms they can be different for everybody. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk
(Kyle sings “Summer Time”)
Stacey Simms 5:04 Kyle, thank you so much for joining me. I'm really excited to talk to you. Your story is so unique. Thanks for coming on the show.
Kyle Banks 5:12 Thanks for having me. I'm excited to be a part of the show for sure.
Stacey Simms 5:15 That's great. We have so much to talk about. Let me just start if I could, at the beginning, your diagnosis story happened. While you were you were living your dream, right you were performing on on Broadway, you were touring, tell me about when you were diagnosed with diabetes.
Kyle Banks 5:32 Well, I was diagnosed in November of 2015. And I'm an actor, vocalist. And so I usually between like the Broadway cast and the touring company of The Lion King, and I was on tour at the time, and we were touring like Canada and California. And I just begin feeling having these crazy symptoms, like exhaustion and constant the need the urge to constantly urinate in, I would really scared me to death was the fact that I lost 30 pounds over the course of like three weeks. And so that was the trigger that made me go to the doctor to see what was going on with me. And that's when I was told that spective that I was diabetic based on my glucose test that that yet administered in the urgent care office, unfortunately, was on steroids at the time. So the physician that was treating me suspected that maybe steroid induced type two diabetes Oh, wow. So he prescribed, prescribed Metformin for me and told me, he suggested I go to the emergency room, but my response was, but have showed a knife so as possible, like what can we do to get through this. So I picked up my prescription and Metformin and went to the show to the theater, still feeling awful. And over the course of the next three weeks, of course, the Metformin did absolutely nothing to help with the symptoms that I was experiencing. And that landed me in the hospital for three days. And that's when I was properly diagnosed with Type One Diabetes. But still, up until being hospitalized, I was working and doing the show, which was looking back on it, which was really crazy, because it shows the intense at high intensity shows a lot of a lot of energy, most of which I did not have
Stacey Simms 7:40 let me just jump in. Because we're going to talk about performing on Broadway and what that does to your body in the energy you need. The Lion King, which we've been fortunate enough to see is nonstop What was it like during that time? Do you can you share I mean, I can't even imagine you must have slept all day, and just performed the best you could have been gone right back to bed.
Kyle Banks 8:01 Yeah, that was my life. Literally in bed all day, wow. Up until the time I would go to work, strike myself into the theater. And usually we're running around during the entire show, just acting. Crazy. You know, the cast is so much the show so much fun to be a part of being in the cast. And then the Quraan camaraderie backstage during the show, the energy is always high and festive. And so of course that's participated in none of that when I wasn't on stage, I was like in my dressing room trying to just replenish any amount of strength that I could or sitting in my station where we get stressed. While the show was happening, it was definitely a huge struggle pushing through just that time. Even after my diagnosis, it took a while for my energy to return. Because my glucose levels was so all over the place. When I was diagnosed one of the crate I you shared with me a bit about your son's experience and the fact that he had amazing doctors that he had access to the same thing with me. But you know, my doctors were not able to tell me once they prescribed insulin for me and showed me how to incorporate that into like the management of diabetes, that they did not share with me the struggles that I would have taken insulin and being so active. That was something that I had to figure out on my own. So
Stacey Simms 9:36 to give you a prescription for insulin, I assume they put you on shots and send you back out to perform it sounds like with very little instruction of, you know, exercise is going to bring you down and eating is going to kind of level you out or I don't even know. So when you got back to your first weeks or months of performances. Do you mind sharing a little of the trial and error I can't imagine as you've already said it, it wasn't a smooth transition back.
Kyle Banks 10:03 Oh, God, no, you know, it's crazy because I actually went to New Orleans to travel to New Orleans to visit my mom's doctor. And she told me to go to the emergency room. And that's when I was hospitalized for three days. So then once I was released, I flew to Denver where the show and jumped right back into the show with now my new regimen for diabetes management, which included finger pricks, which I would do like sometimes 12 or 12 finger prints during the show. And this insulin regimen, that immediately after the first show, I remember my glucose crashed to like the low 20s. And this became a pretty consistent situation where I would have to go into work with my glucose hovering around 303 50. by either intermission or the end of the show, my glucose would crash and I would experienced these crazy hypoglycemic episodes. And it was really scary for a while and this went on for months. And I knew that I just could not continue in this route, because I was reading that, you know, the fluctuations really dangerous, and not only could you know, pass out and have a seizure, if one's glucose goes too low, but you know, could also bring about complications as well. So I knew I had to figure out a better system for my lifestyle, and this new diagnosis that I was now living with. So after about nine months after, actually a full year after my diagnosis, the show just happened to travel to New Orleans. And we were there for a month at the end that I decided to take some time off from work to figure out how to better care for myself and to figure out if I would even be able to continue on performing at this level, and just really figure out a plan for my career.
Stacey Simms 12:05 Well, we know how the story ends that you are still performing and you can. So what made the difference? How did you figure it out?
Right back to Kyle answering that question. But first, Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us that really annoys me and Benny, it isn't actually the big picture stuff. It's all those little tasks that add up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management? Would visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers number wondering about how you're doing with your blood sugar levels, find out more, go to my dario.com forward slash diabetes dash connections. Now back to Kyle talking about how he figured out how to thrive on stage and avoid those huge lows.
Kyle Banks 13:09 Just having that time to the Lion King can be all consuming when you're doing the show between rehearsals and the actual show and the adrenaline that comes in being getting prepared for it. And once once the curtain comes down, so it doesn't really leave much time for other activities. But having the time off, I was able to just really do a lot of research digging online and social media. I discovered beyond type one and children with diabetes. And since a lot of various resources that could different podcasts, such as you or I listened to a lot of shows which people just talking about how they care for themselves. And this is such a varied cast of people talking about their experiences, athletes, teachers and a varied cast. So I was able to really just dig in and hear what other people were doing and take certain things that I could apply to to my situation and really helped me by when I went back to work. I now have a plan of action, I could test it out and discovered that it actually worked. I could go into work with my glucose hovering around 120. I make sure I had lots of snacks with me and a small meal that I would eat without insulin during intermission, and then another small meal after the show without insulin. And I was so shocked that I was able to I didn't experience the crashes anymore, and I'm able to just maintain my level of activity in a safe way and I'm just so thrilled that this information was available to me. I just had to go a little digging to find it.
Stacey Simms 15:03 So yeah, I mean, it sounds like if I'm hearing you correctly, that you went outside the traditional medical sphere, right, it sounds like you got all of your information from the community,
Kyle Banks 15:14 pretty much, pretty much, I knew that my situation is very different than the other patients that my physicians were treating. Initially, I thought, well, the way Kyla cares came about was, when I was in New Orleans, with the time off from work, I reached out also reached out to children's hospital because I figured that would be a great route to find out how they were basically, you know, in the theater with basically big kids running around, running around the theater. So I figured that it would be a lot of insight that maybe the kids or the kids would be able to give me as it relates to how they manage. And so I connected with Children's Hospital is already connected with them, because we do a lot of outreach through Disney. And with Shriners Hospital Children's Hospital, so it's rather easy to connect with them. And that's when I discovered that the kids were having horrific outcomes as well as it relates to glucose management. And I was really moved by the fact that the endocrinology team, stressing to me just the effects that this disease is having on communities of color, specifically kids of color, and how they were having different outcomes in their Caucasian patients. It really struck me and months after that initial meeting, I was just harping on the information that I was given. And that's how eventually, that's how coworkers came to be as a result of that meeting at Children's Hospital with the endocrinology team,
Stacey Simms 16:50 we're going to talk about Kyle cares. And we're going to come back to these disparities that are just, they're heartbreaking, and they are real, just to finish kind of on your experience, you're able to go back and perform. And as you said, you you kind of bounce on, if that's the right word, you kind of go back and forth between the Broadway cast the touring cast. I know, everything's messed up now because of COVID. But from from the time you went back, were you able to go back to the roles that you had been performing and loving before your diagnosis?
Kyle Banks 17:22 Yeah, I was, I'm just so happy to have been able to figure out how to do that safely. Because I did it for so many months. Luckily, without any horrific events happening, like me passing out on stage, or even behind the stage, for that matter, I was able to make it through that very scary time period, without any of that happening. And I'm very lucky to have that had a seizure with my glucose being so low so often. But yeah, I was able to figure out how to do it and how to continue doing all of the things that I love. And like I said it was the community making the information that so many people are just so eager to share online that really helped me push through
Stacey Simms 18:11 what technology Do you use now?
Kyle Banks 18:15 You Economy pod influence, and the Dexcom ci six, continuous glucose monitor?
Stacey Simms 18:22 Are you able to I think I know the answer to this, but are you able to kind of hide that stuff under your costumes? Or is it shown I'm curious what that looks like.
Kyle Banks 18:32 Um, you know, the wardrobe department at lion kings so supportive in just just extremely loving and nurturing through this whole period gluinos first outfit with my Omni pod, I was so concerned that it will cause problems for wardrobe. And when I brought it in and sold it to them on my own. It's like, Oh, that's no problem. So they made me flesh tone bands for my arm and for my abdomen that I could wear deserve scenes in the show where we repair on top. And it was pretty simple fix. Wow, that's great. Yeah, I think they made my slipcovers in like two minutes, like maybe like five minutes before the first show when I was wearing the really simple thing. That's cool. All right,
Stacey Simms 19:20 let's talk about Kyle cares. I am going to come back and ask you a lot of Broadway questions later. But let's talk about hierarchies. Right now. This is your nonprofit. As you mentioned, this provides grants you do a lot of work to get technology for children for young adults with type one. And I've done a little bit of reporting over the years, frankly, not as much as maybe we all need to be thinking about but some reporting on the racial and ethnic disparities, because it's really incredible when you dig into it. When you look at use of insulin pump technology. It's something where, you know, 1/5 of black children compared to white children use comes from my understanding of how Craig if I'm wrong, it's not only Because of income or education or insurance, you know, it's a question of, I don't know, you tell me I shouldn't be talking to you about this. Tell me what you have found out, what should we be thinking about?
Kyle Banks 20:11 Yeah, you know, that's that was my thought as well, when I, when we first began, like digging into Kyla cares and figuring out, you know how we wanted to help. providing grants that can go towards the technology would be the most beneficial route. And we soon discovered that, you know, the complicated the situation is, is much more complicated the financial barriers that keep people from accessing the technology, especially with kids, the stigma surrounding diabetes, specifically type 1 diabetes is really high. And a lot of kids, even the ones that have insurance and have their parents have the financial means to access to technologies, they still don't want to wear them because they don't want to feel different than their peers or don't want the attention that wearing these medical devices on their bodies brings into their lives, we've discovered that a lot of what is needed is one diabetes education, just making sure that families of color have like the basic information needed to care for themselves for a loved one living with the disease. You know, things like, you know, reinforcing the latest glucose management practices and why CG ins and pumps are beneficial and know ways to avoid hyperglycemia and hypoglycemia, pre bolusing movement like walking after meals and using incorporating more water into one's daily water intake as a way to flush excess glucose out simple things like this, we're finding that many parents and people living with the disease aren't aware of them, especially those that have been living with the disease for an extended period of time. It's sort of like they spaced out all of the latest information as it relates to care or management of this disease. So yeah, there's there's a lot of confidence building that needs to happen. Because we live in communities of color.
Stacey Simms 22:21 Do you think that and listen, I don't mean to put you on the spot, I know that you are not in you know, you're not an endocrinologist, you are not a perhaps an anthropologist, you know, as I said, these questions. But, you know, I think it's so important that we could try to talk about these things openly. And I wonder if, as you talk about better education for the patients and trying to get these kids and their families to, you know, be more accepting or look at different, you know, technology, not worry about fitting in. What about the endocrinologists themselves? Do you think that there is a problem or a situation here where, without meaning to even right, I mean, I'm not quite sure how to phrase this, Kyle. But I guess what I'm asking is, do you think they treat patients of color differently? They don't say, Hey, here's a CGM, or here's a pump, or here's, are you finding that sometimes the endos are not trusting their patients, I'm not even sure how to phrase it, but they're not, they're not giving them the opportunities to use the technology.
Kyle Banks 23:18 This is indeed true. I'm discovering that a lot of patients living with type one, especially people of color, are not even being offered the latest technology or technology in general, to help them with, with management. And I mean, there's so many things that goes into that there's a shortage of endocrinologist, so it's really hard to get an appointment, a lot of these endocrinologist worked. The cultural differences that many endocrinologist face when dealing with patients can be intense. In those moments, we only have 30 minutes or hours with someone to try and figure out why they're having so many problems, and just not being able to relate to the human being that's sitting in front of you and their lived experiences. It does create these situations that eventually lead to horrible outcomes for the patient. So and I'm not saying that, you know, all endocrinologists are approaching these situations with ill intent. I just think it's just the way things are set up right now or the way the way the system is set up. It's not serving the patients, especially specifically patients of color, well, those issues are, do exist and we need more endocrinologist of color, or more doctors to go into endocrinology into the field. And we need need some culturally sensitive training before in the cringe for occasion and in the prints that are treating people of color as well.
Stacey Simms 24:58 While these are tough issues. To talk about you made an interesting point earlier about the way you found the care that has helped you through the most, and that was through the community. And I think that that's a story that I've heard over and over and over again, by people who belong to all different types of racial, ethnic, socio economic, you know, different groups. We come when I've done this, I've said, Hey, I have something I want to try, I bring it to our endocrinologist. And he says, oh, great idea. Sure. He didn't suggest it, it doesn't mean that he's holding back something or trying to keep it from me. He just was, you know, for whatever reason, we have a fabulous endo, you know, that wasn't something that was on his radar. And I wonder, too, just in the last couple of years, we finally had these discussions about getting more people of color at conferences represented in the community, you know, jdrf, beyond type one, friends for life, as you mentioned, children with diabetes, you went to the children with diabetes friends for life conference in July, we met for about three seconds. So thanks for for that I really ran up. Kyle as he was trying to start speaking and I was like, you have to come on the show. It's great to meet you. But just being there, I always say we were so lucky, because I saw people in the community that looked just like my son. And my family, from the very beginning didn't even occur to me that we weren't presented a long way of saying, Kyle, going to friends for life this summer, I've got to assume that you met some families of color, that you felt that you were there to have these kinds of conversations, not just for that, I mean, you have so many great stories to tell. But let's start there. What was that like for you this summer,
Kyle Banks 26:31 it was an amazing experience. And children with diabetes is actually one of the organizations that were Kyla cares is partnered with, to expose more families of color to that experience. And we actually brought a few families from New Orleans to friends who live with me as well. So it was really great to see the process of opening up to being more engaged with management happened in real time. Like the kids that came with me, I watched them a little bit apprehensive at first going into like this very white space. And not knowing what was going to happen or what the experience would be like or, or even I tried my best to just explain the benefits of being there. But I think it's something that you have to experience firsthand to really get the gist of what it's about. So it was great to see the kids just open up and make other friends. Because many of these kids, they don't know any, they're the only person they know living with type 1 diabetes. So to see them make up a friends that living with type 1 diabetes or at dinner, you know, to hear them discuss, you know, pre bolusing. And you know how many carbs are in their meal and just for them to be able to have those companies have stations in this setting freely and not feel judged or not feel different. And by the end of it, you know, they're exchanging numbers they've made friends know, they're definitely more engaged in their care, checked in on a few of them. And they're just a lot more excited about being healthy and doing the things that they've learned that the takeaways from the conference, and I was excited to see them incorporating some of those lessons into their own self care. So because lets me know that no, this can work if we expose the kids, specifically kids of color if we expose them to these types of experiences that can have a positive effect in their lives and in their care.
Stacey Simms 28:42 Can I ask some Broadway type questions? Oh, cool. All right. Okay. Love it. Alright, so we were fortunate enough to see the Lion King on Broadway. And you know, what an exceptional show. I think most people are familiar with the incredible costumes, the staging, the dancing. I mean, it's just an incredible show. Tell us a little bit. You've played so many different parts in that as I'm looking through your biography, right? What have you played in that show?
Kyle Banks 29:06 Oh, my God, I played. I'm in the ensemble, or a lion king, but I've also understudied and fossa. And just being in the cast of liking has been just an amazing experience. It's been like a dream come true. And it's also it's one of it was one of my favorite cartoons outdoors, or Animated Movies of the child. So to be a part of the cast. It's just been a dream and being on Broadway and touring the country. I mean, I've been able to see. I mean, there aren't many cities that I haven't been to Wow. And Lion King is such a popular show that when we traveled to the city, we get to sit for three and four weeks at a time. So really get to golf ourselves in the communities in which we visit and that's actually been the best Part.
Stacey Simms 30:00 What's it like when you as the cast members come down the aisle, because that is a breathtaking moment for the audience. And we're looking at these incredible costumes and the carrot they never break character roll. Ooh, and on, there's got to be little kids backing you. Like what is that, like for you all
Kyle Banks 30:18 the excitement in the faces of people. I mean, the kids are one thing, but as the adults are adjusted to experience the show, I mean, I've had chrome men come to me to come up to me after the show with tears. And now it's just talking about how move they were by what they experienced on the from the stage. And it's really cool to be part of a show that is so engrained in, in our culture and so loved. So meaning it means so much to so many people. It's just been amazing experience being connected to the show,
Stacey Simms 30:55 unfortunately, I'm gonna guess you haven't performed in a while, what's the latest with COVID and performances?
Kyle Banks 31:01 Well, Lion King is opening on Broadway, September 14, and then the tour in October. But we made the decision that transitioning into like this, some of them new ventures in my life, one of which is Kyla cares, now over the pandemic. And having time off really allowed me to just dig into the work we're doing here at COVID cares in the partnerships that we've been able to establish with other organizations. And this work is so meaningful to me. Because I know personally, just the difficulties living with type 1 diabetes, but also, I personally experienced the triumphs of figuring out how to care for myself and still be a part of the things that bring me joy, and how to do that safely. want other kids who I want kids to know specifically that, you know, they can still do all of the things that they want to do in life and really just give them the tools they need to, to lead a healthy life and to be normal kids, you know, and for the adults that are that are living with this disease to know that know, if you engage in your care, things will begin to turn around. And it doesn't have to be this horrific experience where it's just a steady decline in health, you can still lead a healthy life with type 1 diabetes.
Stacey Simms 32:37 Kyle, before we wrap it up here, I know your funds for like an A die. Let me just throw a few rapid fire questions. Sorry, okay. All right. Has your Omni pod ever gone off on stage? Like, have you ever had an alarm or Dexcom alarm during a performance?
Kyle Banks 32:56 Oh, my God. Yeah. I mean, I, I've had my podcast on stage. So like standing there, and it's going off? And and I mean, what can I do? I try to do my best to try to avoid those moments. But I'm even one time is a funny Omnipod story, my Omni pod, expire it in my PBM was in my dressing room, so I didn't have time to run to get it. So I took the Omni pod off when it's still blaring and just put it in the trash, which was near the stage. But you know, far enough where it could be heard from the stage? Well, after about two scenes, I come off stage and I see all of this commotion stage managers and security for the theater of him around this trashcan trying to find out what's this loud, glaring noise? And is it dangerous? Like do we need to stop the show? And I'm like, No, I'm so sorry. But it's my part. I explained it all. And it turned into a funny moment. But it was not. It did security was not induced.
Stacey Simms 34:11 That's funny. Oh my goodness. Yeah, that can happen. For sure. I'm sure people are gonna ask me to ask you just you know, you've talked about how you kind of learned to figure your blood sugar to figure out your eating and you figured out, you've been able to figure out what works for you on stage. And I'm curious if you had any advice for kids who are doing school plays or adults who are performers?
Kyle Banks 34:33 Well, they, you know, the thing that really helped me out, honestly, was really learning how to incorporate the technology into my care, and leaning heavily on my CGM, and all of the information that it was delivering to me and which allowed me in turn to respond to what my glucose was doing or any fluctuations that I was having. you're experiencing, it really just helped me to not not having to finger prick and wait for that information, which is limited because it doesn't let you know doesn't inform you if your glucose is rising or falling. So just having that information just made a world of difference, and allow me to really just care for myself when I was performing. And it also allowed me to focus on what I was doing, as opposed to just being so concerned with my glucose.
Stacey Simms 35:31 Before let you go, how can we help Kyler cares? What do you need from us?
Kyle Banks 35:36 Unfortunately, because of COVID, a, we've had a really difficult time with fundraising, all of the fun ways in which we would go about raising funds have sort of been snatched from us, we did a fundraiser called from Broadway with where I incorporated a concert of love songs performed by artists that are currently on Broadway, from shows like Book of Mormon and Hamilton Lion King, of course. So during the shutdown, we produced that and presented it virtually, we were going to present the live version of that in New Orleans at the singer theatre, which is a theater that houses most of the Broadway shows that visit the city. But unfortunately, New Orleans is like one of the hotspots for this fourth, this fourth way the pandemic, so a children's hospital and other health care facilities that were parking within the cities. And neither did we felt comfortable with a live gathering of 2800 people with all that's going on. So, um, we're just trying to figure out, you know, the best ways to raise funds and how to continue connecting with our community, because it COVID is making it really difficult to gather. And it's something that that's something that's really important, as it relates to sharing this information with one another, helping with donations would be great. Also just more people of color, just sharing their stories as well. We find that the more visible we are, the more people can see themselves, the more it helps with feeling that you're part of and helps with confidence building and the reduction of stigmas and just knowing that you're not alone, so it's a two ways people can really help.
Stacey Simms 37:39 Well, Kyle, thank you so much for coming on for sharing your story. I hope this the break, I'm gonna call it from performing isn't the end of your performing. So
Kyle Banks 37:55 not at all. Well keep us posted. I most definitely will. I'll let you know. And I'm looking forward to you know, again, producing one of the things you know, feeding my artistic muscle is really excited about producing the shows from Broadway with love. And I hope I can get back to that because the first one was a lot of fun. So if people haven't seen it, you can go to our YouTube channel and check it out. But yeah, I want to get back into that when things when COVID allows us to do so. Excellent. We look forward to it.
Stacey Simms 38:30 Thanks so much for joining me.
Announcer 38:36 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:42 A lot more information on Kyle on Kyler cares. You can find it all at Diabetes connections.com. At the episode homepage, there's a transcription there as well as there is for every episode, I was so excited to talk to Kyle. Some of you may know I'm just such a real Broadway fan. I love musicals. I highly recommend Schmigadoon on Apple TV, if you haven't watched that yet. It's very entertaining and fun. I had actually talked about starting a Broadway type podcast during COVID. I still may do that I have in the back of my head how I want to do it, but it's gonna be so much work the way I want to do it. So we'll see maybe next year. I don't know. I'll keep that in my back pocket for a while. A lright, Big thanks to Kyle for coming on. And coming up. I'm going to talk a little bit about back to school what it looks like in my house this year. And also some feedback about our last episode. Benn's big trip to Israel, but first Diabetes Connections is brought to you by Dexcom. And you know, I do get a lot of questions about Dexcom coverage for people on Medicare. And why not? It's not like you stop needing a CGM, the minute you turn 65 The good news is that the Dexcom g six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have type one or type two diabetes and intensively managed Insulin, you may be covered. To find out more about what that means. And if you qualify, go to Dexcom.com/G6-Medicare, I will link that up this episode, don't worry about writing it down, you're gonna want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more. Here's the link but it's over at the homepage dexcom.com.com/G6-Medicare.
Alright, I was very worried, as you know about the episode with Benny, because as you heard if you heard, he was far from perfect when he went by himself to Israel, which I didn't expect it and expected to be perfect. But you know, I see a lot of parents who post on Facebook and want their kids to stay under six for their agencies and never go above 130 on the Dexcom. And you know, we don't live like that at all. I wanted Benny to be honest and open and boy was he ever. It was interesting to hear him talk about what it was like and talk about diabetes camp and you know, gosh, I'm so thankful knock on wood wherever I can knock here, you know, he's a confident happy kid. He's got strong opinions, and I really feel like he's gonna be okay, right after a trip like that. So the feedback I got was just fun. A lot of people reached out with their own stories. Corinna wrote, thank you so much to both of you for sharing this experience. It's so valuable to see how a parent can continue to support their son or daughter in an age appropriate manner. Lee wrote, I love that he's so transparent and genuine. I'm betting on Benny, several emails and direct messages saying thank you for being honest, it's really nice to know that we don't have to be perfect balancing independence and could quote diabetes, health and numbers can be difficult. A lot of acknowledgment about that. But my favorite came from Joan, who emailed me and said, This reminded me of my 16 year old adventure on a cross country bus tour. We were still using urine testing. This is 1974. No CGM is no pumps, no cell phones or texting. I have a similar well adjusted attitude as your son which has served me well through my 50 plus years. With T1D. What I learned from this podcast was what a challenge it must have been for my parents, I have traveled the world had my share of health issues, enjoyed my life. And I'm not eating celery crying in the corner. Thanks for sharing this story. Joan, thank you for sharing that email. And the funniest thing about it, I read it to Benny, he did not know what your urine testing was, he had no idea that finger sticks weren't a thing at some point in in pretty recent history. 1974. So you know, I got to talk to him and explain it's so funny. And he was diagnosed so little. And he's not a diabetes podcast or a researcher. And I see what he doesn't know. It's so interesting. So Joan, thank you so much for that. If I get any interesting stories or funny emails, I'll definitely share them as we go forward. But I want to just quickly bring up back to school, which is still looking so difficult in so many places across the country. And I wish you all well, especially those of you with younger children. Oh my goodness. So I've got to going back to school, my daughter is a junior in college, she is back. And my husband drove with her all the way to New Orleans or she goes to school because she's got a car this year. Thanks for giving me something else to worry about. Yay. But she's doing great. And Benny is a junior in high school, and he's driving to school, our school will start the day after this episode goes live. We're in the south. So they go to school before Labor Day growing up. I always went back to school right after Labor Day, but he's driving to school this year. I don't know when I'm going to see him. He's so busy. And right now, his school does have a mask order with a very large public school system in North Carolina. And he's vaccinated. I assume that we'll get the booster shots as they roll those out. But it's going to be interesting to me. I mean, he goes to an enormous High School. It is I want to say there are 650 kids in his class in his grade. So it's a very big school. It's a crowded school. So we'll see how this works out. He expects to be back virtually in school very soon. I don't know. But I will share that I realized just today. I have to get all his diabetes stuff back and bring it to the nurse. And I know you're thinking well, Stacy, you've done this every year since he was in preschool. How could you forget? We know with COVID we haven't even been in the school. I went back. I don't even know when last year a couple months ago could have been last week. I have no sense of time anymore. I went back and got all the stuff that we left there from 2019 2019 2020 that school year, and I haven't been back to see the nurse since so we're getting the school form signed. I got to put his stuff together and make a new kit. I um, so we'll be doing that. And then you know, he's you know, Benny, he's super casual. He'll take his backpack everywhere. So he'll have supplies, but I like to have stuff at the nurse's office for him. As well, and hopefully it's the same nurse, because man, she was great. And she totally got that he's super casual and just wants her to be there when he needs her and doesn't need her checking on him. And, you know, really terrific person. There are, at least at the time when he was a freshman, there were 21 kids at that school was type one. And I'm going to assume there are more, because I don't know about your town. But we're having more and more cases here. And it's not anecdotally I just talked to the end of the other day, and he said they have many more. And we'll we'll talk about that in a future episode. You know, many people think COVID is sparking more cases of all types of diabetes. Before I let you go, take a moment to check out our YouTube channel. We are getting a lot of engagement there. I've got the in the news episodes over there. So if you don't know that we have a YouTube channel, it's just Diabetes Connections on YouTube. And all the episodes are there. If you prefer to listen to podcasts on YouTube, which many do they're most of them are not video podcasts. It's just audio, but a lot of people like that platform. Also the newscasts, though, are video so if you want to see me play an anchor lady, you can head on over there and I'll link that up in the episode as well please subscribe if you head over there you know very simple just click Subscribe on the on the YouTube channel. Thank you as always to my editor John Buckenas from audio editing solutions. Thank you so much as you listen next week, we are likely going to air the Afrezza interview that I did over the summer. Still working on a few things but it looks like that one is going to come through for next week very excited to get an update from them. They've been around for a while. But man are they making a push ahead as they have more studies, more studies with children coming up and lots of interesting stuff, Afrezza and of course the newscast Wednesdays at 430 Eastern Time live on Facebook. I'm Stacey Simms. I'll see you back here in just a couple of days until then be kind to yourself. Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 13 Apr 2021 | Going to "Regular" Sleepaway Camp with Type 1 Diabetes | 01:02:57 | |
Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription (beta) Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom G6 CGM system.
Announcer 0:23 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:29 This week, let's talk about summer camp specifically non diabetes. sleepaway camp, we have a great round table to tackle a subject that can seem pretty scary, but it's honestly one of the best things I've ever done for my son. And my guests who went themselves agree.
April Blackwell 0:46 It sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me.
Stacey Simms 1:02 That is April Blackwell, an adult who lives with type one talking about her summer camp experience. You'll also hear from Shelby Hughes. She lives with type one and sent her daughter with T1D to diabetes camp and regular camp. Plus, you'll hear from me, I've sent Benny to month long, regular sleepaway camp for many years. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am always excited to have you here. But I this is one of my favorite topics. I love talking about camp. I think camp is so important for kids and for parents. If you're a longtime listener, you know that if you're new, Hi, I'm your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. So what's the big deal about camp, I really feel that going away from your parents, even if it's just for a couple of nights. And usually it's for at least a week, that's what we're going to focus on here is week long or longer camp programs, gives kids a gift, a gift of independence of confidence, a little bit of responsibility, diabetes or not. You learn who you are, when you're not with your home friends, your school friends and your family. You can try different things you can you know, invent different personalities, you can give yourself a nickname, I went to camp with a kid who had a completely different name at camp. And it's a huge tradition in my family, I went to the same summer camp for a little while as my dad, if that gives you any indication, my kids didn't go there. Because we we moved that was a northeast thing. And my kids are both gone to camp, of course in the southeast where we live. But I'm such a proponent of camp. And the flip side of that is, it's so great for the parents, because you have to know who you are when your kids aren't around. I know that seems weird, especially for diabetes moms and some dads. But we get so caught up in our kids, that when you are able to turn the Dexcom share off for a week or longer. It's liberating in a way that I think is incredibly valuable. Is it scary? Oh yeah, I worry every day, especially when he's not at diabetes camp. So we'll get to it. I do want to bring up a couple of quick points. Before we get started. I'm going to try to get a blog post out about this this week. Sometime. I'm a little behind on things. But I'm hoping to put that out because we cover a lot of issues in this Roundtable. But one thing we didn't really mention is the question of when is my kid ready to go to regular camp. This varies kid to kid various camp to camp. I think that if your child is able to check his or her own blood sugar, you know, with a meter not just looking at a CGM, because cgms can fail. And they do need to know how to check their blood sugar. If your child can administer insulin with his or her pump, if your child can change a pump, inset, and do all these things with supervision, I don't expect you know, eight 9, 10 year olds, 11 12, 13 year olds even depending on the kid to be able to do all these things perfectly. If they can do all that with some supervision, then I think you're at a good starting point. And the other question is of the camp itself. Are they willing to learn? Do you feel comfortable with the staff their medical or not, and their knowledge? You know, if you're sending a 14 year old to scout camp, you might feel comfortable that the scout leader knows how to administer glucagon and could call 911. If you're sending an eight year old, you may want to have a camp with more medical knowledge so they can recognize highs and lows and help with giving shots if needed. You know, that kind of thing. It all depends on many, many different factors. But these are important questions to ask yourself. We're going to go through with a round table I'm going to come back after with a couple of things that I think we missed that I want to make sure to mention. But first Diabetes Connections is brought to you by Gvoke Hypopen and you know that low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. g evoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.
My guests this week love camp just as much as I do. Shelby Hughes lives with type one herself. Her daughter Caroline was diagnosed at age seven. She is now 11. She's the youngest of Shelby's three children. And Caroline went to diabetes camp and a regular camp and you will hear all about that. April Blackwell joins me as well. She lives with type 1 diabetes. She was diagnosed as a kid and she went to space camp and was then a counselor at Space Camp. Now you probably recognize April's name. We've talked to her before. And, gosh, I'm always all starstruck talking to her. She works at NASA. She has her dream job she says of flying the International Space Station for mission control. So she was kind enough, right that she was kind enough to come on and talk to me about camp this week, which was just absolutely amazing. So April, thank you so much for that. But I think her perspective is really valuable. And I hope you enjoy this whole conversation. So I am really pleased to welcome Shelby Hughes and April plaque. Well, we are going to talk about camp. Ladies, thank you so much for being here.
Shelby Huges 6:51 Thank you for having us.
Stacey Simms 6:53 I think we are all in agreement here that camp is cool camp is, great campus really good for kids. And for parents. So she'll be telling me about your, you know, when you decided to send your child to camp, how old she was, what kind of Camp it was, how long.
Shelby Hughes 7:08 So the first year that Caroline went to camp was before she was diagnosed diabetes. And I know it seems early, but the camp where my older two children had gone was you know, not a lengthy stay camp is about five nights, six days, and it was a church camp. But it was within, you know, reasonable driving distance from our house. And they offered a starter camp, the year that Caroline finished first grade. And it was a maybe a four night five day situation. So we sent her to that. And she had such a great experience. And so that just was on our radar like she was I just feel like camp is super important for all kids. So you know, we wanted to get her started as early as possible.
Stacey Simms 8:02 When she was then diagnosed with type one, did you hesitate sending her back.
Shelby Hughes 8:06 Now, um, I think she she was diagnosed in the middle of her second grade year. And the only hesitation was I was worried that the camp wouldn't accommodate her and would say no, she can't come we can't deal with that. So that was our only issue. And when we got in touch with the camp director, and she said no problem. You know, we'll we'll work it out. We were We were all ready to go.
Stacey Simms 8:33 Wow, that's great. All right, and we'll get into the details of what we had to we all have to do for those accommodations. And for us as parents to be able to just be able to sleep through the night ourselves when our kids are at camp. April. Tell me a little bit about your camp experience. How old were you when you went to camp? And did you have type one at the time already?
April Blackwell 8:54 Yeah, so I I have always with my nerdy persona, but I did go one summer I did a back to back space camp in California when that was still open. And the next week I went to diabetes, to very like different, you know, scenarios for a person with diabetes. And this was only about a year or so after my diagnosis. So I was still doing injections. I didn't have any basically no technology at all back in the dark ages. So I think in some ways that helps maybe because my parents weren't used to getting, you know, share data all day long. And so it sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me to take my diabetes. He's on myself.
Stacey Simms 10:01 And I'm sorry, did you say how old you were when you went to that camp?
April Blackwell 10:04 I think I was like around 12 or 13.
Stacey Simms 10:07 Okay. Did you go back to diabetes camp? Did you go back to regular camp?
April Blackwell 10:13 I, I never went back to those two camps. Actually, I did some other like church camps and stuff. But my summers just seem to get really busy. So it was hard to fit in those other camps.
Stacey Simms 10:25 Yeah, that's the tough age. When she gets to be about 14. I think there's so much going on. Right? It's hard. And our camp experience, which I've shared before is that my daughter, like you, Shelby, my daughter went to this camp, my older child is three years older than Benny, and had a great time and would come home every summer and say, I can't wait for you to go. And I'd be like, there's no way he's going. And we were very fortunate, in my opinion, because it helped me, I don't know about Benny, but he was going to diabetes camp. And he was able to go when he was seven. So he went for a week to diabetes camp. And then the next summer, he went to diabetes camp for a week, and then his regular camp for two weeks. And I say we were lucky because it got me used to the idea of him being away understanding what needed to be done, even. And we'll get into this later, even adjusting basil rates for activity and things like that. But he went for two weeks when he was eight. We did not have share yet because it wasn't even around. And he just had his deck. No Did you have a Dexcom that first year he did not have a Dexcom that first year it was fingerstick only. And then the next year he had share he had Dexcom no share. And that next year at age nine, he went for a month and he has gone for a month every year since except for COVID. And this year, the camp is going to Israel for a month. That's the age group where they go to Israel. So we are dealing with a totally different in my opinion environment. To him, it's the same thing. But that's a different episode. So that's our summer camp experience. And it has been it has not been perfect Far from it. But it has been I think one of the seminal experiences of his childhood, and is certainly influenced him in a great way and given him a lot of confidence and independence. given me a lot of sleepless nights. Alright, Shelby, let me start with you, when your daughter was was going back to camp she was they were familiar with her, they knew what were some things that you talked to them about, to kind of get things, you know, set her up for success. Was there anything that you did at the time or learned since that made it a little easier for her and for the staff.
Shelby Hughes 12:28 So um, one of the things, they did have a full time nurse, which was great. And the nurse was very willing to be trained on all things pump related and CGM related. And she at the time had the Medtronic 670 g, which automatically adjusts her basil rate, as long as she's an auto mode. So I figured that would make things a little easier than people wouldn't have to be fooling with our pump, adjusting rates and whatnot. And also, I got, the director got me in touch with the cafeteria staff with the head of the dining hall. And she was fantastic. She sent me a list of everything that they were going to be serving every meal for the entire time. So that gave me the opportunity to, you know, give them some carb counts. So they were very willing to work with me in terms of, you know, figuring out what she was going to eat and and what the carb counts were.
Stacey Simms 13:34 April, I know, it was kind of a different time, as you said, you went you say no technology, but you had shots and you had your meter, which is tech. Did anybody help you? I mean, at 12, you probably were okay. But I would always assume that there might be a little supervision or kind of over the shoulder. Are you doing all right? Do you remember how it was handled? What you did?
Right back to April answering that question. But first Diabetes Connections is brought to you by Dario. And over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for you on how to succeed, get the diabetes management plan that works with you and for you. Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to April answering my question of what her camp did to kind of help keep her on track.
April Blackwell 14:49 Yes, so this is actually something I think is really great about space camp. To the point that it inspired me to become a counselor while I was in college, but they're just You know, a very, they have everything planned out and under control as you would maybe expect space camp to have. So we had if you're familiar with Star Trek, we had a sick bay. That was it was just part of the camp experience. And even though Space Camp isn't necessarily geared towards kids with health conditions, it became just a seamless part of the whole camp experience. So, you know, every before every meal, the whole group would just swing by sickbay. And anyone who needed to take meds or like me check my blood sugar, take a shot, we just go into like they Well, everyone else was playing kickball or something, you know, for a few minutes. And it, it was awesome, because it didn't make you feel singled out at all. And it was just part of the whole camp experience. So I think that's a really great feeling as a kid. And it allows you to have that moment with the nurse or doctor to have sort of a one on one conversation about any sort of dosing Delta's that you should incorporate for upcoming activities.
Stacey Simms 16:11 She'll be did your kiddo have a similar experience like that? Did they do anything?
Shelby Hughes 16:16 That was kind of the same thing. There were other kids that took meds before meals, and they would kind of divert to the nurse's clinic. And she would, I think, I don't think she would take her insulin before meals that I think that the nurse would check her blood sugar, make sure her you know, everything was good with their pump. And then after, after dinner, I think she would, she would head by there and the nurse would would help her figure out how much to put in her pump.
Stacey Simms 16:48 It was really reassuring to me, I remember starting to kind of plan this in January of the year he when when he went in, you know, July or August or whenever it was, and calling the medical people and saying how are we going to do this, you know, at eight years old, I need eyes on him to make sure that he's changing his pump site to make sure that his insulin cartridge is full, you know, trust but verify you're very independent, good kid, but still eight years old, you know, you're not gonna let him walk around camp by himself all the time doing everything. So she laughed and said, Oh, that whole cabin goes gets medication. That age, you know, and you forget that there are other kids with issues go into camp. And what we we didn't have to work it out at all. Because that cabin and not everybody, but you know, a bunch of the kids in that cabin would get in a golf cart. This is a very large camp, get on a golf cart, and go up to the infirmary, which I'm going to suggest which should be Star Trek themed as sick. But they would go to the infirmary every night. And so when he was eight, that very first year, what we decided was, he'd go up with them every night, and they would physically look at the pump, and make sure that it was an animist pump. So had a battery, no charge, but they would check the battery, they would check that it had insulin, at least for the night, that his pump site, you know, they kind of kept track was changed every three days or whatever. And it just made me feel better that they had eyes on him. And it made them feel better, as well, something we added in the next couple of years, as I realized that, frankly, they weren't on top of the site changes as much as I thought they would be because they trusted Benny, who's a very wonderful kid, but isn't going to change his instead of three days, unless somebody is reminding him, let's face it. So what we did was at meals at most camps, they have meds in the dining hall, because a lot of kids have to take medications with food, at least at our camp to have a table. So I said, Why don't you just bring the inset every three days and pretend it's like an antibiotic or an ADHD medication, like write it down. And then every three days here, let's watch you change it. And he loved it because he truly had did not have to think about it at all. And that really helped once we started incorporating it more as a regular kind of medication thing. It made a lot more sense for everybody. And it took us I don't want to say three years before we thought about one of the things that I always like to think about is I want to make it easy on the camp. And I'm curious April, if your parents I know it's kind of a different time or whatever. It wasn't that long ago. Did your parents talk to them ahead of time or try to figure out ways to make it easier on them or do any education of the staff?
April Blackwell 19:18 Yeah, definitely. I know they were in contact with the the nurses group at their at Space Camp, before we even signed up to go to camp to make sure it was something feasible because you need to get your hopes up about going into camp and then you know have to do a detour. So that was really important and also our our endocrinologists, our pediatric and it was so good with this stuff. So they had you know, these resource papers to be able to give to the nurses topics to talk about while you're there checking in how to like set up all your supplies and have backup supplies and So I, I know my parents use those resources and share those resources with the nurses. They're at Space Camp.
Stacey Simms 20:08 You know, I meant to ask, one of the things that I get asked a lot is how does your child carry supplies around camp? I'd be curious to know, April and again, I'll start with you. How did you do it? obviously different technology. Did you carry stuff everywhere you went? Did you have a central location.
April Blackwell 20:25 So the space camp in California was pretty small. So we, we had everything centrally located at the nurse's station. When I was a counselor at Space Camp in Huntsville, Alabama. It was a bigger facility. And the part that I was actually a counselor at was a little ways away from where the nurse's station was. So if we had any kids with issues that would potentially need immediate attention, we just carried like a little backpack with us and had their supplies with us all the time. Sometimes we'd be out in the woods or swimming or you know, doing some other activities. So we just like every counselor carried a little backpack and we had our own stuff, but also our our camper stuff in there, too.
Stacey Simms 21:12 Yeah, that's great. How about you Shelby? Did your daughter carry stuff?
Shelby Hughes 21:15 She did. She had a little like a little sling back, you know, backpack where she just kept water and glucose tablets. She didn't carry major things like sight changes or insulin. That was all in the nurse's station. But yeah, just just emergency things.
Stacey Simms 21:37 We sent Benny with a Camelback, you know, the kind of backpack that you have water in. And that worked out well, for a couple years. Then he was like, yeah, forget it, just taking the sling bag. He liked to have inserts. Because the pool for a while was notorious. We did find some stuff that worked. Everybody's skin is different. And this is not an endorsement and it's not a paid endorsement. But I will endorse a state put medical patches has been the only thing that works for him. And like I said, everybody's skin is different. But for a long time he carried in sets just because the pool was such a pain for him. But also, you have to have reasonable expectations. I know you all are wonderful and your children are super responsible. But Benny got Viggo. He's gonna like best camper or over silly awards, at the end in their cabin. And he got like most likely to leave your bag everywhere. And they were always bringing him his bag. You know, it's just ridiculous. But as he got older, he got better at that. And you know, you do have to have your stuff with you. And now I don't know, it seems like everybody, all these teenagers carry bags, diabetes or not. They always have stuff with them, even the guy so it's not a big deal anymore. As much as I'm interested in your experience, too, as a counselor, what kind of things do you think set a camper up for success? And listen, when I'm talking about success, I don't mean that their blood sugar is 95 the whole time they're a camp, right? You're gonna go up, you're gonna go down, you're gonna have wonky numbers. But I mean, like they're able to have a good time with minimal interruptions. They're able to leave with confidence. Is there anything that kind of goes through your mind, as I say those things? Yeah, I
April Blackwell 23:09 think preparation is key. And not just logistically the supplies and the directions for the nurse. But actually practicing being away from your parents or whoever helps you manage your diabetes for some shorter period of time. And probably very dependent on the kid too. But just maybe spending the night at grandma's house or friend's house for a night or two, and seeing how everything works and how it goes. And it's also, I think, a little preparation for the parents. Because in my experience as a counselor, you know, even though I had diabetes, and I did have a couple campers that had diabetes, as well, you know, their parents would stay in a hotel that was close to site, even though most campers flew there to go to space camp, but their parents would stay in a hotel, they would check on him every night or at some time during the day. You know, they may even give them injections or boluses. They had one who sort of like pre loaded their kid before bed with a bunch of pudding. Because they always went low overnight, which to me sounds like maybe we should change some other settings. But that's not my call to make so right. You know, as counselors, we we need to just respect the wishes of the parents I think is really important. And so, I don't know if you know, having that practice beforehand, for both both sides of it, the camper and the parents, I think is a good idea beforehand.
Stacey Simms 24:47 Yeah, man, it's gonna be hard to do nothing and then go to a week or two weeks away if your kids never been out of the house or you shouldn't say it like that if your kids never spent an overnight somewhere. That's a great bit of advice. Shelby Any thoughts? I mean, is a bunch of questions there. But, you know, kind of to set up for success. Was there anything that you've learned over those years that your daughter was at this camp?
Shelby Hughes 25:09 Um, you know, I didn't think about it. But yeah, I think having them spend the night out before you, you know, shut them off for a week or more is good. Unfortunately, we had had some opportunities for Caroline to have sleep overs preceding the camp experience, so that that was good. And they weren't perfect. But you know, I think the goal is just to stay alive. And we're good.
Stacey Simms 25:39 We have a similar sense of humor to Shelby and I. So I know, I know, you have a sense of humor to April. It's just right. I mean, you know, we hate to be blunt, but you know that that's what everybody's scared of. Right? When you're sending your child off, and they they are fine, they are fine. They are
Shelby Hughes 25:57 now looking looking at CGM data after she came back from Camp, and I was horrified to see that she was, you know, running high throughout the night, we figured out later it was they were giving her like those Lara bars, Richard 25 carbs, you know, before bed, so, of course, she was running high all night, but you know, it was fine. She she had a good time, and she was alive. And that was what that was what mattered.
Stacey Simms 26:31 And I think this is a really good time to talk about expectations. Right? And, and what what are your goals for your child with diabetes going to a regular camp, and I'll kind of take an opportunity to speak on that, you know, if your goal is going to be that your child stay in a very tight range, you're going to set yourself up for disappointment most of the time. Now, some kids are rock stars, and for whatever reason, you know, they're they're able to do this, some camps are going to help you with that. But I always tell parents, you know, camp is not the time to worry about that. Incredible a one see that you're going to run and post on social media, but you shouldn't be doing anyway. Campus, the time for your child to learn about themselves, to stretch the limits, to push to make mistakes, to to figure out who they are when they're not at home. And the flip side of that is for you to figure out who the heck you are without your kids around. It is a gift and a full month. And I'm not an endocrinologist. So ask your doctor a full month at a slightly higher time in range right or slightly, excuse me slightly lower time and range a slightly higher blood sugar average, balanced with the incredible life experience that your kid is going to get is worth it. It's not you know, we're not talking about kids running at 300 for a month, if that's happening, you need to adjust things you need to I'll talk about checking in and things like that. But I know I'm in a bit of a soapbox here. But I really believe that giving Benny the opportunity to make mistakes and to learn at camp. And you know, I'll be I'll be very open because I know people tiptoe around this. You know, his agencies throughout his whole life have been fine. Sometimes they've been great. They've been amazing. Sometimes they've been minor. But a camp has average blood sugar was usually and this is over seven or eight years, anywhere between like 150 and 200. Sometimes I think one year is he came home and it was like 220. And that's when we realized we also need to make some changes, the hormones were insane. And we need to pour like gallons of insulin on him. Some of you heard that and are calling Child Protective Services. Right? You think I'm the worst? I am the world's worst diabetes. Mom. Some of you heard that and say, Oh my God, that's doable. I can I can live with that. You've got to figure this out. Because if you think you're going to send you if you think you're going to send your child to diabetes camp, and they're going to be 83 the whole time. They're there. You are in for disappointment. All right. I'll get off the soapbox. April. I saw you nodding. I'm not a terrible parent. Right?
April Blackwell 29:07 Absolutely. And my kids aren't quite old enough to send to camp yet there are only two and five. Oh, gosh, I'm not quite to the center camp age yet. But you know, they have spent nights away at grandma and grandpa's house before so even even though they don't have diabetes, you know, the worry still creeps in and, you know, making sure there's instructions or you know, times was really important to me for my first hit. And now with a second I'm like, whatever, you know, just have fun. Like, hopefully they get a nap in there at some point. Yes. So I imagine with diabetes, it's still very, you know, maybe amped up a little bit just because there are, you know, real consequences eventually for for numbers. But, you know, I think that's important to realize and kind of pull back that You know, when you're looking at how much a kid can gain from a camp experience, you just you can't put a number, even a blood sugar number on that. So as long as they're safe and healthy, I think it's an absolutely necessary experience.
Unknown Speaker 30:17 Wow. How about you, Shelby?
Shelby Hughes 30:21 Well, I was going to talk to the fact that at diabetes camp, which she also went to that same summer, that first year she went to non diabetes camp, she probably her her blood sugar was probably a lot higher at diabetes camp, because they're, they're more, I guess, more cautious about them being too low. So she told me, they would check her blood sugar and say, Oh, you're 150 here have a snack.
Unknown Speaker 30:51 Same thing.
Shelby Hughes 30:53 And we really we joke about that now, like, she'll say, Oh, I'm at 150. I should have a snack. But I can't remember the question. What am
Stacey Simms 31:02 Oh, that's okay. Um, and I think that's a good just quickly, I think this is really good to talk about context. Right? Because 150 at diabetes camp, have a snack. Makes sense. There are dozens of kids there. They are doing lots of activities. They are trying to keep everybody safe. They probably you know, at the time, I know every campus kind of trying to keep up here. Nobody's monitoring everybody's CGM. Right, so it's totally different setup. But when you're at home, 150 have a snack is funny. Because you know, she doesn't need it. Right. The question was the balance of running a little higher and being okay with that at camp?
Shelby Hughes 31:40 Oh, absolutely. You know, I think camp is, I guess, because I went to summer camp for a month, every year when I was a kid from the time I was nine till I was 15. And it shaped who I am today, I would not be the same person. If I had not had overnight camp experience. And I see my kids friends that don't go away to camp. And now they're 18. And they're state date. Some of them struggle with going away to college. And I feel like if they've gone to summer camp, they might be doing a little bit better. So I guess that's, I'm a, I'm a huge fan of sleepaway camp, you know, no matter what. So I agree, running a little bit higher to have that life experience is definitely worth it.
Stacey Simms 32:34 One thing I want to make sure to mention, I talked about this towards the beginning of our little roundtable here, and I wanted to circle back to it was adjusting basal rates, because when your diabetes camp, you know, they'll send you home with the form of we adjusted everything. Usually they knock the kid down 10 to 15% less basil, because it's so active. But by the time diabetes camp was over, Benny usually was getting 25% less insulin because they were so active. And it's really hilly, and they do lots of swimming, and there's hiking all this stuff. So what we would do is use that as a baseline for, you know, regular camp, I loved it, because it was like a great test for that week. And then he'd go for the month, we found regular this regular camp to be even more intense than diabetes camp. So we were always adjusting. And one of the things we did we put in place in the second year and going forward was, I would check in three days after he was there. They would call me if there was anything to deal with before that, they would call me three days in. And then every Sunday, we would have a check in. And usually the check in was like I need deodorant or stamp serve is ridiculous. It was never It was almost never about diabetes. But it was a good way for me to check in and say Do we need to adjust basil? Is everything going? Okay, how our supplies looking? That kind of stuff. So I know that she'll be your daughter was at Camp a little bit less time. But did you talk to them about when to call you or checking in on anything like that?
Shelby Hughes 33:58 The first year she went, we didn't have any scheduled check ins. It was such a short period of time, but the nurse was really, really great and would text me and just say, you know, everything's looking good. She changed her site today. And, you know, just just a brief, you know, let let mom know that things are things are okay. We didn't, you know, we didn't really have the need to do any formal. Any. And there were no times that we really needed to make adjustments because the the time there was so short.
Stacey Simms 34:29 April, I want to ask you about that kind of as a counselor on the other end, because you would be the one getting the phone call. I'm not gonna ask you as you said, You've got to listen to what the parents want. So I'm not asking to make a judgment call here. But what was helpful that the parents that some parents did that you would recommend, was there anything that they did that you'd say yes, that's a good one.
April Blackwell 34:51 I think preparing beforehand and being ready to talk to the counselor. I know every camp is a little different and how we did it at base camp was each team would have two counselors. So like a morning and afternoon, evening, and having a face to face with the person who's going to be next to your kid for eight or nine hours a day or more, I think is really important. And you know, it also kind of calibrates the counselor with how serious this could be, things to watch out for, because they may not be that familiar with it. You know, when when to call the nurse, because even that may be a little bit foreign. If you're not familiar, maybe specific signs your child has for going low or going high or times to check on them. I think that face to face time is really important if you're if you're able to do it. So I know my parents did that with my counselor. When I went to space camp, I remember them sitting down and talking to her face to face. And I did it with several of my campers as well. So I think it's really important.
Stacey Simms 35:59 That is that's really good. One of the things that I also like to talk about is there are very few non negotiables for me, when I send Benny to camp or my daughter for that matter, but I do have one. And this is the kind of thing where I tell the camp upfront look, you know, things are gonna happen. diabetes can be wonky. Usually Benny can troubleshoot you don't have to call me. And like most camps, they're gonna call you for kids running a fever, or you know, anything happens. anything out of the ordinary. But my non negotiable has always been if he throws up more than once in 24 hours, they must call me because more than Lowe's overnight, which I know most people are terrified. I'm not that worried about Lowe's overnight. You know, it's it's rare that those are actually emergencies. And Benny always sleeps at camp with a, you know, a drink by his side or glucose tabs by his side, which I should have mentioned up front. This is I'm getting off topic here. But one of the best things we did for both my kids was we found these next two bunk shelves. They're like fabric shelves or you know, bunk bed shelves. There's all sorts of different kinds of just, you bring them to camping and shove them into the bed. And then they had a little shelf next to them. So when Benny goes on sleep overs, I don't even think he does anymore. He's 16. And it's a different world for him. But when he was younger, he always had a Gatorade next time it's sleep over. So if you woke up and felt weird, our rule is drink the Gatorade, then check your blood sugar. And that's not how we do it at home. It's like the 150 have a snack. I would never say drink 25 carbs before he checked your blood sugar. But at a sleepaway camp, just do it and check and we can figure it out later. And he does the same thing at camp. But I'm worried about highs, I worried about dehydration, I worried about them not really knowing if he was high, because nobody was following him on Dexcom. They looked at his blood sugar when he was younger. So I was terrified of decay and things like that. Never happened never got close. But that was my one non negotiable. And that'll be my non negotiable for this summer, too. Do you all have anything like that? April, I'll start with you. You know,
April Blackwell 38:02 I don't know that my parents ever did just because I didn't physically have any symptoms like that outside the camp. And I think that really dictated what they discussed with the nurse and the counselors there. So I know that I did carry glucose tablets, those like really gross square ones that are in like, packaging. I don't even know if they have those anymore. But I remember sticking those in my I even got special shorts for when I went to space camp that were like cargo shorts. So they had extra pockets for the Yeah, but I don't remember them saying any specific symptoms like that. To the staff there.
Stacey Simms 38:43 Did and I should have asked you this earlier. Did anybody have to supervise you? I mean, at 12? You were probably independent enough, but I'm just curious, do you remember if anybody like watched you do injections or your meter over your shoulder or anything like that?
April Blackwell 38:57 I just checked my blood sugar at the nurse's station. So the nurse or sickbay? The nurse always did. You know, look at the number I assume she you know, processed that and and thought about the injection I was giving if it made sense. But no, I don't remember anyone supervising me really close? Yeah,
Stacey Simms 39:20 I think that's just kid age, you know, appropriate different stuff. You know, I don't think anybody really watches Benny anymore. But when he was eight, the I know, they looked over his shoulder. They didn't know what they were looking for. You know, I tried to give as much education as I could. But yeah, that's
April Blackwell 39:35 a good distinction, actually. Because, you know, at Space Camp when I was a counselor, we had kids from age seven all the way to 18. And you've definitely treated each age group differently and looked for different things. And it was even a different sort of mindset for the counselors. You know, if you were a counselor for the younger age group, you usually just work with the younger age group. And it was different set of counselors that worked with older age groups. So yeah, you kind of just get you trained yourself on what seven and eight year olds need from a counselor, which is more like a mothering thing than what 17 and 18 year olds?
Stacey Simms 40:14 I mean, at that age, you're still like, are you using soap in the shower? Like, you know, there's all sorts of different things that poor counselors have to do shall be saved, you have to have a non negotiable or anything like that. Um,
Shelby Hughes 40:26 you know, it's funny, because I got, I think, kind of a set of directions from you before I sent Caroline to camp that you had, you gave me like a draft of what you had given to Ben? Oh, yeah. And so I can't remember if there was anything in there that was you know, about vomiting. Okay, so I must have had that in there. But I don't remember, particularly going over that with the nurse or with the counselor. Just because it's, it's honestly, it's not ever we've not ever had an issue. vomiting is never caused any kind of a of a problem for us. So, and back then I was still new. So I really probably wasn't even on my radar. Yeah, let now there there were no non negotiables. But now thinking back maybe there should have been fun. You know,
Stacey Simms 41:22 I think it's all a question too, of trusting the medical staff and you had already had kids go through that. So like I said, they're going to call they called me, you know, for my daughter hit her head on the side of the pool. They call you for the he's got a rash they call generally, they're going to call you for those things. And we've where I got a knock wood or something Benny's never had even large ketones maybe once or twice in 14 years, he's never had vomiting associated with dehydration or things like that. Knock on wood. We've never had that problem. But for some reason that stuck in my mind is something like, Uh huh. This is going to be the thing that happens at camp. And you know, I am I'm kind of Cavalier and I make jokes, and I worry a lot. Right? You, you can't help it, you still send them. But and I think that's just a mom thing. I mean, April, your kids are too little for camp, and they don't have diabetes. But you've got to worry a little when you send people to grandma's house. That's just mom stuff.
April Blackwell 42:21 Exactly. Yep. Absolutely.
Stacey Simms 42:23 Yeah. And mentioning the the forums, Shelby, I forgot that I did that, you know, I have these like, they're nothing. It's nothing that you can download. It's nothing formal. Shelby and I have known each other a long time. So I just sent her my stuff. But one thing that was very helpful if your endo is on board with this, we typed up kind of an action plan. And I'll look at it and make a note at the end of this episode, or in the show notes. It wasn't super detailed. It was kind of more if this, then that, like Benny will do this. And we hope you'll support with that or like really insets to the med table or go into sick beta, check your blood sugar, those kinds of things are written out. And then we had our endo sign it. Now, my endo, God love him will pretty much sign anything I give him at this point, right? I mean, it's been 14 years, he knows we're okay. I'm not going to give him anything crazy. He would tell me if he thought it was off base. But this was fantastic. Because the magic words are always my doctor says. And if the camp sees that the endo has signed off on this plan. Not only are they going to probably follow it more closely, they're going to be much more reassured. Because a medical professional has looked at it. So I found that to be I forgot all about that Shelby, thanks for bringing that up. I found that to be really good. And I did that my kids went to day camp to and Benny went to you know, regular day camp. And that was super helpful for them. And we're actually doing to get in for Israel. You know, and my endo will Cyrus endo will sign off on it. So that's pretty good.
April Blackwell 43:50 I was just gonna say I think using your endo as a resource can be really helpful because if it's a local camp, they may have other kids in the in the practice that are going or have gone and have tips for interacting with the staff there. You know, the internet is also a great place to look up some Reddit forums on certain camps and see what's going on. And, you know, there's other diabetes specific forums to ask questions about specific camps and if you are able to talk to a parent that is sent a kid to a specific camp i think that's that's worth a lot, actually. Because Yeah, inside scoop, so
Stacey Simms 44:30 definitely. And it's funny with our camp we had there were two kids who are already at that camp during the current time with type one and one of them did not want anyone else to know. He, I think that's a very tough way to go. We respected it. My daughter knew she was her age at the older group, and we respected it and nobody, you know, did anything. But I think that to me, I would be extremely uncomfortable sending my child to camp with him wanting to keep his diabetes a secret from as many people as possible, because you never know who is going to need to help. And another one of my, I would call it a non negotiable but I think a kid who's going to sleepaway camp who's got type one should know how to check his or her own blood sugar using a meter. Because things happen, even if you're Dexcom, you know, all over 24 seven, gotta know how to do your meter, got to know how to use your pump, gotta know how to change your own insets even if there's help there. And and I think you have to be a kid who's gonna raise your hand and ask for help. And that's something that you can teach. But you've also got to know your kid will do. And I see everybody nodding Shelby, was that something that you either you knew your kid would do? Or you had you thought about that?
Shelby Hughes 45:44 Well, Caroline's pretty responsible. I mean, I'm not gonna say 100% compliant, you know, she still forgets to bolus and she's, you know, she's 11 now, and she's independent at school. And still, she'll forget to balls for lunch, and, you know, whatever. But I felt like she was responsible enough to do those things. She, she, she knew how to check her blood sugar. I taught her how to change her sights. She doesn't probably her biggest issue is asking for help, because she does not want to seem different. And she doesn't want to call attention to herself. She just choose a shy kid. She does not like calling attention to herself about anything, including diabetes. But I think that if she really needed help, she would speak up.
April Blackwell 46:38 You know, I don't have a kid with diabetes myself. So it's a little bit hard for me to say, but I think it would be something great to tell the counselor when you meet with them, and just say, hey, like, they're not gonna tell you when they need help. I know, I actually experienced that myself. I remember actually, the moment we pulled up to diabetes camp and got off the bus and there was like a, everyone check their blood sugar moment, and my blood sugar was in the 40s. Just because I was like, so overwhelmed about going to camp with all these diabetics that I had never been around that many people a day. And she was like, do you feel low? And I was like, Yeah. Like, it was just, it was like, almost out of body experience. So camp itself can kind of maybe mask those, you know, symptoms or times when someone would feel comfortable speaking up, just being overwhelmed at being at camp and being excited about it could change a little bit. So it's it's something good to bring up with the counselor. I think
Stacey Simms 47:41 I do, too. We also had the counselors kind of check on him every night. And it wasn't Benny is your diabetes. Okay, what's going on? like we talked about it so that he would just say, Benny, are you okay? Like, Benny? Are you set? And what that meant was? Is your pump charged? Does your pump have insulin in it? Is your blood sugar? Like, are you feeling okay? Do you need me for anything? And so it didn't become this big conversation every night. But I still felt and I you know, again, I see you guys know, I say all the time about Benny, he's a great kid, and he's doing really well. But you know, he forgets he's staying down. He will wake up at two in the morning. Oh, my pumps, no charge, you know, things like that. So to set him up for success, we really felt like having the counselors involved, but not overly, you know, in his face about diabetes was very helpful. I don't know what really went on. This is my fantasy of what I think happened to camp I'm not sure because they tell me these things happen. But you know, Ben, he's gonna turn 25 and write his own book and it's gonna be like, nothing happened the way you thought I shouldn't say that. Like, that's terrible to put in people's
Unknown Speaker 48:42 but I do have you know, I
Stacey Simms 48:43 have my doubts that my perfect systems are executed perfectly.
Shelby Hughes 48:49 Alright, before I let you all go, is there anything you want to say any good stuff about camp anything we missed? You know, nothing, nothing earth shattering but after two years of regular camp, and two years of diabetes camp, and then of course last year, there were no pants. She was we before COVID she had made the decision that she only wanted to go to diabetes camp. I think and I and I we respected that. You know, she and I asked her why and she said I just don't like being the only one there with diabetes. So of course this summer now you know, everything's up in the air. The the one camp that we are looking at is now going to a modified sleepaway. Maybe I don't even know so I think we're just gonna skip camps all together this year, too, which is so unfortunate because she's getting to be the age where she won't want to get a camp when she's older anyway, but that's it. She just she she prefers diabetes camp now because she's not singled out. Cool.
Stacey Simms 49:57 April, any last words?
April Blackwell 50:00 I would just say one thing to watch out for is even if a camp generically allows or supports people at type 1 diabetes to come, there may be certain activities that are still restricted. I know at Space Camp, for instance, the older kids were allowed to go scuba diving in our underwater astronaut trainer. But that was not allowed if you had type 1 diabetes. So I guess, you know, think about kind of the activities that are going to happen at camp. And that's going to somehow negatively affect your your T one DS sort of mental state on that, because I think it would have for me, you know, being that singled out, not just check your blood sugar, but you can't do this activity. So be sure to think about that. And then the other thing is just, probably your kid's gonna be fine. And if they run into any problems, it's probably not even diabetes related. It's like, you know, they have a problem with this friend, or, you know, they're homesick or they're missing their dog or something. So keep that in mind that there's a lot more to kids than diabetes.
Stacey Simms 51:08 Wow. And you know, that's such a great point about the scuba, because there usually is an alternative. For big time adventure stuff. There isn't always so it's good to check. But I'll give another example. Two years ago, gosh, I can't believe how much time has gone by the big activity for Benny's age group at this camp included like this cave thing. And I don't know why it was cave swimming. I don't remember. But it was tiny spaces. And the way they described it like I wanted to, I wanted to throw up just because forget diabetes. I was so claustrophobic thinking about it. But my daughter had done it. Because she went to this camp. And we talked about it. And I was super uncomfortable. Like I let him do anything. But like holy cow, if you get stuck in a cave, like Oh, just type one. You know, they were they didn't say anything to me. I we didn't get that forward. I even asked them I asked Benny. And he was like mom, no way. I just sounds like a hassle for everybody. And he just didn't like the idea of it. So we really dodged that bullet. But there was an alternative program for any kid who didn't want to do it. Because it's it really was kind of scary sounding. And so that was great. But if you were you know, and the alternative program wasn't playing cards in the, you know, inside, it was doing another outside fun activity. But that's a great idea to check because there are there are going to sometimes be limitations, especially at camps that do not cater to people with type one who don't have all the facilities and all the knowledge. And we have to learn sometimes that there's there's going to have to be an alternative. There's going to have to be an adjustment that we in our children have to make. Does it stink? Yeah. But sometimes I think it's the price you pay for an overall wonderful life lesson and experience. Later, ladies, thank you. Thank you. Thank you so much for joining me. I really appreciate your time to share your experiences. It was so great. And I shall be I hope camp. Hope diabetes camp happens. or different things, you know, go this summer, but but keep us posted.
Shelby Hughes 52:59 All right. Thanks for having me.
Unknown Speaker 53:01 Oh my gosh, thank you all. Alright, thanks, Stacy.
Stacey Simms 53:10 Lots more to share. I'm going to talk about food, carb counting glucagon training, and share and follow at sleepaway camp. In just a moment. I want to add a couple of things to the end of this episode. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children become more independent. These transitional times are tricky elementary to middle middle to high school. I mean, you know what I mean? Using the Dexcom really makes a big difference. For us. It is not all about sharing follow, although that is very helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school, or for a second grader to just show their care team the number before Jim. At one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.
Little bit more about camp and some tips and tricks that we learned along the way. Shelby mentioned the menu. I did this as well, I got the menu from Camp. And most camps know what they're serving every single day or they have you know, very even if they don't have a strict menu, they know the foods that they will be serving. So go ahead and ask for that. I broke it all down. I made a calendar is like a stamp that I laminated it, but let me close enough. I think they use it for the first year or two. But Benny found it was much easier to just guesstimate on carbs. I mean, he's that kind of kid. They were comfortable with him doing it. And one of the things that we started doing because honestly most camps serve very high carb foods. Think about what camp foods are going to be for kids, right you're you're serving them. food to sometimes hundreds of kids, some of these camps are very big. So it's gonna be quick and cheaper and full of carbs. So what I had him start doing was as soon as you walk into the dining hall, give yourself 25 carbs, you know, you're getting 25 carbs, and then do the rest after. And that really helped him at least get started. So he wasn't going that much higher than he would have, you know, after a big breakfast or things like that. That was very helpful. It is never going to be an exact science at these camps. Some places will have a helper. I know some parents have been very lucky. And they have a counselor who will sit or you know, a staff member who will swing by Ben, he hated that the first year, he had to show them what he was eating. And I didn't think about how difficult that would be, especially for a kid who likes to eat, and is on the bigger side. He got some blowback. And that was actually not a great decision that we made. I'm not sure I would do that again. You know, if you wanted second helpings, a lot of times he got an eyebrow raised at him. Luckily, he's a pretty confident cool kid. We talked about it, he shook it off, and he ate what he wanted to, but, but we had some blowback on that, that I had to discuss with them at at the end of the summer. We learned they learned it was it was a good experience all around. But just a heads up that those kind of things can happen. glucagon training. This is another non negotiable. I didn't mention it. But I think this is really important. The newer glucagons, Baqsimi, Gvoke Hypopen that I talked about, make this much easier. But I did the red box training, you know, those of you who were diagnosed, gosh, it's really only a year or two that those products have been out. So those of you diagnosed two, three years ago, know what I mean, you take the red box out, and you have to teach everybody how to swirl don't shake, you know how to inject that needle. It's much easier now. But I think it's important to talk to the camp about who would who would administer that. And we decided it would not be his counselor. The counselors in the cabin are all connected to the infirmary. And somebody is on call 24 seven, so they would walkie talkie. And what we decided was if they felt felt they needed it, they would call the infirmary to come down. And they could be there in less than five minutes. I mean, it was really something that we felt good about. I think with vaccine me now and hypo Penn, whichever you choose, I would be fine with a counselor doing it. I just figured with the red box stuff. Everybody messes that up. I mean, so many studies show that most people even more trained, don't do it correctly. So I kind of stopped training people on it, which is why I legitimately Yes, it's a commercial. But I'm so glad to have alternatives. Because it's not safe not to train people on that and never had to use it. But that's another non negotiable. And let's just talk for a minute about share and follow. Sometimes the decision is made for you on this because there's no Wi Fi or cell signal at camp. Benny's camp is in the middle, we call it the middle of the middle of nowhere. Wi Fi service is terrible cell service is pretty much non existent. Another carrier has a better luck there. You know Verizon is okay. But we have at&t that sort of thing. The first year he went to camp, he didn't even have Dexcom. As I mentioned, the next year he didn't have share. So by the time he was going back to camp for the third year, I was like, I'm not gonna use shared camp, it wasn't even a concern. It wasn't even a thought. And I get a lot of parents who look at me like I'm absolutely bananas for not sharing. So here's what I have to say about that. I actually think it's better overall, if you can let your child go to camp without the share and follow. Now, you've got to talk to the counselors about the beeping, you know, Benny had his receiver, always next to him in bed. And what that means if he's beeping overnight, right, if he's low, and it's urgent, low goes off, they've got to make sure he's okay. But they're in a cabin together. They don't need to remote monitor him. They're in the same room with him. So they're gonna hear that beeping. So I always felt okay about that. And then we use the T slim pump. So the CGM is right on the pump. So you don't need the receiver anymore. But I did a talk about camp earlier this year. And I had a mom and I didn't I don't think about this, because we don't use Omnipod. She said, I have to use the phone. We don't have a receiver. Our camp has a policy, no screens, no screens, even a phone is a screen. So I immediately was thinking how is she going to do this. And I think I would rather have my child who is used to using Dexcom. Use the technology, you don't have to take the Dexcom away, right. So use the phone as the receiver because the Bluetooth will still work, haven't put it on airplane mode or whatever. But the Bluetooth will still work in the phone, the alarms will still go off, talk to the camp about, hey, she's not playing games, they're not taking photos, make sure your kid is following the rules. If you don't have a receiver, and the phone is all you've got, I think that that is better and more realistic than expecting a child who's used a Dexcom either since day one, or for a couple of years to go back to finger sticks. You're just not going to get the results that you want. I mean, let's be real. As I said in that commercial, I just said you know you're not going to do the middle schoolers not going to do the finger sticks if they've got the Dexcom Why would they do So those kind of accommodations can really help. But in terms of the parents following along, here's the question, if the camp lets you do this, and you think it's vitally important, you guys have to set up a plan with camp. If it's 2am, and the low alarm goes off, Who are you calling? What are you doing? Right? Who are you alerting, they already know, they're already on it. And if you want to double check, pay, that's your prerogative as a parent, if the camp agrees to it. You just have to have a plan. I would not know who to call, I guess I would call the infirmary. And I couldn't call the cabin, you have to kind of figure out those things. And I know we're getting really long. But just one more quick thing. I have seen this happen at our local diabetes camp. If your child uses non FDA approved technology, you nightscout folks know what I'm talking about you openaps people, I see you out there, you have to have a conversation with the diabetes camp, about whether they will be allowed to use it. Now, this is years old of this conversation. So most diabetes camps have settled it. I talked to a mom who loops with Omni pod, which is not FDA approved right now about what to disclose to her regular summer camp. Isn't that an interesting question? It's not FDA approved. But she's sending them there with the loop. Because it's better, she gets better control, then the Omnipod by itself. So, you know, my advice was to kind of explain it to them, you'd have to go into all the details about you know, big red flashing light, this is FDA, this is not FDA approved, blah, blah, blah. But I thought that was a really interesting question. Maybe we'll put that in our survey this week. Or I'll ask in the Facebook group, you know, how much do you disclose to people who don't really understand and don't need to really understand, you know, she she needs to know that if the Reilly link craps out or gets wet, you know, that kind of thing at camp, she has to have a plan B. And I think that's fine. But man, you know, the Do It Yourself crowd is fantastic. You know, I love you. But when you've got people who have liability issues because they're taking care of your kids, I'd be interested in hearing some of those stories and how you've done it and maneuvered and made everybody comfortable. Okay, well, thanks for sticking around. thank you as always to my editor John Bukenas from audio editing solutions. Thank you for listening. We've got a classic episode coming up in just a couple of days. Advice for taking diabetes, to Disney to Disney World and Disneyland because those vacations are unlike many others, and they're very expensive. So how do you do it? We'll talk about it. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.
Announcer 1:02:42 Diabetes Connections is a production of Stacey Simms Media.
Benny 1:02:46 All Rights Reserved all wrongs avenged.
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| 05 Apr 2016 | Sam Talbot - Celebrity Chef with Type 1 Diabetes / Diabetes Dominator | 00:57:20 | |
Sam Talbot shot to fame as a finalist on Bravo's Top Chef, then helped found the new diabetes advocacy group, Beyond Type 1. Diagnosed with type 1 when he was 11, Sam shares his love of healthy food, clean eating and managing diabetes despite a very busy schedule & lots of travel. Our Community Connection this week is health coach Daniele Hargenrader, better known at Diabetes Dominator. She's overcome her own health and life challenges with gusto and now helps others succeed. | |||
| 07 Apr 2020 | Q&A: Lilly "Insulin Value Program" Sets Price At $35 Monthly | 00:20:21 | |
Lilly Diabetes announced this morning it would cut the price of its insulin to $35. What does this really mean? How long will it last? Why are those with government insurance left out? Stacey asks your questions and gets answers from Lilly's US Insulin Brand Leader, Andy Vicari. Here's the Full Lilly News Release (link) From the press release: “In response to the crisis caused by COVID-19, Eli Lilly and Company (NYSE: LLY) is introducing the Lilly Insulin Value Program, allowing anyone with commercial insurance and those without insurance at all to fill their monthly prescription of Lilly insulin for $35. The program is effective today and covers most Lilly insulins including all Humalog® (insulin lispro injection 100 units/mL) formulations.” That’s right. Lilly is putting the price of insulin – including Humalog – at $35. You need a coupon, but it’s for anyone with or without commercial insurance, except for those on Medicaid. “The savings can be obtained by calling the Lilly Diabetes Solution Center at (833) 808-1234. The Solution Center is open 8 am to 8 pm (EST) Monday through Friday. Representatives at the Solution Center will help people with diabetes obtain a card in the most convenient way for them, including through email or the U.S. mail. A card can typically be received within 24 hours by email. If you already have a co-pay card from the Lilly Diabetes Solution Center for an amount higher than $35, no action is necessary. Active co-pay cards have been re-set to a $35 co-pay.” Link to Stacey's conference call March 16th with Andy Vicari ----- Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:06 Andy Vicari 3:15 Stacey Simms 3:19 Andy Vicari 3:30 Stacey Simms 3:51 Andy Vicari 4:12 Stacey Simms 5:09 Andy Vicari 5:27 Stacey Simms 6:32 Andy Vicari 6:45 Stacey Simms 7:26 Andy Vicari 7:34 Stacey Simms 8:44 Andy Vicari 9:01 Stacey Simms 9:33 Andy Vicari 9:56 Stacey Simms 10:38 Andy Vicari 10:54 Stacey Simms 11:38 Andy Vicari 12:10 Stacey Simms 13:34 Andy Vicari 13:42 Stacey Simms 14:27 Andy Vicari 14:35 Stacey Simms 15:07 Andy Vicari 15:35 Stacey Simms 16:46 Unknown Speaker 17:13 Stacey Simms 17:23 Unknown Speaker 20:08 Transcribed by https://otter.ai | |||
| 25 Jun 2021 | In the News... Government vs Insulin Companies, Afrezza Covered, #DData2021, and more! | 00:06:11 | |
It's "In the News..." the only LIVE diabetes newscast! Top stories this week:  Maine passes insulin safety net programMS Attorney General vs Insulin CompaniesAfrezza covered by MedicareD-Data Exchange newsLooking ahead to ADA2021Join Stacey live each Wednesday at 4:30pm EDT at www.facebook.com/diabetesconnections Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. We do this live on Facebook so whether you’re joining me right now or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. As always, I’m going to link up my sources in the Facebook comments and in the show notes at d-c dot com so you can read more when you have the time. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” XX first off.. want to give you a heads up that ADA Scientific Sessions is kicking off this weekend, so expect to hear studies from just about everyone in the space. I’ve got interviews lined up for the main show. There are usually some breakthroughs and – while you can’t really count on it – some FDA approvals seem to come out this time of year as well. Stay tuned and follow the hashtag #2021ADA . XX Legislation news.. the Governor of Maine last night signed a new law creating an insulin safety net program in that state. It allows eligible Mainers to go to a pharmacy to get a 30 day emergency supply of insulin caped at $35. It’s modeled after a Minnesota law that was passed last year, the “Alec Smith Insulin Affordability Act.” Exactly what eligible means in this case it tough to find.. although it looks like everyone with type 1 who has less than a seven day supply – and - with some exceptions, can be used once every 12 months. https://www.wmtw.com/article/democrats-propose-bill-that-would-create-insulin-safety-net-program-cap-price-for-one-monthly-supply-at-dollar35/36512006 XX Mississippi’s Attorney General Lynn Fitch has filed a lawsuit against drug manufacturers and pharmacy benefit managers she says are working together to manipulate and inflate insulin prices. She says, quote, “ As the mother of a diabetic, I know the emotional, physical, and financial toll the unconscionable price of insulin has on families,” These companies are exploiting the vulnerable. I’m fighting back because you should never have to decide between paying the ever-increasing price of insulin or compromising your care.” The complaint alleges violations of the Mississippi Consumer Protection Act for unfair and deceptive practices as well as unjust enrichment and civil conspiracy. https://khn.org/morning-breakout/mississippi-attorney-general-alleges-insulin-price-fixing-sues-makers/ XX Starting next year, Afrezza inhaled insulin will be covered by Medicare. It will offer all doses under the 2022 Medicare Part D Senior Savings Model.. capping the co-pay per 30-day supply at 35-dollars. Afrezza is the only inhaled ultra rapid acting mealtime insulin in the US. MannKind – the company that makes it – has other assistance programs. But this is the first time it’s covered by Medicare https://www.globenewswire.com/en/news-release/2021/03/15/2192789/29517/en/MannKind-to-Participate-in-2022-Medicare-Part-D-Senior-Savings-Model-to-Make-Insulin-More-Affordable-for-Seniors.html XX Some updates on the The American Diabetes Association's Standards of Medical Care in Diabetes. These include more information on heart and kidney disease in type 2 and the studies we’ve been talking about for a while about teplizumab. Those show THAT medication can delay onset of type 1 in high risk relatives of people with T1D. https://www.medscape.com/viewarticle/953438 XX DiabetesMine hosted it’s D-Data ExChange – a biannual gathering of leaders in diabetes technology and innovation. Organizers say the focus was on increasing access, expanding the market for tools like CGM to non-insulin users and consumers which has been a hot topic lately, and building out education and support. Couple of interesting presentations.. including Waveform – a new 14-day-wear CGM with a rechargeable transmitter and reusable sensor insertion tool. Levels – which is a consumer CGM product not just for people with diabetes and from Nudge BG – Diabetes inventor Lane Desborough’s new algorithm designed to slightly move or “nudge” basal insulin in response to CGM data. https://www.healthline.com/diabetesmine/summer-2021-diabetesmine-d-data-exchange-tackles-acces-education-and-support#Whats-on-the-June-#DData2021-program?
XX quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Back to the news… Canada has passed an act to establish a national framework for diabetes. The idea is to improve prevention, management and research. Diabetes Canada developed Diabetes 360° in collaboration with more than 100 groups and individuals from across the country. The World Health Organization recommends every country implement a national diabetes strategy-and since 2013, Canada has been without one https://www.diabetes.ca/media-room/press-releases/legislation-for-national-diabetes-framework-in-canada-becomes-law XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – it’s a bit up on the air right now.. but I am scheduled to take part in a news conference with Nick Jonas, who famously lives with type 1. I hope to bring that to you – and we’re sitting down with Dexcom’s CEO next week so if you have a question you want to ask, post it for me in Diabetes Connections – The Group. Our current episode out right now is all about the PROTECT trial –hoping to slow down or even stop diabetes in the newly diagnosed. Thanks and I’ll see you soon
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| 19 Dec 2017 | Lilly: The Newest Diabetes Device Maker | 01:13:48 | |
This week, insulin maker Eli Lilly enters the device market with announcements of a diabetes “ecosystem," including a new automated insulin pump and advanced pens. Stacey talks to Lilly's Dr. Howard Wolpert & Marie Schiller who both have substantial personal connections to type 1. They talk about why the company made this move, what the tech is all about and yes, Stacey brings up the price of insulin. In our Shoptalk segment, did you know the American Diabetes Association has someone dedicated to type 1? You’ll hear from Paul Madden, a longtime advocate who's lived with type 1 for 55 years. We also talk to The Diabetes Scholars Foundation's Mary Podjasek about and college scholarships for students with type 1. Links for this episode: "Lilly Initiates Clinical Trial...." (News Release) DiabetesMine article on Lilly devices Beyond Type 1 Holiday Carb Charts Project Blue November Holiday Tips & Special Events Shoptalk American Diabetes Association Shoptalk Diabetes Scholars Foundation ----- Join the New Diabetes Connections Facebook Group ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
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| 09 Sep 2022 | In the News.. Islet cell implant update, BG check with radio waves, preschool T1D detection & more! | 00:06:45 | |
It’s in the news! The top stories and headlines around the diabetes community this week include: A new way to sneak islet cells into the body without needing immunosuppressive drugs, routinely checking young children for T1D markets before symptoms show up, a non invasive way to measure blood glucose uses Radio Frequency, a DIY movement publishes in the New England Journal of Medicine and more! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM*Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. https://www.medscape.com/viewarticle/980356 Medtronic is waiting for FDA clearing of the new 780G.. already approved in Europe. New study results published in The Lancet Diabetes & Endocrinology, Medtronic announced Thursday put the AID pump up against multiple daily injections plus CGM. Small study, 82 people, all with an A1C over 8. After using the 780G for six months, the group saw a reduction of 1.4 percent in their levels with a quarter of that group dropping their A1C below 7. None of the MDI group dropped to that level. Time in range saw most improvement overnight. | |||
| 06 Jun 2023 | What does it mean to "Go Bionic?" - A deep dive into the newly-approved iLet system | 00:56:17 | |
The newly FDA-approved iLet Bionic Pancreas is the most hands-off automated insulin delivery system to be commercially available. At set up, all you enter is your weight and the only interaction with the pump is to announce meal size, no carb counting. Stacey talks with Beta Bionics CEO Sean Saint. We go through this pump system in lots of detail, talk about future plans – yes we’ll talk dual chambered pump which is the original design here - and get a little philosophical about the idea behind a hands off system.. especially for those of us used to being much more in the driver’s seat. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Beta Bionics: https://www.betabionics.com/ Our previous episodes about the iLet here: https://diabetes-connections.com/?s=ilet One of many write ups of clinical trials with the iLet system: https://www.nejm.org/doi/full/10.1056/NEJMoa2205225 Stacey mentioned our episode with ConvaTec about infusion sets: https://diabetes-connections.com/the-seven-day-infusion-set-is-here-whats-next-from-convatec-infusion-care/ Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 21 Jun 2024 | In the news.. Insulin pen shortage, Omnipod 5 update, once-weekly insulin approved in Canada, and more! | 00:07:59 | |
It’s In the News! A look at the top diabetes stories and headlines happening now. Top stories this week: South Africa runs out of insulin pens - and why this could happen anywhere, once-weekly insulin is approved in Canada, update on Omnipod 5 with Dexcom G7 rollout, more older people are getting type 1 but more people are living longer with it, CGM at the Olympcs and more! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com Episode transcription with links:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark XX Quick note – the American Diabetes Association Scientific Sessions is this weekend. That means new research studies will be released, technology announced, and likely lots of news will be made. I’m recording this before the conference starts – if there’s enough going on we may have an additional In the News next week. XX Our top story right now… XX No more insulin pens for South Africa.. .as the pharmaceutical industry shifts production priorities to blockbuster weight-loss drugs. Novo Nordisk, the company that has supplied South Africa with human insulin in pens for a decade, opted not to renew its contract, which expired last month. No other company has bid on the contract — to supply 14 million pens for the next three years, at about $2 per pen. Novo Nordisk’s drugs Ozempic and Wegovy, which are widely prescribed in the U.S. for weight loss, are sold in single-use pens produced by many of the same contracted manufacturers who make the multidose insulin pens. A month’s supply of Ozempic in the United States costs about $1,000, far more than insulin. Novo Nordisk dominates the global market for insulin in pens and has supplied South Africa since 2014. Eli Lilly, the other major producer, has indicated in recent months that it is struggling to keep up with the significant demand for its weight-loss drug Zepbound. Novo Nordisk is continuing to supply human insulin in vials to South Africa, where more than four million people live with diabetes, but pens are considered much easier to use and more precise. The vial system was phased out for most South Africans in 2014. But recently, South Africa’s National Department of Health instructed clinicians that they should teach patients how to use vials and syringes of insulin instead of pens. I posted about this already and said this is a canary in the coal mine and everyone going to ADA should be asking Novo and Lilly about this. GLP medications are fantastic but insulin cannot be left behind. https://www.nytimes.com/2024/06/19/health/insulin-pens-south-africa-ozempic-wegovy.html XX Once a week basal insulin – for type 1 and type 2 – comes to Canada. Novo Nordisk announced that it’s version of insulin icodec will be available starting June 30th. They are calling it.. Awiqli – I promise I didn’t make that up. Canada is the first country to get the product. Awiqli works as a time release of insulin over the course of a week. It is more expensive. And Canada's Drug Agency, which assesses drugs and recommends whether they should qualify for reimbursement under public drug plans, is still doing the math here. No word on private insurers coverage yet. An FDA advisory board recently passed on approving weekly basal for people with type 1, saying the risk of low blood sugar was too great. But the full FDA hasn’t yet weighed in.
https://www.ctvnews.ca/health/world-s-first-weekly-insulin-injection-coming-to-canada-in-2-weeks-manufacturer-says-1.6929321 XX The prevalence of people over 65 living with type 1 diabetes went up 180% in the past 30 years, a new study finds. That’s an increase of 1.3 million people over 65 in 1990 with the disease to 3.7 million in 2019, the authors noted in a study published on June 12 in The BMJ. Data included people from 204 countries and territories from 1990 to 2019. Dying from type 1 diabetes slipped by about 1% every year since 1990, the data also showed. The mortality for people 65 and up went down by 25% during the three decades covered in the study. The most rapid prevalence was in North Africa and the Middle East, and Western Europe, and the slowest increase in prevalence was in North America. All 21 regions around the world had an increased prevalence of type 1 diabetes in people over 65. The disease no longer contributes to a reduced life expectancy for many people due to medical care improvements, say these researchers. https://www.mcknights.com/news/report-type-1-diabetes-prevalence-in-older-adults-nearly-triples-since-1990s/ XX Hearing more about the limited rollout of Omnipod 5 with the Dexcom G7. This was announced in February but just seems to really be getting underway. A few people have received emails that people new to the system will be getting this first.. but that at the end of July current users will get a controller update so they can use G7 with the current pods. We’ll have more on this soon – I don’t have a link for you - but thanks to all of you who sent me those emails very much appreciate it. XX New life possible for Korean insulin pump EOPatch– this is a competitor to the Omnipod. A court has killed an injunction that meant the company, EOFlow, could not bring the patch pump to the US. Last year, the court initially granted that injunction and Medtronic backed out of an acquisition plan. No word yet from Medtronic if that deal is back on.. or if another company may work to bring EOFlow to the US. https://news.bloomberglaw.com/business-and-practice/ban-against-insulin-pump-patch-sales-reversed-by-federal-circuit XX The CeQur Simplicity patch is now FDA-cleared for up to 4 days of wear. This is a mechanical patch pump that replaces fast-acting injections. This is an extension from 3 days to four.. now each patch replaces up to 12 injections making it the longest wearable insulin delivery patch. The company says that can be 1000 fewer shots a year. Marketed mostly to people with type 2 diabetes who use insulin, the company says nearly 90% of patients using CeQur Simplicity reported following their insulin regimen better as compared to multiple daily injections.(4) The patch is clinically proven to improve glycemic control, with patients achieving significantly improved A1C and time-in-range (TIR) goals.(5,6) https://www.prweb.com/releases/cequr-simplicity-a-wearable-mealtime-insulin-delivery-device-obtains-fda-clearance-for-4-days-of-wear-to-further-simplify-diabetes-management-302173938.html XX A warning from Roche which says “dangerous counterfeits” of its diabetes medical devices ended up for sale on Amazon. Roche accused manufacturers and sellers based in India of selling counterfeit versions of test strips for its Accu-Chek glucometers. This is part of a federal lawsuit. Roche said the counterfeit test strips are expired or nearly expired products that are repackaged with counterfeit labels bearing Roche’s registered U.S. trademarks and fake expiration dates. After the suit was filed, a judge granted Roche’s request for a temporary restraining order to stop the defendants from selling the counterfeit products. The Amazon stores that were offering the products for sale appear to have been taken down. Amazon is not a defendant in the case, but Roche claims that as part of the alleged scheme all of the counterfeit products sent to the U.S. were stored at Amazon warehouses across the country, including in Brooklyn. https://www.cnbc.com/2024/06/10/roche-counterfeit-diabetes-medical-devices.html XX Edgepark Commercial XX Summer Olympics this year may be a showcase for CGMs. Abbott is sponsoring a Dutch long distance running, he’ll be wearing the Libre. Other athletes are using the CGMs in training and may wear as allowed in their sports. There isn’t a lot of proof yet that these devices make a big difference for people without diabetes.. but high level athletes are looking for any edge possible. Expect to hear a lot more about this in the lead up to the Olympics July 26th. https://learningenglish.voanews.com/a/olympic-athletes-turn-to-diabetes-technology-in-medal-chase/7653234.html XX Join us again soon! | |||
| 05 May 2020 | Where Was Your Diabetes in 2015? A Look Back After 300 Episodes | 01:04:04 | |
We started the show in Summer of 2015. This week, Stacey takes a look back at what was happening in diabetes technology at that time. Tandem had just announced you'd be able to upgrade without getting a new pump, Dexcom gave up on the Share cradle an Bigfoot & Beyond Type 1 were just coming on the scene. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, we share your stories! What was happening with your diabetes in 2015? Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! | |||
| 04 Apr 2023 | BD spinoff Embecta looks to build on 100 years of diabetes technology | 00:26:44 | |
This week… one of the oldest diabetes companies is looking ahead – Once part of BD, makers of needles and syringes, Embecta is now working on new technology like a patch pump. I’m talking to CEO Dev Kurdikar about moving the company forward, while still serving the patient community that relies on their established technology.
Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 22 Oct 2021 | In the News.. Dexcom Follow update, glucose eye scanner, stem cell research and more! | 00:07:05 | |
This week "In the News.." our top stories include: New features for Dexcom Follow, Vertex makes stem cell progress on a functional cure for type 1, funding comes through for a eye scan for glucose levels, a new aggregate diet/nutrition study measures T1D risk in babies, Medtronic snaps up a patch pump company and a lot more.. Join us LIVE every Wednesday at 4:30pm ET for the top diabetes headlines of the week. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and new this week – Live on YouTube.. and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their breakfast line and all of their great products in your local grocery store, Target or Costco. XX Earlier today, Dexcom released some new features for its Follow app. It now includes a Homescreen Widget to an Apple device, a Quick Glance for Android users. You can submit a Technical Support Request or Request a Callback via Follow’s Contact Menu. I assume that means you can request replacement sensors from within the app? And you can Access the Status page via Follow’s Help Menu to check the status of any of the Dexcom systems. This is version 4.4 of Dexcom Follow and only applies to US users. XX Some news in the stem cell race – a few companies now looking at this as a practical cure for type 1. Vertex announced that the first patient in its islet cell replacement therapy is doing well – with a lower A1C and less insulin needs. The person is on immunosuppressive therapy and does still need to use insulin – although 90-percent less. This caught my eye - this person was diagnosed 40 years ago – this isn’t a recent diagnosis. They also had incredible hypoglycemia, up to 5 episodes a day and pretty much have their life back now. One person does not make a cure but it’s good to see these therapies moving forward. You may recall Vertex acquired Semma and joins ViaCyte which has an encapsulated stem cells – the hope for all long-term is that no immune suppressants would be needed. https://www.biospace.com/article/vertex-s-type-1-diabetes-therapy-shows-promise-in-early-stage-trial/ XX A new eye scan that could help diagnose diabetes is moving ahead. British-based startup Occuity has received investment funding for the Occuity Indigo, a non-contact, optical glucose meter.. The company says it’s different from the failed Google contact lens… the Google version measured fluid.. but the Occuity looks within the eyeball. The company says quote - it is a transparent, stable environment whose glucose levels correlate with those of the blood. The Occuity Indigo sends a faint beam of light into the eyeball and measures the light that bounces back into the device. It can infer glucose levels in the eye based on the refraction of the returning light. XX Medtronic’s in talks to snap up what sounds like a pretty advanced patch pump from an Israeli company called Triple Jump. The Triple Jump system has a compact, fully portable, battery-operated miniature insulin pump and hand-held controller and includes all supporting accessories and sterile single-use disposables. The release here says it will be included in a future artificial pancreas system and that Medtronic plans to integrate Triple Jump's device to improve its pumping capabilities.
XX No surprise but important info – using a flash glucose moniotor can improve A1Cs and reduce DKA cases. Big study in Scotland using the Libre – called a flash monitor because this version isn’t continuous – you have to swipe to see your glucose. The technology has been free in Scotland since 2018 – so use in people with type 1 went from about 3 percent in 2017 to 46 percent in 2020. Improvement was seen across all ages, genders and socio-economic lines. Also.,regardless of prior or current pump use, completion of a diabetes education program, or early flash monitoring adoption. XX Controversial but more research into preventing type 1.. new studies showing that longer breastfeeding and later introduction to gluten may reduce the risk. This was a look at aggregate studies in Sweden.. which has the second highest incidence of type 1 in the world. (number one is Finland – I knew you were going to ask) For babies nursed for at least six to 12 months, the risk of developing type 1 went down 61 percent. Gluten at three to six months of age lowered the risk 64 percent. The studies also pointed to a protective effect of vitamin D supplementation during infancy. These researchers are careful to say that this isn’t definitive but instead points to the need for more studies of babies’ diet and vitamin intake and the risk of type 1. https://www.news-medical.net/news/20211018/Breastfeeding-and-later-introduction-to-gluten-may-have-a-protective-effect-against-type-1-diabetes.aspx XX Some early news about type 1 diabetes, pregnancy and the gut microbiome. This study shows pregnant women with type 1 had a decrease in "good" gut bacteria and an increase in 'bad' gut bacteria that promote intestinal inflammation and damage to the intestinal lining. These changes could contribute to the increased risk of pregnancy complications seen in women with type 1 This is very early on.. the next stage of the project was to identify markers that would determine which women with type 1 diabetes might benefit from safe interventions during pregnancy, including dietary changes. https://medicalxpress.com/news/2021-10-dietary-pregnancy-complications-women-diabetes.html
XX More to come, including mental health help and a bit of a correction on my part. But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—we really like their breakfast line.. although Benny rarely eats the waffles or breakfast sandwiches for breakfast.. it’s usually after school or late night. He ate like four waffles at ten o clock at night the other day. You can buy Real Good Foods online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com. Back to the news… -- We talk a lot about mental health and diabetes and how there just aren’t enough resources to help. I want to call your attention to a free virtual workshop by the Center for Diabetes and Mental Health. This is tomorrow as you watch me live – and if you’re listening or watching after I’d still urge you to check out the resources. This is from Dr. Mark Heyman who I’ve had on the show and who has his own podcast. Dr. Heyman is a diabetes psychologist and Certified Diabetes Care and Education Specialist and he lives with type 1. https://cdmh.org/ https://www.reimaginet1d.com/c/reimagine-t1d?fbclid=IwAR1dsPn5wefVM3vnypUgRuBf8OA9qL-suMKlbdPZeASRXDyFuneTAYQ3igw XX Bit of a correction to last week’s news.. I had speculated whether the Dexcom/Garmin partnership which uses the name Connect IQ had anything to do with Tandem’s Control IQ. I heard from a lot of you – apparently Garmin’s whole app system is just called Connect IQ.. and has been for years. But I did get that interview with Dexcom I mentioned.. so that will be our long-format interview episode coming up on Tuesday. That’s a chat with the chief technology officer of dexcom The episode out right now is all about Halloween – it’s an ask the d mom conversation with my wonderful friend moira mccarthy. We talk about everything from candy to getting your kids insulin pump under the costume to sugar free candy from well meaning neighbors That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon. | |||
| 24 May 2022 | "Take the Leap" - Mike Joyce is a Long Distance Hiker with T1D | 00:42:46 | |
Mike Joyce is out there – somewhere – on the Pacific Crest Trail. He set out a couple of days before this episode airs, on a 2600 mile long distance hike. It's part of his attempt to complete what’s called the Triple Crown of Hiking. He’s already done the Appalachian Trail and the Continental Divide trail. Only 535 people have completed the Triple Crown. Mike lives with type 1 and he’ll share how he went from pretty sedentary to long distance hiker and how he manages his diabetes on these incredibly long and challenging hikes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Learn more about the T1D Exchange Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 15 Sep 2020 | "I've Never Dwelled On It:" 66 Years of Living Well With Type 1 Diabetes | 00:40:30 | |
Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1. In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ---- Other episodes with amazing people living long and happy lives with T1D: Richard Vaughn was diagnosed in 1945 Judith Ball was diagnosed in 1941 ---- Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:24 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:30 This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up.
Jeanne Martin 0:45 And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney.
Stacey Simms 1:00 Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one in innovations this week why a diabetes educator says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news. I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on. And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website. Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out. All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo.
I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on.
Jeanne & Jessica 6:17 Thank you for having us. You're very welcome.
Stacey Simms 6:20 Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing?
Jeanne Martin 6:30 I'm doing great. I think I'm doing just fine.
Stacey Simms 6:35 What do you mind if I ask what technology you use how you manage anything you'd like to share?
Jeanne Martin 6:40 Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots
Stacey Simms 6:49 you can say brands, we’re all friends here.
Jeanne Martin 6:51 Yeah, I say I shoot myself
four times a day. I see my doctor every six months. Well, that's about it.
Jessica Graham 7:01 She does not use a pump or
Stacey Simms 7:04 any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time?
Jeanne Martin 7:13 Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you
Stacey Simms 8:46 really? Were you able to jump back in go to school, do all the things you wanted to do with that time?
Jeanne Martin 8:51 Yeah, I did.
Stacey Simms 8:52 Mm hmm. It seems like such a different time, right. I'm just trying to think,
Jeanne Martin 8:55 Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow.
Stacey Simms 9:25 Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you?
Jeanne Martin 9:47 Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago.
Stacey Simms 10:23 Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s.
Jeanne Martin 10:30 Right? And 1955
Stacey Simms 10:33 Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick.
Jeanne Martin 10:50 I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies,
Stacey Simms 11:30 but you're told us you were eating hot fudge sundae. So the cat is out of the bag…
Jeanne Martin 11:35 That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser.
Stacey Simms 11:48 I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no,
Jeanne Martin 11:55 I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure.
Stacey Simms 12:21 Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes?
Jessica Graham 12:38 Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow.
Stacey Simms 14:07 I want to hear your reaction Jeanne to when she said that! Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children.
Jeanne Martin 15:33 Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it.
Stacey Simms 16:02 Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes.
Jeanne Martin 16:14 Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it.
Stacey Simms 17:19 I'm sorry. I'm still on the tumor.
Jessica Graham 17:24 Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no,
Jeanne Martin 17:39 it was, I don't remember 13 hours. So it was a
Jessica Graham 17:42 ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah.
Stacey Simms 17:54 Oh, worked out. things really have changed. I mean,
Jeanne Martin 17:58 Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson.
Stacey Simms 18:07 But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh,
Jeanne Martin 18:37 I'm kind of stubborn.
And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it.
Stacey Simms 19:10 All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened?
Jessica Graham 19:36 Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose.
Stacey Simms 20:26 That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well.
Jessica Graham 20:52 Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that.
Unknown Speaker 21:17 But again, I lose
Jeanne Martin 21:19 stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good.
Stacey Simms 21:32 We don't have to use it in the show. Are you taking Tresiba?
Jeanne Martin 21:34 It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing.
Stacey Simms 21:41 But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s
Jeanne Martin 22:09 Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me
Stacey Simms 22:49 more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right
Jeanne Martin 23:00 Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great.
Jessica Graham 23:28 When did you I don't remember you ever boiling? Was that in the 60s or
Jeanne Martin 23:32 70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born.
Stacey Simms 23:43 You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume.
Jeanne Martin 24:20 Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up?
Stacey Simms 24:32 It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with?
Jessica Graham 24:44 Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But
Stacey Simms 25:43
Jeanne Martin 25:49 You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that.
Stacey Simms 26:19 Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter.
Jessica Graham 26:25 I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it.
Stacey Simms 27:24 I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it.
Jessica Graham 27:58 Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community.
Stacey Simms 29:12 Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are?
Jeanne Martin 29:17 Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way.
Stacey Simms 29:26 I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about.
Jeanne Martin 29:37 No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active.
Stacey Simms 30:27 Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that?
Jessica Graham 30:41 Um, yes. So I worry about it every day. But I don't
I try not to think about it. And I certainly have never mentioned it and
Unknown Speaker 30:49 we had
Jessica Graham 30:50 it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no
Unknown Speaker 31:14 idea. I don't
Jessica Graham 31:16 think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided
Stacey Simms 31:49 not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20?
Jeanne Martin 32:19 Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that.
Stacey Simms 33:36 Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast.
Jeanne Martin 33:45 Thank you for having us. Yes, thank you. It was nice meeting you via the computer.
Announcer 33:55 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 34:01 I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great. All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE. And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes connections.com. And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense. It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it. Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you.
Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this. Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know. Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself.
Benny 41:07 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All Wrongs avenged | |||
| 04 Mar 2021 | "Challenging and Humbling" - Raising Teens with Diabetes: Moira McCarthy (Classic Episode) | 00:33:21 | |
Raising teens with diabetes can be very difficult, but there's a lot parents can do to make it less stressful. This week's guest has advice because she's been there. Moira McCarthy is the author of Raising Teens with Diabetes and she shares how a very tough time with her daughter, Lauren, taught her what these kids really need. The secret? You might think it's better technology or a certain diet or even discipline, but as Moira explains, it's compassion. Lauren is all grown up now, with a great job and a life far from home. She and Moira have a terrific relationship and she very generously shares her story to help others. This episode originally aired in July of 2015. Book: Raising Teens with Diabetes Moira's post: Freedom is their secret drug The follow up: When your teen with type 1 becomes an adult
Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff?
Announcer 0:13 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:18 Welcome to a classic episode of Diabetes Connections as always glad to have you along, we aim to educate and inspire about type one by sharing stories of connection with a focus on people who use insulin. And with these classic episodes, I am bringing back interviews we did years ago, they are evergreen interviews that can still help people and you can really benefit from hearing these stories. But they are interviews that were done in 2015 and 2016, before the show had found all the listeners that it has now maybe that's you if you are newer, and with more than 350 episodes, you are sure to have missed a few. So this has been a fun way for me to go back and revisit some of the cool guests and great stories that we have shared. You know, it's funny to think about, but when I started the show, I was really concerned with Benny, my son becoming a quote, teen with diabetes. He was 10 when I launched in 2015. And you can hear that 10 year old voice at the end of every show when Benny reads my tagline. It is funny looking back because for us at least Middle School, you know ages 11 to 13 were actually much more difficult for diabetes stuff than the true teen years have been so far. As most of you know Ben, he was diagnosed right before he turned two. And as you'll hear in this episode, and in pretty much every episode from that first year, I'm terrified. I'm trying to figure out a way to make sure bad teen stuff doesn't happen to us and looking back it really makes me smile because what I was actually afraid of shows how much I misunderstood the teen years with type one my guest and now my dear friend Moira McCarthy has probably done more than anybody to educate me about this and she continues to do so to this day. A longtime listeners know more I became a frequent guest we even started an ask the demon segment we are due for another one of those pretty soon. If you're not familiar, Moira’s daughter Lauren was diagnosed with type one at age six. She's all grown up now living a very independent life with a great job in Washington DC and Moira , by the way lives in New England. They're not in the same town. They're hundreds of miles apart. But their path together with diabetes wasn't always smooth. Moira wrote one of the most widely read blog posts about diabetes parenting back in 2010. called freedom is their secret drug. I remember reading that boy. And just last month, she wrote a follow up to it. I will link them both up at the episode homepage at Diabetes connections.com. I am so grateful to Moira and her whole family really Lauren, their other daughter Leigh, Moira’s husband, Sean, for being open and honest about not just the good times with type one right not about the easy stuff not about when it was going well and about their community support and all the great things that they've done their accomplishments, being honest about their struggles more his interview from July of 2015 in just a moment for this is one of my first episodes. So I hope it sounds okay, I'm still doing radio stuff like introducing the guest a few times during the interview, you'll hear that but first Diabetes Connections is brought to you by insight the breakthrough a new history of science podcast, its historical wisdom, mixed with modern insight and insight. The breakthrough was created by SciMar. SciMar is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. 2021, as you know, is the 100 year anniversary of the discovery of insulin. It's arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. You can find inside the breakthrough wherever you find this podcast. And you should also know that Diabetes Connections is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Moira McCarthy, welcome to Diabetes Connections. I'm so glad you could join me.
Moira McCarthy 4:16 Oh, it's great to be here.
Stacey Simms 4:17 So much to talk about with you today. We met at a jdrf event in St. Louis last year. After which I read your book. You know, I don't have a team with diabetes
Unknown Speaker 4:28 yet.
Stacey Simms 4:29 It's kind of like looking into a time machine. And if you haven't seen raising teens with diabetes that's got the best cover. There's a teenage girl just rolling her eyes. As we've all seen. I have a teenage daughter but it's my son who has diabetes and he's 10. So more what do we have to look forward to?
Moira McCarthy 4:48 Oh, it's just a snap. You know, agers all they want to do is please their parents. So I like to say we need the walk to cure adolescent. I think the good news Is that it really is temporary. When you're in it, it feels like it's not. But it really is a passing phase. And I think that when I hear like someone like you has read the book already, it makes me really happy. Because my hope is to be proactive and help people be proactive and kind of think ahead of the challenges you're gonna face and ways that you're going to try to work through them with your teenager.
Stacey Simms 5:25 I think there are things that you can do, looking forward, to figure out maybe some things to do now when your kids are younger. But take us back and tell us a little bit if you don't mind about your story and your family's story with diabetes. How old was your daughter when she was diagnosed?
Moira McCarthy 5:41 Sure, Lauren was diagnosed right at the start of kindergarten, right around actually at her sixth birthday. I knew nothing about type 1 diabetes and children before that. Once she was diagnosed, I realized that every single sign and symptom was right in front of my face, but she diagnosed
Stacey Simms 5:59 on her birthday.
Moira McCarthy 6:01 Well, she was diagnosed at her checkup, which was just shortly and wow. Which is very common, you know, yes, people go for checkups, then. So we were I say this with all the arrogance that that shouldn't be attached to it. We were the model patient family for a very long time. Lauren was extremely willing to just do what she had to do. I threw myself into becoming educated. She was actually the first young child in Massachusetts to go on an insulin pump in 1999, which seems crazy now because everybody can. We were progressive. And I really thought that I was the smarter mom who had it all figured out. And I would hear story about parents, with their teenagers and think, Well, I'm glad that's not us. And then I realized that I hadn't raised a teenager yet. And that no matter how hard you work, and how vigilant you are, and how wonderful your child is, the teen years can be extremely challenging and humbling. And so I learned a lot about, you know, the fact that you can't necessarily outsmart all of the challenges of diabetes all the time.
Stacey Simms 7:17 And as a teenager with diabetes, let's talk a little bit about that. Because my understanding is it is not just the attitude, it is the physical as well, right?
Moira McCarthy 7:26 There's a lot going on. It's just so unfair. I mean, think back to when you were a middle school, or an early high school kid, it's just such an awkward, uncomfortable time in your life without something like diabetes on top of it. And that's not just because of social reasons. That's because of hormonal reasons, too. And so you put diabetes on top of it, and you, you know, add to it, that it can make your blood sugar go crazy because of hormones. But you don't want to do what you have to do anyway. So who knows what it is in it. It's just a big old mess. It's a It's a challenging time, I really feel strongly that one of the reasons that I really support better technology is even if all we can do is just get this better technology to kids in their teen years. We're going to make life with diabetes so much better. I now that I've watched my daughter go through it, I totally get it. And I have so much respect for all teens, no matter how much they're struggling. I really do. That's great. And
Stacey Simms 8:27 you and your daughter have been very open about your story. Do you mind if I asked you a little bit more about and I don't want to put it in terms of what went wrong. But what was difficult for her as a teenager? And how is she doing now? Oh, I
Moira McCarthy 8:38 think it's fine to say what went wrong. Um, so what went wrong is is multifold first of all, I mentioned my arrogance, I really, really, really thought that I had it all figured out and that she had it all figured out. I trusted her so much at such a young age and put so much on her that I set her up to fail if that makes sense. Um, she actually came to me once and said you shouldn't trust me so much. And I think I just laughed at her.
Stacey Simms 9:09 You'd be like just trust her to check at school or things like that
Moira McCarthy 9:12 way. Um, you know, the old you yell into the next room, what's your blood sugar and they yell back a number. So what happened with Lauren is she she actually just wrote about this for a sweet life, I believe, where she explained when it all started. And she was at the pool at our beach club and I yelled across the pool, check your blood sugar and she went to get her meter out and just went huh. And waited a minute fiddled with it and yelled, you know, 118 or whatever, she yelled, okay, and I put it into my color coded Excel spreadsheet chart. And that was the beginning of it for her. She realized that she was trying to break free of diabetes. Ironically, she was feeling worse but in a in an adolescent mind that made sense to her. And I was I was letting her because I was burnt out. And it was pretty easy to just, you know, actually literally and metaphorically be in my lounge chair, letting her run the show because I was sick of it, when what she really needed at that time was me to at least check in on her. And by that I mean see things happen from beginning to end, at least once or twice a day instead of just trusting her to go off on her own and report in to me. And that's a funny thing, because she's a trustworthy child. She's honest, she's open. She was honest about everything in her life, except her diabetes and her blood sugar's and so under my nose, under my nose, and on my guard, my daughter went into real life true, not a joke. ICU DK. Wow. And that was when even her doctors were shocked. You know, that was when I knew I had to fix me so that I could help her get through this time.
Stacey Simms 11:09 That's such a hard thing to hear knowing how on top of it, you thought you were in and she was, what happened? How did she do?
Moira McCarthy 11:17 So at first, she dove back into doing everything great, and everything was fine. And then the struggles continued. And what I realized was, I needed to find a new acceptance or a new level of what was acceptable in her diabetes care at this point in her life. Was she scared?
Stacey Simms 11:42 Was she upset? I mean, what was her reaction?
Moira McCarthy 11:44 Well, you know, she said to me, once, someone asked me years later, I'll be honest, I went through anger, I, I wanted to shake her it's really, really frustrating. When you just want your child to feel good, and and, and do what they have to do. But what do I know, I'm not the person who was inside her head as a teen. So a couple years ago, someone said to me, ask Lauren, what the best tool is I can use with my teenager with diabetes, you know, is it is it a CGM, and I should watch everything? Is it a pump? Is it a meter? What is it? So we're driving the car and I asked her, and she thought about it for a while. And she said, I've got it, mom, I know what it is. It's compassion. And I'm like, but she said, you know, that whole time, I was beating myself up more than anyone could ever possibly beat me up. I felt like a failure. I couldn't face that I wasn't doing the right thing. I was letting myself down. I was worried about my health. So pointing any of that up to me was pointless. I already was doing that at a level you could never do. And so that really spoke to me about that makes you think about the struggles teens have that all that was going on in her head. I don't know how she was, you know, she was through all this. She was her student body president. She was homecoming court. She was star, the tennis team with all that going on physically and emotionally. It's pretty remarkable.
Stacey Simms 13:21 And this is a, I guess I can say a bit of an overachieving family. She's now she's now in a good way. And she is now a college graduate has a great job doing very well. How did you get from DK a to that?
Moira McCarthy 13:36 It was a process. I think that I had to realize and parents listening to this whose children are younger, I can't stress enough how you have to start doing this earlier is you have got to stop nagging them. Because when our voices fill their heads, there's no room for their own rational voice. And so it took me a really long time to stop nagging her and in fact, this morning, I kind of sort of wanted to nag her from 500 miles away to hurt work, but you just can't. And what happens when you stop that nagging is their own internal nag kicks in and they will listen to their own internal nag more than they will listen to ours. So I had to let go a little bit. But on the converse, I also had to make sure she was safe. But I had to have a new definition of safe while we went through this time. safe for us was not an A one C of 6.5 safe for us was not a log sheet with tons of checks in it every day safe for us was not now it would be the straight line across the CGM safe was knowing that she was never going to go into DK And all I had to do to make sure of that. And this will be confusing for parents of younger children, because they haven't experienced freedom in teens yet, all I had to do was check in and see her, do a blood check and put insulin into her body, at least one time a day. And if that's all you can manage for a period of time, they're going to be safe. And then you can work through the other things. And what worked for Lauren, she moved to a new endocrinologist, I loved our old endocrinology team, but she made a change. And her new under chronologist is very intuitive. And he treated her as a human being and not labs while working on the labs, if that makes sense. And he was the one who really cut back on what his expectations of her were. And by cutting back on the expectations, she was able to experience success and stop beating herself up as much. And then do more. Does that make sense?
Stacey Simms 16:04 It makes perfect sense. And another piece of advice that I've tried to incorporate that I've heard you talk about is when your child comes home from school, and again, my son is 10. You know, we all want to say first, hey, how was your day? What's your blood sugar? Or, you know, how was your day? What do you do for lunch? And how did you bolus? And I have tried,
Moira McCarthy 16:20 I don't really succeed,
Stacey Simms 16:21 I have tried to stop doing that and say, how was your day? What were your friends like, and then either later on, ask them about it or say, hey, just give me your meter. And then you know, and we don't talk about it as much as we used to, I find that to be pretty helpful.
Moira McCarthy 16:35 It really is I just got off the phone with a mom who reached out to me and asked if she could talk to me on the phone because she has a struggling teen, and she has an older child with diabetes. And she said that that action actually damaged their relationship to the point that she's still trying to rebuild it
Stacey Simms 16:54 by just simply asking about it all the time.
Moira McCarthy 16:56 All the time, the minute he walked in the door after school, it's such a natural thing for us to do as parents, but and I found when I first started working my way past that I was faking it. And that was obvious to my daughter because she said, you know, Mom, I know that you're asking exactly three questions about other things and just counting them until you ask about diabetes. So the answer is, and this sounds wacky, don't ask and what you said in there makes sense. You can look at their meter and get your answers, you know, and then whatever those answers are, you move on from there, don't go backwards, you know, so. But it's really hard because we care so much about this. And I think a way to try to work around it. And I talked about this in the team book is to remember that we're not raising an agency or a blood sugar, we're raising a human being. And their diabetes seems really important to us because it's such a responsibility medically and every other way. But the rest of who they are is just as important for us to nurture too. And if you can try to remember that it can help you pull that in. But it's what parent doesn't have that problem, you know, wanting to say what was your blood sugar. It's just what we do. So
Stacey Simms 18:20 one of the things that you and I have talked about before is this remarkable advancement that's happened in technology. I my son has used a CGM for the last year and a half. He's had a pump since he was two and a half. But using a CGM has really changed the way I look at his blood sugar. And the way it appears throughout the day, and you mentioned a concert I want to talk about is the success is success, a flat line on the Dexcom. And that is something that I have to steal myself against going for because we all want to see those super steady, wonderful numbers. But that's just not how diabetes operates, at least not my kid. And he still does very well. Can you speak a little bit to this, I don't want to call it an obsession, but this it's almost this fear of letting kids kind of go in and out of range. Because at any moment, something terrible could happen when that's really not the case.
Moira McCarthy 19:14 Yeah, so first of all, I want to premise that with if my daughter was newly diagnosed, and I was using these tools, I would absolutely fall into the category of wanting a straight line and worrying every time she went up and down. So I totally get it. Even though I started out this journey in a different time. And before those things, I can totally see how it could happen. But I have this wish and I just said it. I was lucky enough a week or two ago to be at a meeting with all kinds of the CEOs of all the technical diabetes technology companies. I was one of the only patient people you know, I'm a patient parent in the room. And what I said to them is we're developing these amazing tools to solve See more. But we're way behind on tools, ie faster insulins, better infusion sites, things to make things work better on treatment of them. And so parents particularly, and I would think newly diagnosed adult patients, too, are trapped in this period of time now, where they have, they can see everything, but they can't do anything about it. And they think they need to do something about it. So Lauren was diagnosed back in the days of mph and regular when you had a chart of spikes and dips, and you match those throughout the day. In other words, we knew there were going to be three mph spikes and two regular spikes, and then dips along and we matched them. So that helps you understand the ebbs and flows of blood sugars in a person. And I think that parents now who are going right on CGM, with their children are so afraid when that arrow goes up, and when an arrow goes down, that they never fully experienced those ebbs and flows. And the thing about that is, Jeff Hitchcock said it beautifully, we can raise a child with a perfect agency forever, all we have to do is lay them in a hospital bed with an IV of glucose in one arm and an IV of insulin the other arm and check them every 15 minutes and tweak it. But that's not a life. That's not a life. So I look at my daughter, and I look at what she's doing and how she's living in our life. And I look at her success, and she loves her career, and she's in her apartment in Washington, DC and she has a million friends. Well, if I match that with her line across the CGM for the past 18 years, if you only looked at that CGM line, you might be like, Oh, my God, this has been a nightmare. But if you look at her, and frankly, she's perfectly healthy, and everything's fine. I like that side of it. So as far as the fear goes, this breaks my heart. I like to call fear. Now, the newest, most frequent and most frightening and devastating complication there is in type 1 diabetes today. And I think that it is partially because the way we all communicate and are linked with one another, and you see things and hear things like you never did before. And frankly, you don't know the whole story behind everything you're hearing. And also, these tools that are making people think that you know, because your child's blood sugar is going down, if you hadn't done something, they were going to die. And I really, really, really am struggling to help find a way to change that. Because we parents have an obligation to our children to help them live a life that they embrace without fear, diabetes or not. And no matter how many times you say you're not passing that fear on to your child, you're passing that fear on to your child. So it would be nice to change it.
Stacey Simms 23:09 My mother always said that kids take their cues from us. So what we do and what we feel, we may not think we're modeling, but they're getting it, they're picking up on it. Yeah.
Moira McCarthy 23:18 And a lot of it is in language. Like, I don't think you should say, I saved my child's life again last night. Giving your child glucose is not saving their life, any more than feeding them dinner every night and saving their life because they would starve to death. It's a little more urgent. And, and, and yes, it's scary, but lows are lows and you treat them and you move on. And it's all going to be okay. And the same with highs, you know, even my daughter and the decay, thank goodness, she got to a point where she was so sick, actually, her friends intervened and said, you're going to tell your mother what's going on right now. And we're bringing you to tell her and we went right to the hospital. But there are ways to fix things and it's better. I think it's better to have your language just be okay. It's a high, it's a low. It's not good. It's not bad. It is what it is. And that way you're not passing that on to your kids. I camps have a huge problem now that they never had before that children go into diabetes camp are petrified to go to sleep at night because their parents aren't there. That didn't happen before. Wow. Yeah.
Stacey Simms 24:38 My guest is Moira McCarthy, author, travel writer, speaker, diabetes mom as well. I want to talk to you about the jdrf ride to cure diabetes because my friend, I think you're crazy. You went through Death Valley on this thing. What possessed you? Why do people do this? How far is it?
Moira McCarthy 24:58 105 miles My friend, and not a motorcycle. And it's funny because I actually said the words out loud at jdrf national meetings, you will never get me on a bike and I will never do that ride. But I did. And the reason that I did for me, we were a big walk family, we had a big walk team like you do. We loved walk every year, we were one of the highest fundraising families in the country. And when Lauren went away to college that dissipated, which is quite normal, the culture of walk is getting people together and families and stuff and when your kids go off to college, people move on from that. And so that first year, I felt, I felt a responsibility that all this money that was coming into jdrf wasn't coming in, and that some researcher somewhere wasn't going to be able to do what they needed to do. And I had to find a way. So I thought, well, I'll try this ride thing. So I bought a bike, I hadn't owned a bike in 25 years, I had no idea how much bikes cost, Holy moly. But I started training. And I put the word out and I thought, Oh my gosh, I hope I make the minimum I chose the gold minimum, which would be $4,000 raised and I held my breath and cross my fingers and had a little faith and put the word out to my friends. And not only did I do the ride, but I raised $40,000 my first year. Wow. So what that said to me was a I guess I should have done the ride. My friends probably felt just as guilty about not having a way to support our dream, too. And see, taking that kind of action that requires tons of training and tons of work and tons of effort, on my behalf showed my friends that I respected their donations, and that I understood that after all these years, it was amazing that they would do something so I needed to do something possibly amazing for them. What is it like?
Really, really, really
good experience?
Stacey Simms 27:12 What was it like, though on the bike? I mean, it's just hard. It's not that's not an easy thing. You know, you have to train for a long time. You can't just jump on the bike and pedal away. No,
Moira McCarthy 27:19 the first time I rode, I wrote about seven miles. And I got back and I called my friend Katie Clark, who got me to ride and I'm like, I think I have allergies. And she said, Yeah, you're allergic to cycling more. Love I was and now I can tell you. It's really wonderful. You still have to train and build up. But if someone said to me on any day, do you want to go on a 50 mile bike ride? I could say Sure, sure. And I'm not like an Olympian. You know, I'm, I'm just an average person. And I found that I love being on a bike. So I got something out of it for myself, you know, you don't wear music in your ears when you cycle because it's not safe. And even though if you're with people, you're still in your own space. So it's very meditative. I can think through things. I see the world in a different way. Even my town I cycle by things that I drive by every day, and I'm like, Oh my gosh, that's really pretty. You know, I never noticed that little paths. So I feel like it's been a real gift that said ride day. You have a lot of adrenaline. It's really special because you're riding with all people who care about the same thing you care about. When I get done, the last thing I want to do is ever get on a bike again. But I do maybe not the next day, but
Stacey Simms 28:42 Wednesday, when is this ride?
Moira McCarthy 28:45 I'm doing to this year, August 13 through three states through the Midwest, Wisconsin, Minnesota and Iowa and then Death Valley is October something teen whatever that Saturday is, so I'm doing too.
Stacey Simms 28:59 Yep. Well, hats off to you. That's, you know, maybe I'm the person who will say now you'll never see me on a ride. And then Mike, he'll go to college.
Unknown Speaker 29:07 I'm gonna remind you, Oh,
Stacey Simms 29:10 I love it more. Thank you so much for talking to me today. And again, the book is raising teens with diabetes. And she is you can find more publications, but more writes for many publications. And we'll have links you can find out more and where to catch your columns more. Thanks so much for joining me. Absolutely. Thanks
Moira McCarthy 29:30 for what you do.
Announcer 29:36 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 29:42 More information about more of the blog posts I mentioned, you know the one from 2010. And the follow up that was just published last month on health line. I'll put those both at the episode homepage which also has the transcription and it's interesting to me listening back because I don't feel that the teen years quote. You know, our Behind us by any stretch of the imagination, Benny is 16. He just started driving and there's new challenges and with diabetes and kids, you're facing new challenges every year anyway. So I'm still listening to Moira and calling her up and asking her my questions. But it is remarkable to look back and think how scared I was when what I really needed to be thinking about was less about me, and how can I make this right for Benny? And how can I make sure he doesn't rebel? And you know, and does what he's supposed to do? And instead, look at it through the lens of how can I support him? How can I give him more empathy? How can I give him more compassion? How can I talk to him about the tools that he needs? And it sounds very woowoo Brady Bunch, whatever you want to call it. But I can tell you having these conversations with Benny over the years, even many conversations where he rolls his eyes and doesn't want to talk about it. I mean, he's not he's far from a perfect diabetic is far from a perfect kid. But I feel like all the time I talked to him and told him, you know, we're here for you. It's your decision, we'll support you. It's not about a perfect agency. It's not about this. It's not about that. He listened. He heard us. It's absolutely amazing. And I'll say one more thing about teenagers with type one. I think sometimes it is a bit easier if you're a younger child is the one with diabetes. There's not some weird genetic thing going on there. It's just that once you see and I'll give my example here I have a daughter who is three years older than Benny, but four years older in school, because the way they their birthdays ran, when she entered her teen years, I had this wonderful, nice, rule abiding kid who started forgetting in quotes, forgetting to do homework, slamming doors, yelling at us being unhappy, changing her clothes, changing her hairstyle, doing all the things that normal teens do. But when you're first kid, your older kid is the one with type one, and you're entering those teen years, and you're seeing all those changes. I have a dear friend and this is her situation, the older kid is the one with type one. You don't know if it's diabetes, or teen nonsense, because you haven't been through it before. And I think it's really helpful to understand that the transformation is kind of a strong word. But the wackiness that happens in the teen years isn't all about diabetes. And that helped me an awful lot, because sometimes it's just nonsense. Moira is definitely the authority on this, we are still feeling our way through the remaining teen years, maybe I'll write a world's worst teen mom in 10 years from now, when I'm looking back, I can tell you everything we did do wrong during this time. But there's lots of good stuff coming up on Diabetes Connections. We're gonna be sharing stories about mutual aid diabetes, have you seen this on social media? Who are these people? What are they trying to do? How can we help? How can we trust that the money that we're using to help in the community is going where it's supposed to go without a big organization behind it? These are some really interesting people. And we're going to talk about the City of Hope. This is a big research facility. They do a lot more than diabetes, but they have some very interesting studies. They talked about their reverse vaccine a couple of weeks ago, and they're going to jump on and give us an update. Thank you, as always to my editor john Kenneth from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.
Benny 33:14 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 01 Aug 2019 | Researching T1D Prevention - Full Interview with TrialNet's Dr. Michael Haller (Bonus Episode) | 00:43:46 | |
[vc_row][vc_column][vc_column_text][/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]For the first time, researchers have managed to delay the onset of type 1 diabetes. In a breakthrough study, TrialNet was able to delay the onset by two years. Join the Diabetes Connections Facebook Group! Stacey talks to Dr. Michael Haller in-depth about this and other studies. An excerpt of this interview ran in our previous episode. In this episode you'll learn more about how TrialNet works, other promising studies and why it's so difficult to prevent an auto-immune disease. Plus, an update on the funding for TrialNet and why they've changed how they re-screen families and individuals. Sign up for our newsletter here Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below
Stacey Simms Dr. Haller. Thanks so much for joining me, exciting times. I'm really excited to talk to you today.
Dr. Michael Haller My pleasure to be here.
Stacey Simms Before we get into the prevention studies that came out and other things that are going on, let's really kind of dial back and start at the beginning. Can you tell me a little bit about what TrialNet is and what you're trying to do?
Dr. Michael Haller Sure. TrialNet is an NIH funded consortium of the top type 1 diabetes centers across the US and Canada and even Europe and Australia. And our goal is to try and develop therapies to ultimately prevent and reverse diabetes. And to achieve that goal, we have to identify patients who are either newly diagnosed with type 1 so we can encourage them to participate in research studies, trying new drugs to see if we can protect the remaining beta cells extend their honeymoon phase and hopefully eventually get to reverse their disease. And then the bigger chunk of what that does is actually tries to identify folks who are at high risk for developing type 1 diabetes by screening family members of people who are already affected with type 1 to see they have markers of autoimmunity, and then either follow them to see if they progress to being higher risk, or put them in prevention trials aimed at trying to delay their disease. That’s really the main emphasis of TrialNet that it's a huge operation. As you can imagine, trying to identify people who are at risk for type one is not easy, because people don't walk around with a name tag on that says, “Hi, my name is Mike, I'm at risk for type one.” We have to draw the blood and identify markers in their blood and we have to talk people through why they would want to do that. So it's an exciting time for all those efforts. But it's certainly a big challenge. I'm going to skip around here a little bit. So forgive me if, as you listen, this sounds out of order, but I have to jump ahead because the news came really recently that we had the first study to show that any drug can delay type 1 diabetes, the diagnosis. Can you talk to us about this?
It's called teplizumab. It's a mouthful. Teplizumab is a monoclonal antibody designed to track the parts of the immune system to knock out or kill cells that have a marker on them called CD three. And CD three is sort of like a name tag for these kinds of cells that are going out and attacking the pancreas. Now, unfortunately, it's not so specific that it only attacks those cells that might be targeted at the pancreas. You know, there's some collateral damage that it gets rid of other cells that are part of the immune system, but that's the big challenge in in type one is trying to find drugs that can get rid of the silos that we want to get rid of and not and not the ones we want to keep. But the results of this study are really, truly exciting and paradigm shifting for the field. As you mentioned, this is the first time in the history of type one that we've been able to show that anything can really durably delay or prevent the disease from progressing. So what that study did was take patients like I mentioned, who are high risk for developing type one, so family members of somebody who has type one who had markers in their bloodstream that told us they were going to progress to clinical disease where they need to take insulin in the next several years. And they were treated with this, this drugs immunomodulatory drug teplizumab. And what the data have now shown, the paper was recently published in the New England Journal of Medicine, was that in fact, the drug did delay onset of type one, which means there was actual prevention and some of the patients on average for at least two years, and so while it's certainly not a home run, we can't guarantee that we're preventing the disease forever and the patients who received the active drug versus who received the placebo agent. It's a huge win for the field of type one, it establishes the proof of concept that we really can effectively change the natural history of the disease. And I hope that it accelerates our efforts to do more and more studies with other drugs like teplizumab and adding additional agents to try to get an even better effect for our patients so that we can ultimately say, hey, it makes sense to screen everybody for their risk for type one, sort of a public health initiative and treat them with these drugs to prevent them from getting the disease.
Something I've always wondered. And I don't know if you can answer this. Why is it so difficult to prevent or treat autoimmune conditions? It's not just type one, right? I mean, nobody's cured or really prevented an autoimmune disease, have they?
Dr. Michael Haller Yeah, it is a challenging beast. You know, the immune system is really smart, even when it's confused about what supposed to do. And so once the immune system has decided it wants to attack cells tissues, which is what we mean by auto immune disease, and then type one, we just are specifically looking at the immune system attacking beta cells. It figures out all kinds of different pathways to get to that end, and cleverly changes the way it does it. And so it’s probably not surprising that it's been so challenging, just given the way autoimmune diseases in general come about and specifically help type one happens. And in the type one space, we're further challenged by the fact, and so it's a good challenge in the sense that we've gotten better, better caring for diabetes. So you know, people reasonably would say, I don't want to take a therapy that's a risky agent or drug to prevent or reverse the disease because I can potentially take care of diabetes with insulin and pumps and continuous glucose monitors. Now, I don't live with diabetes personally, but you know, I have a personal connection to it. My grandfather had type one and I take care of patients every day. And while I understand that argument, but the majority of my patients I talked to say and I had currently understand that living with type one is incredibly challenging and hard and, and more patients than not are actually willing to accept a little bit of risk for the potential benefit of delaying that disease. And certainly a two year delay for most families who've now lived through this is would be tremendous. And most folks who have gone through that would say, “Man, if I could have just gotten my kid from six to eight, or eight to 10, or 10, to 12, or any amount of time, Some even say a day would be worth it.” That'd be totally fine.
Stacey Simms Personally, my son was diagnosed right before he turned two. And I got to tell you from almost two to almost four, I take that in a heartbeat because he could not even say diabetes when he was diagnosed. Yeah, I mean, the communication was not there. I mean, it's unbelievable at that tiny little age to get them to tell you what's going on. But let me ask you about the people in the study. Do you mind sharing a little bit about but how does it work? My hat is off to anybody who takes part in any kind of clinical trial, whether it's technology or drugs or medications, these, these are pioneers and people who are sacrificing even if they may say otherwise. You know, they're taking time, they're taking risks. So my hat is way off. But can you tell us a little bit about what kind of goes on during something like this?
Dr. Michael Haller Sure. And thank you for bringing it up yet to patients who participate in these studies are absolutely the diabetes heroes. Sadly, not enough patients are able to participate in studies just because of the time commitments and logistics and maybe being risk averse like you mentioned. So if you know somebody who participated in a study, please give them a hug and a high five and a hearty thank you. Because without those folks, we can't find these things that might work and move the field forward.
Stacey Simms Let’s start with the study. Say I'm a mom, I've got a six year old or whatever the age of the person is here. I don't know how much detail you can share or what might be interesting, but I've never participated in something like this. So I show up at TrialNet. Then what do I do?
Dr. Michael Haller The trial starts with a screening study. We just draw some blood from somebody who's got a first degree relative or a secondary relative with Type 1 diabetes. And if the markers in their blood show they have the antibodies that we associate with risk for type one, then we asked them to come back for additional testing. And the frequency of that testing is dependent on what we learn about their risk from the next set of tests. And so for patients who are particularly high risk, which is the kind of patient who was enrolled in the lab study, if they were old enough to be in the study, and they had the right risk markers, which included completing an oral glucose tolerance test that was already abnormal, but not quite at the diabetes diagnostic level. So these were patients who are really unfortunately, high risk really on the verge of getting diabetes within the next few years. They were offered the opportunity to participate in this trial. And when you when you mentioned that it's a big commitment, teplizumab is not an easy drug to receive. It required a 14 day infusion of the drug as an IV. So every single day for two weeks, patients had to come in and get poked and get an infusion which was technically a half hour infusion. But by the time you come and get your IV placed and get the drug and follow up, we're talking about several hours every day for two weeks. So huge commitment. But nevertheless, if I told you that those two weeks was going to buy you a two year window or potentially longer of diabetes free time, I don't know many patients or families that wouldn't say sign me up. I think it is a paradigm shifting thing. We just, we hadn't had something that did this before. And now that we do, I hope that it will encourage more and more families to participate in the research process to sign up for screening to hopefully find other therapies like teplizumab to find out how we can improve on teplizumab’s findings and so that we can ultimately tell patients one day that you know, we're screening your kid, not just for research, but because we know we can do something about it.
Stacey Simms What's next for teplizumab. Is this study kind of done? Do you now start something new to see if you can prevent it longer? What happens next?
Dr. Michael Haller Yeah, a little bit of both. We obviously met the study’s primary endpoint and published those data. But now there are lots of questions to ask and answer, which is how long does it benefit last and those who got treated? And what happens if we retreat? Some of those patients who got drug appear to be responders and still haven't developed type one? Can we extend the benefit even longer if we give them another course of the drug? And so TrialNet is actively looking at those options right now. I think one of the challenges for teplizumab and specifically is it's a, not an FDA approved drug for anything at this point. It's still been even though had a long history of being developed for this purpose and being tested in the type one space multiple times in new onsets and now in this prevention space, it's never been licensed. So despite the excitement about it, you can't just go out and get this today from your endocrinologist or anybody else. The only way to get it would be through a study so the company that owns it is trying to do new and additional studies both in newly diagnosed patients. In fact, they just opened up a study. That's not part of trial that but it's by the company, and then TrialNet is going to be doing some version of the either a retreatment study for treatment with teplizumab plus other agents is likely to come down the road because we all still believe given to early question about the complexity of autoimmunity, that we're going to have to do more than just a single drug to kind of get us over the end zone, we're probably going to require combination therapies or what we call induction and maintenance therapy. So first treating with teplizumab and then some other drug to keep the effect going. Stacey Simms Another recently completed study, my understanding is, ATG-GCSF, can you talk us through a little bit of what that one is?
Dr. Michael Haller Sure. So the study of thymoglobulin (ATG) and GCSF which stands for granulocyte colony stimulating factor – I apologize for all the letters and names - has been a labor of love and a passion of mine personally for the last decade or so. The work that came out of that really is a beautiful example of the importance of translational science that came out of my institution of the University of Florida. The story is really interesting. There was a transplant immunologist, who was using fairly aggressive what’s called non- myeloablative transplant approaches for people with really severe bad autoimmune diseases like end stage rheumatoid arthritis and multiple sclerosis. And he was having really impressive outcomes. But his approach was really quite aggressive. It would be akin to almost doing chemo therapeutic treatment for these patients. And so he started to talk about the potential of using that approach in type 1 diabetes. And honestly, the US type one community just wasn't willing to think about that because the risk level was was so much higher and we hadn't really had any successes yet. So we ultimately took that approach to a group in Brazil and and did new Patients with this approach to their and today is still probably the most potent way to provide a short term reversal of Type 1 diabetes that we've seen in newly diagnosed patients. And so our group was really interested in that. But before we really have to dissect this, take it apart, deconstruct it and try to put it back together in a way that would make sense for treating kids and a US audience because of the risk there was just too high. And so we went from the bedside, essentially back to the bench and we started doing animal studies in the mouse model type one, and found that two of the drugs that they use in this sort of very complicated approach really gave us the most bang for a buck and those two drugs were ATG and GCSF. And so once we had demonstrated that repeatedly in the animals, we decided we would do a pilot study in humans. And the first thing we did was actually study this and folks who had what we call established type 1 diabetes, people who had diabetes for at least four months, but as long as two years because that population often largely has been ignored in the timeline. intervention space, even though we now know that many of those patients have lots of beta cell function still around. And what we were able to show was that the combination provided for almost a 40% preservation of their ability to make beta cells and start to make insulin alpha two years after a two day treatment of a anti thymocyte globulin and a 12 week course of the GCs F. So that was really exciting. But we wanted to then continue to move it sort of earlier in the disease process to new onset and ultimately, into the prevention space. So at that point, we convinced the TrialNet and the NIH to fund a large confirmatory study, similar to this episode we just talked about, but a new onsets to see if the low dose of ATG with or without the GCSF, could provide protection for beta cell function and improve A1C. And we've now published one year and more recently, two year data. And in fact, we we didn't show that so the most interesting finding was perhaps that the the low dose of ATG by itself was able to provide for the most robust preservation of beta cell function and reduction of hemoglobin agency and newly diagnosed patients. Why I'm really excited about this approach is it sort of related to what we just talked about before with teplizumab in that entire time aside, globulin is been around for 25 years. It's a commonly used medicine in hospitals every day. It's primarily used for pre treatment of folks getting kidney transplants, but in that indication, they use it at a 10 times higher dose. So we're using it as a very minimal dose of this drug. And we still need to do more studies to confirm our observations, but the pathway to taking it into the clinical care of patients is perhaps a little bit more direct, because it's been around and already has a label. Now, of course, we'd have to do additional studies to get a label for the type one space. And you know, that's being considered right now, but, but I'm excited about the opportunity to continue to study ATG, I think it's very similar to pull them out in many ways. It has some advantages and that only requires a two day infusion. Instead of a 14 day one. And so the next step is for trial maps to start a prevention study and that study is being planned as we speak. That would be very similar to the teplizumab study that we talked about taking high risk patients, giving them a low dose of HCG. And following them to see, in fact, that can prevent them from progressing to clinical diabetes where they need insulin.
Stacey Simms So exciting. And you mentioned people with type one who are not newly diagnosed. Let's just talk about that for a moment. Because I agree, I think there's a feeling that well, these prevention studies are fabulous. And you know, one day, we'll make sure that, you know, no one develops type one, but what about the people who do have it? Were you surprised? Or I guess I should ask you put that in perspective for us that discovery that they're still producing beta cells that something can still be done here.
Dr. Michael Haller Yeah, a lot of people don't realize that. But I think one of the best ways to think about it was analogy that previous director of the JDRF made, which was, if you think about an hour of the clock as being the amount of time somebody lives with Type 1 diabetes, the new onset phase, which is the first hundred days, where we've normally done these studies, is like less than a minute. And so we ignore the whole rest of the population who live with type one, many of whom fund our research through, you know, being donors or advocates, we sort of leave them out of the opportunity to participate. So one that's wrong morally and two it's wrong, because we now have better science that demonstrates that people with type one, especially those who were diagnosed a little older, unfortunately, not kids, like your son who were diagnosed so young. But people who are diagnosed as teens or even young adults, often have functional data cell mass for years, even five to 10 years is not uncommon, and it's quite variable, but we can measure that and know and those patients are potentially huge population who might benefit from some of these immunotherapies that we're talking about. So I think you're starting to see the pharmaceutical companies And the scientists who work with these drugs, designed trials to sort of re-infranchise that population that's long been left out. So we felt that that was very exciting and important finding from our study, our first study of ATG and GCSF. And now we are seeing other studies like it coming along.
Stacey Simms Alright, so let's just go backwards for a moment and talk about people diagnosed very young, like my son who was diagnosed at 23 months. I hate to hear something like that. But I have to ask, Can you elaborate on what you meant by that? Nature has no real cut offs, but you know, what, what ages are you talking about there?
Dr. Michael Haller Yeah, so unfortunately, kids who are diagnosed under four to five years of age tend to have a more rapid and severe disease in that their beta cell mass is, is less when they're diagnosed, and they just may retain less over a shorter period of time. And it's a little bit obvious that you know, somebody who made it to 30 or 40 or 50 years of age before they developed type one, obviously had a slower progression of disease. So in some sense, it's not too surprising that their progression after the day they need insulin is going to be slower than in somebody who unfortunately, developed type one at 23 months. But as you can imagine, it's incredibly variable. It's one of the challenges of type one, there's so many flavors of type ones. And every individual patient is different, you know, I haven't done this now for 20 years, I still every time I walk into a patient's room, you know, their diabetes is different than the patient I saw before and will be different the patient I see next. And that's probably true for some of the biology of what's going on with the immune attack. And so it's probably not a one size fits all, won't be a one size fits all approach. And we have to get better at personalized medicine. So know what wait what may work as a therapy to prevent diabetes in a 10 or 15 year old, or even a 30 or 40 year old is going to be different ultimately, then what will likely work for somebody who's you know, a year or two old and really high risk.
Stacey Simms It's really interesting. I mean, I as a mom, you know, I just pointed I don't want to hear things like that. But for the purpose of the interview here the information, it's really interesting and it kind of explains Benny my son had basically no honeymoon once he was diagnosed and we were very fortunate he wasn't in DKA It was not an emergency situation that day, but boom that was it. We never looking back we never had a honeymoon period.
Dr. Michael Haller Yeah, that’s a pretty common experience. Unfortunately for kids diagnosed that young. They just, you know, they just trashed their beta cell mass so quickly that they don't get a honeymoon. Yeah.
Stacey Simms That's a great way to put it. My son will be thrilled to know that he totally leveled it.
Dr. Michael Haller He killed it. He knocked it out of the park, not the game you want to win unfortunately, but you mentioned something else. So that's really a key factor which is that he fortunately didn't develop DKA but still even in the US 30 to 40% of new onsets come in in DKA And sadly, that number continues to go up, not down. It's another really critical reason to do screening programs. You know, while we can't yet justified general global screening For the purposes of preventing DKA, people who have a family history of type one certainly should get screened in TrialNet and be followed because we know, very good data that folks who are followed in these studies have a marked reduction in the likelihood of DKA for a subsequent family member who unfortunately, might be developing type one. And so while you know, economically, it doesn't make sense, you know, obviously, no parent who's gone through this would say that they wouldn't do something to prevent DKA and another child who might have to deal with it. And we're talking about a reduction from, you know, 30 to 40%, which we're seeing in the general community down to the 5% or less. So that's a huge secondary benefit of participating in these trials.
Stacey Simms You know, one thing that has come up recently, though, unfortunately, and as you say, you want to do more screening, but TrialNet seems to have had the funding cut back. Can you talk a little bit about the changes that have come? Because I did get when I told people we were going to be talking about prevention, and I was speaking to TrialNet I heard from a few people who said ask them how long the changes are going to go on.
Dr. Michael Haller I appreciate you asking that question. And for all your listeners, we appreciate your ongoing advocacy Keep, keep speaking up being loud about the value you find in these programs and talk to, you know, your congressmen and senators. Ultimately, that's where the money comes from town that is funded by the National Institutes of Health. And we get a bit of a special allocation of my own money called this special diabetes project. SDP monies, unfortunately, looks like it's going to move forward with some some newer funding. But yes, we did recently face some budgetary cuts because of decisions that had to be made at the at the NIH level. And because of that, we had to strategically talk about how much screening we could do to still identify the highest risk patients that we need to put in these prevention trials. And part of that calculus resulted in us having to cut back on the frequency with which we had previously been doing repeat screenings, but I completely agree with all the you know, upset families out there part of that huge value of being part of our family was Being able to come back in for rescreening every year. And either knowing that your kid wasn't that increased risk this year, or finding out that unfortunately, they were but knowing that, therefore, that that meant you would get a closer follow up and intentionally be in a prevention trial. So I remain hopeful that that decision will be overturned, to be short lived. But at the end of the day, it's a purely economic one. And so, if any of your listeners have influence or everybody can, you know, don't be shy about giving that feedback to your TrialNet center if you're already in TrialNet or talking to your legislators about why you think this is important.
Stacey Simms We have international listeners as because TrialNet is not just in the US are these are these funding issues in like the UK as well?
Dr. Michael Haller Thanks for bringing that up too. So TrialNet it is mostly funded by the NIH but we also get some funding in kind from the JDRF and the direct funding has largely been used in the past. To help us maintain the international centers. And so, you know, they as a group, given that we use the funding all the same, are affected in the same way as it relates to this current screening change, because we can't have a different program in different countries. But again, hopefully as funds will come back to the network, we will be having the ability to increase our screening programs. And I should say, some of the screening things need to be changed anyway, because the network is evolving, and we're learning more and we have better more precise ways of doing things. But you know, some of some of the changes that were made were, were certainly a little bit more draconian than we had hoped.
Stacey Simms Let's talk if we could about some other prevention theories. As you can imagine, with the podcast, I get a lot of interesting guest pitches and emails. And when I'm very careful, you know, I have a no snake oil policy, and we try to do a lot of research before we let things through. But one of the things that comes up time and time again, our stories about people who are diagnosed with Type 1 diabetes, but prevent the onset or extend the honeymoon by diet. Is that possible?
Dr. Michael Haller The short answer is, it doesn't appear that that's possible. We don't have any evidence that supports that assertion. The longer answer is certainly if you, you know, restrict carbohydrates, which obviously was the way we treated diabetes before we had insulin, you essentially went on a starvation diet, and that will no doubt reduce the severity of the hyperglycemia. But it doesn't ultimately change the beta self destructive process. And unfortunately, before insulin was discovered, you know, this was a uniformly fatal diagnosis. So there are a lot of people who are very interested in excited by using diet as part of the therapy for type one and I absolutely agree that is an important part of what we do eat everything has a huge effect on glycemic load. But diet and of itself is unlikely to be able to change the immunology and the natural history of the beta cell loss. And there really isn't any data to support that of yet.
Stacey Simms Anything else with prevention. I mean, Verapamil is not a prevention drug, right? It's not with those trials, or is it?
Dr. Michael Haller It hasn't gone into prevention trials yet. But sure, there's tons of things on the list that we'd like to continue to try out. And honestly, the main limitation, to do all those things is an adequate number of people identified and willing to participate in the studies in a trial that screens 20 to 25,000 people a year, but when even if you're screening, first degree relatives, only one in 20 are going to have antibodies. And so you know, as opposed to one in 300 in the general population who are at risk for type one, so it takes a lot of work to identify a high risk patient and then, you know, they may not want to participate in the study again, The particular agent’s risk profile or the logistics or any number of reasons. So again, we really need people to participate in screening because we have lots of drugs that we'd like to try. Verapamil is a very interesting drug that is an old blood pressure medication. And a recent publication demonstrated it may have the capacity to preserve beta cell function as well in new onsets .It's a relatively small trial in adults that needs to be repeated in children and adults. And then if those results are confirmed, it would absolutely make a lot of sense to us in prevention or combined with another agent. So again, we talked about, you know, maybe teplizumab plus other drugs or ATG plus other drugs, Verapamil would certainly be on the list, but I should mention that TrialNet is already planning additional prevention studies as well. So we have we have an an open trial that's a mechanistic based study. So it's really not designed to answer the question of whether or not a drug this particular drug can prevent disease, but it's designed to give us some scientific answers to questions that if they look good would would lead to a larger trial. And that's using actually an old, more anti malarial drug called hydroxychloroquine. And then there's another drug that's being evaluated for a trial as well. That's a really interesting story. It's called methyldopa. Methyldopa is a really old blood pressure medication, and through some really beautiful science. And that drug was found to bind to a particular area that really is critical in the way our immune system sees insulin and might develop an immune response to it. So this is sort of a backwards way of discovering an old drug in a new way, by screening entire libraries of agents to try to find things that fit into particular areas of a part of the immune system. And so that's that is also being planned. So we have a lot of things in the pipeline. There's a whole number of other autoimmune drugs that are used for treating things like you know, arthritis and psoriasis, and the list goes on and on that we'd love to repurpose to see if they might work well in type one. But to do those things we need patients, families willing to pay it. And of course, we need funding.
Stacey Simms You mentioned that your grandfather had type 1 diabetes. What do you remember about that? Would you mind sharing his story a bit?
Dr. Michael Haller Sure. Yeah, so I'm not terribly old. I guess it's all relative. I'm in my 40s. But I remember even as a young kid, when we essentially had to influence and that's what grandpa took. And I remember very vividly when the first blood glucose meters came out. And I have sort of some memories of when he was still using cleany test tabs for any of your old timers out there. When we were before we had the glucose testing. You sort of did a chemistry experiment in the bathroom with your urine to see what your blood glucose might have been four hours ago, to think of that where we were and again, thinking I'm not all that old of the guy to where we are now. It's just miraculous how much type one care has improved. I mean, you know, to think that continuous glucose monitor Essentially standard of care now that we have multiple insulin analogs, and you know that we have insulin pumps that are now talking to those CGM and the potential for sending closed loop systems is almost realized, is just amazing and miraculous. And my grandfather lived into his 80s. Even with old school influence, and all those things, because he lived a incredibly regimented life, he was really good at exercising every day and eat his very similar meals. And he was essentially a good patient, and did the best you could do with what the technology was. And so I use his experiences with living with type one to hopefully motivate my patients, remind them, essentially, that diabetes is always going to be a terrible disease until we can prevent and reverse it, but but if you had to choose a time to living with it, you know, now it's not so bad compared to what it used to be like. And now the pace of improvement is just accelerating so nicely that even a year goes by and we we discover and improve things better than the last 10 years. So I think the future looks very bright.
Stacey Simms I'm always astonished to hear if people who lived well, at a time before you mentioned all these great technological advances, but who lived before home glucose meters, the idea of not being able to check your blood sugar even two times a day? Or, you know, did you have to, as you said, the tabs and you know, the urine kits, and it's amazing to me, that must have been such a sea change for people like your grandfather, with his diagnosis, does that mean that you can participate in trial that can be considered enough.
Dr. Michael Haller So I would be a second degree relative as a grandchild. And now I'm unfortunately above the age limit, you have to be 21 and a second degree relative to be screened. But I've been involved in the TrialNet and before that was the diabetes prevention trial that I did get screened back when I was very first starting out in this because I've been fortunate enough to work with Dr. Desmond Schatz, who's a world renowned pediatric endocrinologist was a previous president of the American Diabetes Association, but I've worked with him since I was a teenager Actually, that's my first experience and really working in type one was working in his lab back on the first trial designed to see if we could prevent type one using oral insulin. And that was called the diabetes prevention trial type one. So back then I did get screened. Unfortunately, I didn't have antibodies and I was old enough at that point, even though I was still a kid to not really need to be re screened.
Stacey Simms That's fascinating. So in high school, you knew this was going to be your life was that because of your grandfather? What made you want to go into endocrinology?
Dr. Michael Haller Yeah, I I totally knew I was pre med. And I had that experience of seeing my grandfather. But honestly, it was it was more of a mentoring opportunity than anything else. That's just such a wonderful person to work with. really got me passionate interested about the field. And then I went off, I left. I grew up here in Gainesville, Florida, where the interest in Florida is, but I actually went to Duke University for undergraduate school. But when I graduated, and it was time to make my decision for medical school, Dr. Schatz was again, extremely influential, and he really is what convinced me to come back to Gainesville, do medical school here and then residency in pediatrics, and then along The way I started participating in diabetes camps. And that was really what did it the combination of being able to work in a field where I could do some really interesting science, take care of patients long term. And frankly, go to go to diabetes camp, which was just such an amazing experience, made it very clear to me that I should be a pediatric endocrinologist.
Stacey Simms Do you still see patients?
Dr. Michael Haller Oh, yeah, no, I do. I'm a little bit of a strange breed in that. I always have seen myself as a clinician who happens to do research. And so while I don't get to do clinic every day, cuz I have so much research and administrative responsibility now, I would never give that up. And, you know, most of the research I do is is really patient oriented research. And in fact, I get the pleasure of being able to spend more time with my research patients just because it's not under the same guys as a clinic where you have to see a patient every 40 minutes or hour. So everything I do is is really patient base, but I work with an incredible team of scientists, and so I get to work with Mark Atkinson and Todd brosco and Clive waterfall and clay Matthews and an up and coming scientists who, who do a lot of the work in the lab, and then bring us these great ideas to try to test and patients so that we have a really unique team here at the University of Florida that allows us to do those things.
Stacey Simms Is it difficult to see patients who are kids, I mean, my son has a great relationship, his endocrinologist, we've been able to see the same one. Luckily, from ages two to now he's 14. And I wonder, Is it difficult to know that you're researching, you're, you know, you're trying to do prevention and, you know, which hopefully even someday cure, but you're, the research is slow. I mean, and and we understand why it's not a criticism, but the research is slow, and the patients are growing up, is it difficult and any kind of emotional level to look at your patients and feel like, gosh, I really want to help these people more. Uh, but you know, the research just isn't as fast as we would like it to be.
Dr. Michael Haller It's so incredibly frustrating. It frankly it pisses me off, but part of why I get up every morning. come to work and I'm excited to move things forward. I mean, the pace of research is glacially slow. And I'm not a patient guy. So I've lost my cool more than one time trying to promote what I think is important research so that we can get these things to our patients faster. And that's why I mentioned I think, like a clinical guy just happened to the research, because at the end of the day, that's what pulled me into research, I realized that was what we had to do to get the patients better care. So yeah, I find the process, you know, it's necessary. It's what we have to do, we have to do good science, and that takes time. But sometimes the administrative burdens or the funding lags those things can just be so mind numbingly frustrating that, you know, really good people, unfortunately, sometimes leave the field. And so we I would encourage people not to do that, of course, we need people to stay passionate about type one and do the hard work of the research and the clinical care. But yeah, I have to go to clinic and look people in the eye and say, Sorry, I don't have anything that's good enough for you yet. And I emphasize it yet. But that's a hard conversation to have with people day in day out.
Stacey Simms I'm glad I asked. I wasn't sure that that question was going to go anywhere. Yes, sometimes people look at me like, I'm crazy when I asked things like that.
Dr. Michael Haller no, it's not crazy at all. And it's just part of why I'm excited about the entire time. It's like globulin, and ultimately, CD three and all these other things. Because, you know, we're getting so much closer to the point where I can really say to somebody who's been newly diagnosed, I have something I can actually do for you. And this may no longer be just a research question. And they'll always be research questions, because we can improve on things, but I may have a real therapy besides but we've been doing now for close to 100 years, which is just just give you insulin. Obviously we're better at doing that too. But it sure would be nice to do something besides that.
Stacey Simms Sure, would you you did mention the oral insulin study. My ears perked up on that. Is that complete? What happened with that?
Dr. Michael Haller Yeah. That's a good example of this challenge we have between risk and benefit. So for a long time, we've wanted therapies and the type one space that would be entirely without risk in Orleans one. It was one of those a pill that you take by mouth, obviously orally, but doesn't affect your blood glucose. And it's essentially an immune tolerating therapy, at least that's the idea to convince the immune system to recognize insulin that gets sort of chewed up in your stomach as a as as being you and therefore not not attack it. And the reason the rationale for this studies were that when you give oral insulin to a particular type of mouse that gets diabetes, it's very effective at preventing them from getting diabetes. And so everybody was really excited about it. And so one of the first large scale multicenter trials designed around the attempt to prevent type one was the diabetes prevention trial I mentioned and that was the precursor to what became TrialNet. And that trial, unfortunately, didn't demonstrate a benefit, although there were some signals that were, you know, suggested that there might have been benefit in certain subpopulations. And so tronics subsequently did a, again, a large trial of oral insulin in that particular population that looked like it might benefit and sadly that to fails. Demonstrate benefit. And so, you know, I think what that demonstrates is type one's really hard to fix. And to that animal models don't always tell us the whole story. In fact, they often tell us the wrong story, but we're stuck using what we got to get some idea of proof of concept. And then lastly, that we are going to likely need to use things that have more potency, that are a little bit more, you know, side effect profile associated to be able to really change the needle on where diabetes is going. That's not to say that oral insulin may not still have some potential for benefit. In fact, we've never tested it when we've given it after something like Simon globulin or to Lizzie Mab or in combination with other immunomodulatory modulatory therapy. So there may still be life for Orland Flynn or other antigens specific therapies. And there are many others that are that are sort of in line for testing as well. But that story is, you know, almost 15 years or more of effort, and just again, exemplified how long it takes to find out the real answer. We all want answers quickly. But if we don't do the science the right way, we continue to promote bad ideas and in hearsay, and that's just not how we're gonna get get real therapy that benefits patients.
Stacey Simms You know, Mike, we've talked a lot about, you know, exciting studies and some setbacks and how long things take and the frustration, are you still jumping out of bed excited to do this research?
Dr. Michael Haller Now more than ever, I mean, it's a really exciting time to be here, because we now have stuff that looks like it actually works. I mean, the feeling in the room in the last decade when we kept going to meetings and reporting negative events, was certainly weighing on everybody heavily. And so to be able to come to the American Diabetes Association and report these data nationally, internationally in the last couple years with the outcomes like Simon globulin and and CD three, really has been a huge boost everybody's morale and I think puts us in a really great space because we can continue to argue that people should be getting screen we should be doing these studies. Because we are effectively changing the Natural History of the disease. So I'm really excited about where we're going. And I just hope we can get there faster.
Stacey Simms Wow. Well, Mike, thank you so much for joining me. We'll put all the information about TrialNet in the show notes so that people can learn more and find out how to get screened on but I really appreciate that. Thank you so much for joining me today.
Dr. Michael Haller That's been my absolute pleasure.
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| 10 May 2022 | Dexcom G7 Update With CTO Jake Leach | 00:42:42 | |
Dexcom's G7 is in front of the FDA right now. There are some significant changes to the system, including what’s basically a snooze for essential alarms, including the urgent low. Dexcom’s Chief Technology Officer Jake Leach answers your questions about adhesive, direct to watch, accuracy, and even mentions the G8. Here's more information about the European approval (includes a video of the system) This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about AFREZZA**Click here to learn more about OMNIPOD**Click here to learn more about DEXCOM* | |||
| 19 Jul 2022 | DiabetesWise Pro: Unbiased diabetes tech info for you and your doctor | 00:34:30 | |
When you’re thinking about new diabetes technology, sometimes your endo is right there with you, keeping up on the latest & greatest. But if they’re not, a new resource could help. Diabetes Wise Pro includes more than just pump and CGM specs. Stacey talks to Dr. Korey Hood, the co founder of DiabetesWise, a website that launched a few years ago to help consumers make more informed decisions around diabetes tech. We’ll talk about why they launched this new effort, who it’s for and how it could even change the prescription process. More info https://providers.diabeteswise.org/#/ This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out our previous interviews with Dr. Hood: https://diabetes-connections.com/?s=korey+hood Check out the T1D exchange: https://t1dexchange.org/stacey/ Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 07 Nov 2017 | Singer-Songwriter Eric Paslay / The Betes Bros | 00:57:06 | |
Eric Paslay is a Grammy-nominated singer and songwriter. Diagnosed with type 1 when he was ten, he says diabetes has helped him in unexpected ways. Stacey talks to Eric about growing up type 1, knowing he wanted to be a musician as a teenager and what it's like now that those dreams are coming true. Eric is part of Dexcom’s Call of the Warrior campaign. Learn more about how you can use the hashtag #WarriorUp to raise money for diabetes charities through the month of November. Stacey mentions another Dexcom Warrior, Derek Theler, and plays a clip from his video. Previous episode with Derek here. In our Community Connection this week, meet The Betes Bros. Chris Pickering talks about this new advocacy and support group and shares about their experience helping out during Hurricane Harvey. Shoptalk this week is with the PADRE Foundation. Learn what this Southern California group is doing to support Pediatric Adolescent Diabetes Research Education. Join the New Diabetes Connections Facebook Group! ----- 2:30 Stacey talks about Diabetes Awareness Month efforts including those from JDRF, Project Blue November and a grass roots #MakeDiabetesVisible hashtag project. 5:30 Clip of Derek Theler's #WarriorUp Video 7:00 Clip of Eric Paslay's #WarriorUp Video 7:15 Stacey interviews Eric Paslay 38:00 Stacey interviews Chris Pickering from The Betes Bros 51:00 Shoptalk segment with Shana Baker, PADRE Foundation President 55:30 Stacey talks about Lauren Stanford, who marks 20 years with type 1. Lauren and her mother, Moira, were featured in a previous show ----- Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
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| 11 Jul 2015 | Nightscout & The Nightscout Foundation | 00:31:03 | |
The Nightscout Project is an open-source DIY project that lets users see blood sugar numbers from a continuous glucose monitor (CGM) on a smartphone, computer, tablet or Pebble watch. It came on the scene in 2013 and continues to grow at astonishing speed. Stacey speaks to Kate Farnsworth, a Pebble watchface designer for the group and James Wedding, president of the Nightscout Foundation. This episode recorded at the Children With Diabetes Friends For Life conference. | |||
| 14 Dec 2021 | Stacey's Favorite Things 2021 | 00:24:53 | |
This week… something completely different! It’s an episode all about my favorite things. With apologies to Oprah, this isn’t about the holidays – it’s a little late for that! And while some of this might make good gifts, this more of a season-less list. Just good stuff I like. Couple of rules I set for myself: Nothing that needs a prescription. Nothing that I’m getting paid for. No one on this list will even know they've been mentioned until the episode goes live! Hope you enjoy! -Stacey Here are the links to everything I mention: Keep it cool: Sticky stuff/application: Benadryl spray and Flonase spray Cases/accessories T1D3DGear (warning, profanity) Dia-Be-Tees shirts and stickers Books: Just for fun: Heroic Kid (play d-tech for toys) Misc. The Useless Pancreas (marketplace) Guitar Pick Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription below:
Stacey Simms 0:00 Diabetes Connections is brought to you by... Dario Health – Manage your blood glucose levels. Increase your possibilities.By Gvoke HypoPen, the first pre-mixed autoinjector for very low blood sugar. And By Dexcom. Take control of your diabetes and live life to the fullest with Dexcom This is Diabetes Connections with Stacey Simms. This week, something completely different. It's an episode all about my favorite things. With apologies to Oprah, this isn't about the holidays, it's a little late for that. And you know, some of this might make good gifts. This is more of just something I've been thinking about doing for a long time. So I would consider this a bit of a seasonless list, just good stuff that I like. And unfortunately, unlike Oprah, I haven't hidden everything I'm talking about here under your seat as a gift. So I can't do that. But I did set a couple of rules for myself, you're not going to hear me talk about anything today for which you need a prescription. Right, I'm not gonna talk about medical stuff, and nothing that I'm getting paid for. I will put the links for all this stuff in the show notes, but they're not affiliate links. So that means they go right to the product where I think it's most easily available. They don't go to a special link, you know, which tallies you up and then pays me. I mean, there's nothing wrong with that as long as everybody knows what's going on. And a couple of these folks may sound familiar, I've worked with them before, we have had partnerships and sponsorships with the mostly the booked clinic program. But I really just wanted this to be a fun way to share my thoughts. If you have a product that I mentioned. And the link is wrong or doesn't go exactly where you want it, please reach out. I want to make this great for you and easy for my listeners. So drop me a line Stacey at diabetes connections.com. And maybe we'll get a thread going in the Facebook group to find out some of your favorite things. Because you know, Benny is older now and the products that we really needed, you know, like the super cute insulin pump pouches that he used when he was three years old, he does not use anymore. So I don't have recommendations for stuff like that. Maybe we can kind of get a list going and I can do a follow up in a couple of weeks or months for listeners but you really should be in the Facebook group. Anyway, if you're on Facebook, I know not everybody is so if you're there, come on over. Alright, so here are a few of my favorite things
let's talk about keeping insulin at room temperature. A couple of products I really like for that we don't have a ton of issue with this day in and day out. I do live in North Carolina and Benny of course is outside quite a bit in the summer, he does go to summer camp. When we've needed to keep something at room temperature. We use a Frio generally these Frio wallets pretty standard in the diabetes community you probably know about them. What's nice is you can get them at CBS. Now, I think Walgreens carries them used to be online only. They're really easy to use. Please follow the directions. Don't be like me and oversaturate and then you can't get anything in the wallet. You have to just read the directions. You'll figure it out better than we did. But Frio doesn't keep it cold. It just keeps it cool. But we love Frio. Close to edging it out. And the only reason it doesn't here is because of the price. And because it doesn't yet cover vials. But that's coming is the VIVI Cap. These folks reached out to me middle of last year, probably spring of last year and sent us a sample we decided to try it on Benny's trip to Israel. If you'll recall, my son went to Israel with his non diabetes camp last summer for a month. This included tons and tons of outdoor activity in temperatures that were in excess of 100 degrees. Quite often, he packed two bags, one was like the go bag, three days worth of supplies. And then the other bigger bag that stayed inside or in a refrigerated area, at least the insulin part of it did on the bus or you know, wherever they went, I have my suspicions as to whether it's stayed perfectly refrigerated the whole time, but only a little bit of insulin went into the desert with. But the idea was he would take a pen, we would use the VIVI Cap, and then he would just change the pen out continuing to use the VIVI Cap in his backpack. Whenever he needed more insulin. He had vials he had pens we use both in his pump. And it's always nice to have a pen in case you need to give yourself a shot something like that. So when he came home and this is so typical of my son went through his bag, for he did a great job with diabetes, but there must have been like a communications problem because he never changed out that insulin pen. He never needed to give himself a shot, which is probably why but he just always used the vials that I'd sent him with. I sent him with way too much insulin for a month but you know, you know mom's What am I gonna do? So upshot of this long story is that the one insulin pen that we sent to Israel with stayed in hot temperatures definitely in excess of probably 75 degrees around the clock, and certainly in excess of 100 degrees for several days at a time during the daytime. And what happened to it right it was with the VIVI Cap the whole time so we decided to test it out. You know how he supervised setting right? I wasn't going to let him use this pen and then jaunt off do overnights or whatever he was with us. And look, we would know right away if that insulin was no good. And guess what? It worked perfectly. It was fantastic. He was in range. I mean, he was really we were really watching obviously, right. But he was in range pretty much the whole three days. So it was fantastic. And I was definitely converted to VIVI Cap. That should be their tagline guys call me if you can stand the Israeli desert heat, right, you can certainly hang out a day camp in North Carolina this summer. They often have promo codes, discounts. It's more expensive than the Frio wallet. But it's also really durable and lasts for a whole year. And it has different sizes. So it will fit whatever insulin you're using. My understanding is that they are working on a similar bit of technology for insulin vials, and that would be great.
Let's talk a little bit about getting stuff to stick. I have a whole document about this. If you haven't seen it, it's been a pop up for a couple of months. It's been incredibly popular. So I haven't taken it down yet. But I'm probably going to move it over to the bookstore section. Do you don't have a bookstore section on the website, we're kind of creating a place to put documents a lot of stuff is free. There are PDFs, so we're gonna move that over there. But of course there there's my book to buy and there will be more later this year. But the getting stuff to stick is so personal. I think it's really hard right? Everybody's skin is so different. So here's what we have liked over the years could not keep anything on Benny skin with a Skin Tac that is the brand that we like we get Skin Tac from Amazon. Over the years we've gone from just using the little Skin Tac wipes to using the liquid bottle we used to liquid for many years. I think gosh, Benny was like 13 or 14 and he was like no more. I don't want that it's not portable enough. He's never home. So he uses the wipes. Now. He uses nothing to dissolve it. So I have no favorite product for that. He literally just rips things off his skin. I cringe every time but hey, it's not my body. We like Stay Put Medical patches. That's the brand, Stay Put Medical just foyer for years and years. We had trouble in the water. I tried vet wrap I tried all the stuff that all the moms tell you to try. The Dexcom overlays that come free from the company are great, but it didn't work as well in the ocean, or with sweat, that kind of thing. So Stay Put patches really were fantastic for us. The story I always tell is Benny with a diabetes camp for a full week, right Saturday to Saturday. And then we went to the beach and we restarted the ducks calm. This was a couple of years ago. And it survived to Stay Put and the Dexcom survived a week of diabetes camp where they swim and sweat and you know, they're pretty gross for a whole week. It's hot. Again, as I said we live in North Carolina, and then three days at the ocean, sand and ocean. All that stuff that you get and it really did stay put. So I really love that they're big. He got an incredible tan line. That's one of the only downsides of it. We used Benadryl spray, Benny had a brief time of having a mild allergic reaction. I think this was to the Dexcom G5 years ago and my husband came back from the store with over the counter Benadryl spray not Flonase requested, and it worked fine. So it's kind of a weird, favorite thing, but I haven't heard a lot about Benadryl spray, but I'll mention it here. I also really really like next care waterproof Band-Aids, the brand doesn't really matter. I mean, it's just a Tegaderm bandage, but I'd like to mention it because you can get it at the drugstore or the grocery store. It's over the counter. Unlike a lot of the stuff that has to be ordered from your medical company or from Amazon, you can take a waterproof bandage and in a pinch, slap it over your Dexcom or slap it over an infusion set. I mean, you have to cut a hole into for the infusion set. But sometimes you can just slap it on top. We've done that and then gently pulled it off later to reconnect to the tube to pump. And it works great. I've heard a lot of people say they're afraid of doing that because they don't want to block the signal from the Dexcom people. We have done this many, many, many times I can show you photos. When we went to the Dead Sea in Israel, I did not want to take a chance of the salt. Right. It's so salty, corroding the transmitter. So we put a waterproof bandage over the Dexcom. And he left it on for a couple of days. I don't know the probably wasn't very comfortable, but he didn't seem to care. And it worked fine. So that's my in a pinch favorite thing at the beach
let's talk about cases and organization something that my son doesn't care about at all. And if I if this were me, I'm the kind of person that I love pouches and organization and cool stuff like that and he really doesn't care. But I will go through and tell you what I like. I am a huge fan of T1D3DGear. This is just a fantastic family in the diabetes community to begin with, and their stuff is awesome. So as you can imagine T1D3DGear, they're making stuff right they're printing it out on their 3d printer and it's everything from trays, which we do use, I love those makes your supplies really easy to find. And they've got different sizes for different brands to insulin protection vials, which I like a lot, and they will do custom colors as well, we've been so lucky, where's the wood that I can knock that we've never actually like dropped a vial, but I always put the vial we're using in the case. And that makes me feel so much better. It's just a really easy, it kind of looks like R2D2 in a way. I don't think that's by design, but it's really helpful and really handy and they're making super useful products. They also make the cutest ones like if your kid wants a unicorn or different options. I'll link up their website, as I mentioned, Benny doesn't really like pouches, but I make him use them anyway because otherwise his diabetes bag is just a complete mess. So we like the ones from casualty girl, some of these have a bit of profanity, you know, all my diabetes stuff. You can fill in the blank there, but they have a bunch of really clean ones, obviously, you know, for younger children, even for my kid I don't like him carrying stuff in public that that has profanity on it, but they have some really cute stuff specific to diabetes, also personalized. They put names on it, and they were so nice. A couple of years ago we gave away a bunch of their stuff at friends for life, so I always like to recommend them. I also will recommend and link up Disney themed pouches that don't look super Disney. I know a lot of you especially friends for life people you're big Disney fans. I am too but I don't like to have like Mickey Mouse on my purse. I like it to be a little bit more subtle. And at red bubble. There's a bunch of people who will put together pouches you can see the samples. They just kind of hint at Disney so I have the small world pouch but it's just like a pattern that is featured in small world. It's not actually it doesn't say small world. I got Lea my daughter for Hanukkah. This year. I got her one that has the Haunted Mansion wallpaper on it. You'd never know unless you knew. So very cool stuff. It doesn't have anything to do with diabetes. But I love red bubble. They also have a fun bunch of diabetes stickers there. Oh, speaking of stickers. The best is Dia-Be-Tees This is my friend Rachel. And she has amazing T shirts. She is so creative. She's got great stickers, she made an ugly Hanukkah sweater for diabetes, because a couple of years ago, she makes these great, ugly Christmas sweaters for their diabetes steam. They say funny stuff on them. But I pointed out to her like, hey, everybody celebrates Christmas and she was immediately on it. My favorite stickers are the Tyrannosaurus Dex, get it and the Banting fan club that she made this year for Dr. Banting. Very, very cool stuff. And I'll link up to her Etsy shop.
Let's talk about books. I promise I won't talk about my book here. I talk about it enough. But I really would like to recommend some books that have helped us a lot over the years. My favorite, the one that I always recommend is Think like a pancreas A Practical Guide to managing diabetes with insulin. And that is by the amazing diabetes educator Gary Scheiner. He is out with an updated edition. So he did this book, it's got to be I don't know, Gary, I'm guessing 10 years old, but he does update it frequently. I think it's the third edition now. It's really a great source and resource to understand your diabetes and your child's diabetes better and more thoroughly, let's say then perhaps you might get these quick endocrinology visits, definitely better than the information you're getting on Facebook. I of course love raising teens with diabetes, a survival guide for parents by Moira McCarthy that has not been updated for the technology that has come out since its publication. However, I don't think that matters. I think that there are so many wonderful ideas, thoughts and ways to recognize how tough a time it is for teenagers and come through that time with your relationship with your child intact. So I really recommend that I know Maura is working on updating it. But even still, it's so good because I think so many people with teenagers, even as we say all the time Oh, it's such a tough time. It's they feel so alone. I still I mean gosh, you guys I always wonder and I call Moira. She would vouch for me. And I'm like I'm not doing this right. It's hard. It's really hard. I also love Sugar Surfing how to manage type 1 diabetes in a modern world by the amazing Dr. Steven ponder, I would be lying if I said we are perfect sugar surfers. But we have used a lot of the principles that are in this book. And it does help you understand so much about how everything works and the dynamic way of managing. You know before CGM. It's incredible to think how much Dr. Ponder was able to do. And now with the monitoring, it's really, really helpful. But I will say you can get this for free. If you're newly diagnosed, I believe it's the first three months it might be six months, I will link it up. But I'm telling you right now, if you get this for free when you're newly diagnosed, put it away for a couple of weeks at least maybe put it away for six months, because it's it's pretty advanced in my opinion, and you got to learn diabetes, you got to learn a little bit more about it before you start worrying about the Delta and other stuff that's in here. But I love Dr. Ponder and highly recommend that one. I get asked a lot about children's books. And you know Benny and I read so many diabetes children's books, so many I mean how many are there in the market but we read them so often when he was little And my favorites probably aren't even available anymore. You know, Jackie's got game was about this kid who was trying it for the basketball team. And then he goes low. We loved Rufus comes home, which is about the JDRF. Bear, there were a couple of that diabetes kind of popped up into lots of picture books that we read if the person in them didn't have diabetes, or the animals in them. But I gotta be honest with you, I struggle to recommend children's books, because I'm not reading them with little kids anymore. And I think they're a really good judge, right? I do. Like when I go low, a diabetes picture Guide, which is a terrific book by ginger Viera. And Mike Lawson. And this is a terrific book, because both of those people live with type one, we had them on the show, you know, I've known them for years I full disclosure, but I think it's so valuable because as a parent of a child with diabetes, who doesn't live with diabetes herself, I don't have that kind of insight. And I really trust those authors to share that information and help a child kind of give voice to how they're feeling when they go low, that sort of thing. It's a fun, cute book, it's, you know, it's not serious. It's not scary. It's really great. And I'm just gonna say, and don't be mad parents, if you're thinking of writing a children's book, just carefully consider it. Look at what was already out on the market. I talked to a lot of people who spent a lot of money to put these books out, you know, most of them are not published by a traditional publishing house. Some are but most are self-published. And that's great. But you know, gosh, there are so many out there right now that are very similar. So you know, we don't need a general explainer, please think about what the need in the community is, what's the unique need, you can fill? And I would say, you know, that's why I like when I go low, because it's written by people with type one, we do need them. I mean, the children's books are great. And there's some wonderful ones out there, but I'll tell you, what I'd like to see is some elementary school and tween level books. That's what we really need around here. We don't need another picture book, we need something that an 11 year old or an eight year old could read and see themselves in, you know, baby sitters club is the only thing I can think of where diabetes is there, but it isn't always the focus, it would be really nice to have something else like that. Frankly, I'd like to see that adult level book as well. There's a couple of authors that have written books were diabetes featured but isn't like the main point. But boy, it would be really fun to see that in like a blockbuster bestseller kind of book if they got it right of course.
Alright, let's talk about some just for fun stuff. years ago, Benny got his years ago on his 10 year diaversary. So five years ago, we gave Benny the I heart guts, stuffed pancreas. I heart guts is a company that makes they're so funny. They make stuffed animal type body parts, I'm sorry, they call them plush organs. And since we purchased a few years ago, they have a few more options on their website. They have socks, they have pouches, I was talking about pouches earlier, there's one that says party in my pancreas. But what I really like about this is you can get something for your kiddo with type one. But you can also find something for a sibling who doesn't have diabetes, right? If you're if you're just looking for something silly, I gave my daughter the heart, right? I mean, knock on wood, thank God, there's nothing wrong with her heart. But it was a symbol of my love for her. And while she thought it was kind of silly, you know, it's a way to include her. So diabetes isn't always you know, the middle of everything. And they I mean, this place absolutely cracks me up. There is so much here. They've got puns as far as the eye can see. So if your kid needs their tonsils out, if your wife is having a knee replacement, these are just really fun. And I may have to go and order a huge amount of the stickers. One of the things I absolutely love is that a lot of businesses have popped up to make toy accessories for kids with diabetes. So you know, you've probably heard like Build A Bear has a diabetes kit, you can get that online. years ago, the American Girl doll kit kind of kicked this off. But there's a bunch of people in the community making this stuff. So I recommend heroic kid, and they make tiny little CGMs for your Elf on the Shelf. If you're into that, or you can put it on an American Girl doll. You can have a libre, they now make a bunch of insulin pumps. It's awesome. I love this stuff. I mean, I can't even imagine if we'd had a real real looking insulin pump for Benny when he was two years old that he could have stuck on his Elmo. Holy cow. So heroic kid is fantastic. And the other thing for kids I wanted to share. And I I tell if you saw my newscast last week, we talked about this I broke this story in 2019. Jerry the bear, and Rufus the bear are now one, there can only be one, there was only one bear. And we talked about this when beyond type one and JDRF announced their alliance in 2019. I kind of jokingly asked like what happens to the bears? And they answered it with a straight face and said only one. We're gonna figure this out because it doesn't make any sense to have to, you know, we don't want to be spending money on this kind of stuff. So what happened is Rufus is now $22 which is a lot less than the starting price of Jerry. And if you're not familiar, I probably should explain. So Jerry, the bear is an interactive toy made by the folks at Sproutel, they have gone on to make things like my special AFLAC duck. They have, I think it's called a purrburl. It's like a little stuffed animal that kind of helps kids kind of calm themselves. It's interactive that way. And but they started with Jerry, the bear was their first product developed when these guys were in college. It's a really smart team. But Jerry is a teaching toy. And there's an app on he's evolved over the years and really looks great. And of course, now he looks like Rufus. So this is Rufus on the outside Jerry on the inside, and it's available for $22. I'm gonna call this next category, miscellaneous, because these were just a couple of things that I wanted to make sure to tell you about. But they don't fit into many of these categories. And the first one popped up into my Facebook feed. But it looks beautiful. It's a ring. It's kinda like a zigzaggy ring. But it's called to my daughter highs and lows ring, it is only $36. It is cubic zirconia. It is sterling silver plated with 18 karat gold. So this is not a you know, super expensive super valuable ring. And that's fine. I think it's great for what it is, makes it a terrific little gift. And it comes with a card that says the ring stands for the highs and lows in life, wear it as a reminder that I will be there for you through all of them. That's pretty cool. And hey, moms, I mean, you can buy it for yourself. Even though we go through some highs and lows, they don't all have to be diabetes related. I want to mention, this is very silly. But this is our miscellaneous category. And these are my favorite things. I think everybody who uses a Dexcom should have a guitar pick lying around. Because you've probably seen the trick to use a test strip to to pry the Dexcom transmitter out of the sensor for a couple of reasons doesn't work for us. I don't know if our test strips are weak or our transmitters are strong. But we have found that a guitar pick does the trick very easily. And I'll tell you the number one reason why we have to remove Dexcom transmitters, it's because then he will start a dead transmitter, or I'll start a dying transmitter. And he'll ignore all the notifications, we'll put the sensor on and clip the transmitter and then the transmitter is dead. So yeah, the guitar pick comes in handy to pry that out and then put the new transmitter in. I also want to recommend a website not a product here but Useless Pancreas.com is a clearinghouse for so many products. They've done an amazing job. We had them on the podcast earlier this year. But since I talked to them, they've added so much. So if you're tooling around and you're not sure even what you're looking for, like I need to get something that'll make stuff stick or I need something that'll they have these two categories, like what will make my kid happy. It's just a neat place to go and find a diabetes marketplace. So I'd like to recommend that because, you know, you go on Amazon, there's so many choices. But they've done a nice job of really trying to narrow it down and give us one place to go. Alright, before I wrap it up here, I did ask Benny if he had any favorite diabetes, things to recommend. And he looked at me like I hit three heads. After thinking about it for a minute or two. He said, The silent button on my pump and Dexcom. So I can't say I blame him for that. I am happy that he has the vibrate only we wish every alarm could be silenced. We understand why they cannot be. So there you have it. That's my very first favorite things episode, I will put a link in the show notes. For every item that I talked about here, I want to make it easy for you to find. Again, if you are haven't mentioned and you have a product and you're not crazy about the link I use, feel free to email me Stacey at diabetes connections.com or ping me on social media and we will figure it out. I want to make sure that people can find your stuff. And if you have your own favorite things that you'd like to list, I think I will put something in the Facebook group and maybe we'll share that in the weeks to come. Thank you as always to my editor John Buchanan from audio editing solutions. Thank you so much for listening. A couple of weeks left in December, we are going to have these Tuesday episodes, as I mentioned, including kind of a look ahead to next year some predictions possibly. And I'm really hoping to get one more technology update for you in before the end of the year trying to get someone from Tandem to come on and talk about that R&D update that I spoke about in the news episode. Last week. They laid out their five year plan for new products and software. But I will see you back here on Wednesday for in the news or if you listen on podcast. That'll be Friday. All right. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.
Benny 24:43 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged | |||
| 29 Dec 2023 | In the News... Does food-as-medicine work for T2D? Fake Ozempic warning, new Tzield research, My Cause My Cleats and more! | 00:07:29 | |
It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: a new study looks at food-as-medicine for type 2, another FDA warning about fake Ozempic, new research says gut markers may help predict who Tzield will work best for, JDRF partners with NFL and more... Happy New Year - we'll see you in 2024! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com Episode transcription: Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now. XX In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark XX Our top story this week… XX You often hear people say food is medicine.. but an intensive program trying to show that’s the case did NOT improve glycemic control in adults with type 2 diabetes any better than usual care. This was a randomized clinical trial. After 6 months, both groups had a similar drop in HbA1c -- 1.5 percentage points among program enrollees and 1.3 percentage points with usual care, with no significant differences in other metabolic lab values between the groups either, the researchers wrote in JAMA the food-as-medicine participants even gained some weight compared with the usual care group over 6 months (adjusted mean difference 1.95 kg, P=0.04). "I was surprised by the findings because the program is so intensive," Doyle told MedPage Today. "The health system built brick-and-mortar clinics, staffed them with a dietitian, nurse, and community health worker, had weekly food pick-up for 10 meals per week for the entire family, and participants spend a year in the program."
Costing an estimated $2,000 annually per participant, the food-as-medicine program allowed participants to choose from a variety of vegetables, fruits, and entrees each week -- enough food for two meals a day, 5 days a week. They were also provided recipes and cooking instructions and met with dietitians to track goals. On the other hand, the control group was only provided usual care, a list of local food bank locations, and the option to join the program after 6 months.
The trial was conducted at two sites, one rural and one urban, in the mid-Atlantic region. It recruited 465 adults with type 2 diabetes who completed the study, all of whom started with an HbA1c of 8% or higher. All participants were also self-reported as food insecure. The average age was 54.6 years, 54.8% of participants were female, 81.3% were white, and most resided in the urban location. Of note, all participants also resided in the program's service area and were affiliated with the health system that ran it.
"One study should not be over-interpreted," said Doyle. "It is possible that such a program could work in other contexts, among patients less connected to a health system, or in other formats. The main alternative to providing healthy groceries and education is to provide pre-made 'medically tailored meals.'"
"I hope the study raises awareness of the potential for food-as-medicine programs to increase healthcare engagement and to push researchers and policymakers to generate more evidence on ways such programs can improve health." It’s worth noting that there is very little study – much less clinical trial level study on this type of thing. The researchers say they hope it spurs more research to find methods that will have a large impact. https://news.mit.edu/2023/food-medicine-diabetes-study-1227 https://www.medpagetoday.com/primarycare/dietnutrition/107998
XX New information about moderate low carb diets for people with type 1. The study published in The Lancet Regional Health - Europe is the largest of its kind to date. Participants were for different periods randomly assigned in a crossover manner to eat a traditional diet with 50% of the energy from carbohydrates, or a moderate low-carbohydrate diet with 30% of the energy from carbohydrates.
The 50 participants all had type 1 diabetes with elevated mean glucose, long-term blood sugar, and injection therapy with insulin or an insulin pump. Half were women, half men. The average age was 48 years. Participants on a moderate low-carbohydrate diet were found to spend more time in what is known as the target range, the range within which people with type 1 diabetes should be in terms of glucose levels. The increase in time within the target range was an average of 68 minutes per day compared to the traditional diet, while the time with elevated values was reduced by 85 minutes per day. The researchers saw no evidence of adverse effects. https://www.news-medical.net/news/20231220/Moderate-low-carb-diet-safe-and-effective-for-adults-with-type-1-diabetes.aspx
XX Researchers at Case Western Reserve University and University Hospitals have identified an enzyme that blocks insulin produced in the body—a discovery that could provide a new target to treat diabetes.
Their study, published Dec. 5 in the journal Cell, focuses on nitric oxide, a compound that dilates blood vessels, improves memory, fights infection and stimulates the release of hormones, among other functions. How nitric oxide performs these activities had long been a mystery.
The researchers discovered a novel “carrier” enzyme (called SNO-CoA-assisted nitrosylase, or SCAN) that attaches nitric oxide to proteins, including the receptor for insulin action. Given the discovery, next steps could be to develop medications against the enzyme, he said. https://thedaily.case.edu/new-cause-of-diabetes-discovered-offering-potential-target-for-new-classes-of-drugs-to-treat-the-disease/ XX The Food and Drug Administration on Thursday warned consumers not to use counterfeit versions of Novo Nordisk's diabetes drug Ozempic that have been found in the country's drug supply chain.
The FDA said it will continue to investigate counterfeit Ozempic 1 milligram injections and has seized thousands of units, but flagged that some may still be available for purchase. The agency said the needles from the seized injections are counterfeit and their sterility cannot be confirmed, which presents an additional risk of infection for patients.
Other confirmed counterfeit components from the seized products include the pen label and accompanying information about the healthcare professional and patient, as well as the carton. The FDA urged drug distributors, retail pharmacies, healthcare practitioners and patients to check the drug they have received and to not distribute, use or sell the units labeled with lot number NAR0074 and serial number 430834149057.
People who have Ozempic injections with the above lot number and serial number can report it directly to the FDA Office of Criminal Investigations. https://www.nbcnews.com/health/health-news/fda-warns-ozempic-counterfeit-diabetes-weight-loss-rcna130871 XX New research indicates that information in the gut may predict how well a person responds to Tzield. That’s the medication approved earlier this year to delay the onset of type 1. These findings reported in the journal Science Translational Medicine, casts a new spotlight on the immune system's relationship with the microbiome, revealing how gut microbes can shape the progression of type 1 diabetes. With this new knowledge in hand, clinicians may better pinpoint patients who are most likely to respond to teplizumab. https://medicalxpress.com/news/2023-12-gut-microbes-patients-response-drug.html
XX Experts are advocating for universal screening for type 1 diabetes. With the availability of Tzield and other medications on the horizon, there's a stronger push for screening earlier in life. At least 85% of people who are newly diagnosed do not have a family history of diabetes. Testing for autoantibodies can be completed at home through the TrialNet clinical trial program, or at a doctor’s office or lab. For instance, JDRF’s T1Detect program provides at-home testing for $55, with lower-cost options for people in financial need. The 2024 American Diabetes Association (ADA) Standards of Care recommend more intensive monitoring for the progression of preclinical type 1 diabetes. The Standards of Care also recommend using Tzield to delay the onset of diabetes in people at least 8 years old with stage 2 type 1 diabetes. https://diatribe.org/type-1-diabetes-it%E2%80%99s-time-population-wide-screening XX Commercial XX
https://www.healthline.com/health-news/the-years-biggest-medical-advancements-in-diabetes-treatment XX DRF, the leading global funder of type 1 diabetes (T1D) research, is recognizing the NFL stars who showcased their creativity and a remarkable show of support as part of the highly anticipated annual "My Cause My Cleats" (MCMC) campaign.
The My Cause My Cleats initiative allows NFL players to wear custom-painted cleats during selected games to raise awareness and funds for the charitable causes closest to their hearts. The unofficial start of the campaign begins on Giving Tuesday with unboxing day events showcasing the players' cleats and the stories behind them. It continues through weeks 13 and 14 of the season, culminating with the players donning their cleats on game day. After the games, some players donate their cleats to their chosen charities or the NFL auction, with all proceeds going toward their selected causes.
Type 1 Diabetes is a life-threatening autoimmune condition that affects people of all ages, regardless of family history or lifestyle choices. To live, people with T1D must carefully balance injecting or infusing insulin with their carbohydrate intake throughout the day and night. T1D impacts approximately 1.6 million people in the U.S. It is unpreventable, and there is currently no cure.
This year, JDRF is thankful for the support of several players who have T1D or are advocating for their loved ones with T1D, including Mark Andrews of the Baltimore Ravens, Orlando Brown, Jr. of the Cincinnati Bengals, Blake Ferguson of the Miami Dolphins, Collin Johnson of the Chicago Bears, Chad Muma of the Jacksonville Jaguars, Nate Peterman of the Chicago Bears, and Kevin Radar of the Tennessee Titans.
"The NFL players who support JDRF through the My Cause My Cleats exemplify the passion and determination at the heart of the type 1 diabetes community," said Kenya Felton, JDRF Director of PR and Celebrity Engagement. "They serve as inspirations for many adults and children affected by T1D, demonstrating that with an understanding of T1D, effective management, and a good support system, you can overcome the challenges of the disease. Their support helps to increase awareness and is significant in helping JDRF advance life-changing breakthroughs in T1D research and advocacy initiatives."
Since its inception in 2016, the MCMC campaign has provided a platform for many NFL players and affiliates to support JDRF's mission, including Beau Benzschawel, David Carr, Will Clarke, Keion Crossen, DeAndre Carter, Reid Ferguson, Jaedan Graham, Jarvis Jenkins, Collin Johnson, Henry Mondeaux, Jaelan Phillips, Adam Schefter, Brandon Wilds, and Jonah Williams.
XX Join us again soon!
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| 09 Dec 2023 | “I’m never going to stop speaking up” Mila Clarke turned her diabetes misdiagnosis into her mission | 00:39:43 | |
Mila Clark became a popular advocate for type 2 diabetes after her diagnosis in 2016 But she was actually one of the many adults misdiagnosed – she actually lives with LADA. One of the biggest changes she experienced was how her health care providers treated her, they were much more supportive when they realized she had LADA – also called type 1.5. Mila is working to reduce the stigma around all types of diabetes. We talk about her advocacy, her Hangry Woman business, the unique patch pump she’s using and a lot more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Find out more about LADA Our previous episode with Mila here Find out more about Moms' Night Out
Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 23 Aug 2022 | "Set them up for success" - Back to school T1D help from an educator who's been there | 00:51:53 | |
Back to school can be one of the most stressful times for parents of kids with T1D and it’s okay to admit that. This week, Anna Sabino, of Finding Smiles Coaching, a diabetes educator who lives with type 1, joins Stacey to help you out! We’re going to go through 504s, school supplies, remote monitoring, last minute issues and set you up for long term success. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Anna, including a great special she has for parents and families right now: https://www.findingsmilescoaching.com/ ADA Safe at School: https://diabetes.org/tools-support/know-your-rights/safe-at-school-state-laws 504 plan examples: https://diabetes.org/tools-support/know-your-rights/safe-at-school-state-laws/written-care-plans/section-504-plan Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 25 Jun 2015 | Miss Idaho Sierra Sandison #showmeyourpump | 00:37:25 | |
In 2014, Sierra Sandison won the Miss Idaho pageant with an insulin pump clipped to her bikini, prompting the #showmeyourpump social media movement. We talk about her new book and online projects as well as take a look back at her incredible experience at the Miss America Pageant. In Community Connections, you'll hear about a new diagnosis, a new school, and a fortuitous meeting for the family of a first grader. | |||
| 28 Jul 2020 | Hydroxychloroquine and Type 1 Diabetes?! Why TrialNet Is Looking Into It | 00:29:29 | |
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show. Watch the JDRF Facebook event with Dr. Jane Buckner Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes. Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast. This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet. So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo. Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that. Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet.
Dr. Jane Buckner 4:25 And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes. The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial. So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas. What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin. Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those. we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease. at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one. And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers. This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on. So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost. Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this. So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19. Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done. Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant. I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day.
Announcer 24:40 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 24:46 More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom. Back in the olden days before share, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo.
So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question. And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud? Stacey Simms 28:53 All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself.
Benny 29:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved, All wrongs avenged | |||
| 12 Feb 2019 | Ask the D-Moms / #DPodcast Week - Spare a Rose | 00:49:17 | |
Advice from the diabetes parents you know and love! Stacey and Moira McCarthy answer your questions in our new monthly segment: Ask the D-Moms. This week, talking to your child without nagging. Is it possible? We also answer questions about discipline, babysitting and letting go when it really scares you. Plus, it’s Diabetes Podcast Week so I’ll be sharing some other great shows and letting you know how you can help a the Spare a Rose Campaign, which benefits Life for Child. And Tell Me Something Good! A proud husband shares news and a college student takes on diabetes myths in media.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- 1:40 Stacey welcome: Vote for Diabetes Connections on WFAE's Queen City Podcast contest.
Diabetes Daily Grind Real Life Podcast - The Hot-Tub Episode 8:45 Ask the D-Moms: Moira & Stacey answer your questions 42:00 Community Connection: Diabetes Podcast Week to benefit Spare a Rose - Life for a Child 45:30 Tell Me Something Good! Steve Tornambe writes in that he's proud of his wife for bringing her A1C down signfiicnatly (and he's happy his insurance finay covered the Dexcom G5). And we found out that former guest Courtney Gale's research paper/proposal on Hollywood's Perceptions of Diabetes was selected for the Eastern Communication Association Conference. It’s titled “Diabetes in the Media: How Hollywood is Causing Miseducation.” Listen to our previous episode about College with Courtney and her mom here.
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| 19 Apr 2022 | "Diabetes Sucks, And You Can Handle It" - Psychologist Dr. Mark Heyman | 00:41:46 | |
We don’t need to tell you that the mental burden of diabetes is a heavy one. And most of us – caregivers and people with diabetes alike - are never given any resources to help. My guest this week is trying to help. Dr. Mark Heyman is a diabetes psychologist and lives with type 1 himself. His new book is called “Diabetes Sucks, and You Can Handle It.” We talk about why he wanted to write the book, who it’s for and what we can learn from his experiences. talk about some of the common fears and worries he hears and what he advises his patients. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about AFREZZA**Click here to learn more about OMNIPOD**Click here to learn more about DEXCOM* | |||
| 11 Nov 2019 | Ask the D-Moms: Handling the Holidays With Type 1 Diabetes | 00:50:02 | |
This week…. Ask the D-Moms, talking about the holidays. Thanksgiving is just around the corner and it can be stressful, not just because of well meaning family but for many people who are facing their first thanksgiving with type 1: Find out more about Stacey's new book! Moira McCarthy and I will answer your questions about food, drinks and what to say to people who after a lot of time still may not get it. Join the Diabetes Connections Facebook Group! -Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! | |||
| 20 Oct 2015 | Dexcom: The Latest News & What's Ahead, with CTO Jorge Valdez | 00:37:39 | |
Dexcom's Chief Technical Officer Jorge Valdez answers questions about their new G5 Mobile CGM, the partnership with Google and what's next for Continuous Glucose Monitoring technology. Stacey also talks about CGM/Medicare legislation in front of Congress. | |||
| 07 Nov 2023 | “Every patient deserves to fully understand” - Art, medicine, & T1D with Dr. Mike Natter | 00:51:38 | |
Dr. Mike Natter took a non-traditional path to becoming an endocrinologist, starting out as an art student. But it turns out, the universal language of drawing can help break down barriers Mike lives with type 1 – he was diagnosed at age 9. This is a wide ranging interview, we talk about his diagnosis at age 9, finishing his medical residency in NYC during the height of COVID, what he learned from his test run with the new Beta Bionics iLet pump, and a lot more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 01 Jul 2022 | In the News... type 1 prevention study, CGMs for older adults, Lilly Diabetes Medals are back and more! | 00:06:37 | |
Top stories in the news this week: researchers are testing an injection to help prevent type 1 diabetes while not harming the immune system, a new study looks at older adults and CGM use, help for pharmacists when it comes to prescribing CGM and a new group takes over the Lilly Diabetes Journey Award Medals. Plus, amazing feats of endurance from ultra athletes with type 1 diabetes. Learn more about the T1D Exchange: https://t1dexchange.org/stacey/ Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM*Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. https://www.dailymail.co.uk/health/article-10952755/Type-1-diabetes-stopped-strikes-thanks-simple-jab.html https://swimswam.com/60-year-old-iron-man-don-muchow-swims-around-key-west-for-diabetes-awareness/
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| 02 Jul 2024 | Dexcom updates from ADA 2024 with CEO Kevin Sayer | 00:36:33 | |
Stacey sits down with Dexcom’s CEO for an in-person interview at ADA Scientific Sessions. Dexcom made a little bit of news at the conference, but it’s a less-trumpeted replacement policy that had you all asking a lot of questions. We’ll go through the latest news, updates, sensor issues, and a peek into the future with Dexcom’s CEO Kevin Sayer. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Find out more about Moms' Night Out - registration is open for Denver and Philadelphia! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com | |||
| 26 Jun 2018 | Turning 65 With T1D: Medicare & More | 00:44:21 | |
Many baby boomers have lived with diabetes for decades, others are newly diagnosed. But everyone finds when they reach 65.. things get complicated. That’s because of course 65 is when Medicare kicks in. Our guest, Dennis Goldensohn has lived with T1D for 50 years and is finished his first year on Medicare. He’s got a lot to say. Plus.. a look at Medicare’s new policy regarding Dexcom Share – don’t throw away your receiver yet! Read Test Guess & Go for Dexcom/Medicare information More information here with the updated Medicare policy And I’ll share a little bit about the start of our summer and diabetes camp. Benny went noodling(!) and had a difficult diabetes situation later that night. Stacey shares how he handled it and what went through her mind hundreds of miles away.
Join the Diabetes Connections Facebook Group! ------ 1:30 Stacey welcome, talks about ADA Scientific Sessions, Tandem Basal IQ approval (more next week). 4:45 Interview with Dennis Goldensohn 30:30 Stacey talks about Medicare/Dexcom 33:45 Stacey talks about their travel and Benny's adventures "noodling." 34:00 Carrie vs Kerri - Information about Audible - Get your 30 day free trial and free book here
Sign up for our newsletter here Get the App and listen to Diabetes Connections wherever you go!
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| 20 Feb 2024 | "I needed to take my own advice" - Catching up with advocate Chris Ruden | 00:32:45 | |
We are far away from New Year’s resolutions and it’s feeling a little wintry and dreary around here. Good time to get some motivation and check in with Chris Ruden. Many of you know likely know Chris – who lives with type 1 - from his appearance on the Titan games, his bodybuilding videos or maybe it’s the videos where he shows his prosthetic hand. Chris has a lot to say about where all of that has brought him and what’s different for him now. He also uses the implantable Eversense CGM – always a lot of questions about that, so I asked him all about it. More about Friends for Life here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com | |||
| 18 Jan 2022 | "Nobody's Talking About It" - The unique issue of getting older with T1D | 00:44:24 | |
Diagnosed almost 60 years ago, Joanne Milo loves technology and helped start the popular Loop and Learn group. She’s also passionate about diabetes and aging. It's hard to believe now, but many people diagnosed in the 1960s and 70s were told they wouldn’t live to age 40. Thankfully, that wasn’t true. But the medical world wasn’t prepared for them to actually live long and healthy lives. There is very little research or support for people with type 1 over the age of 50. Imagine when you get to 80 or beyond! Joanne Milo is also the author of the book and blog “The Savvy Diabetic” and she has a lot to say about how we can all prepare better for emergencies or hospital stays. Joanne's website - The Savvy Diabetic This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) | |||
| 08 Apr 2022 | In the News... Testing new T1D treatments, 6-month CGM launches in the US, Dexcom One and more! | 00:08:04 | |
It’s “In the News…” Got a few minutes? Get caught up! Our top stories this week include testing a new treatment for leukemia to see if it might help with type 1, Black patients with type 1 are at higher risk of DKA, transitioning from teen care to adult care, updates on Eversense in the US and Dexcom One in the UK and front office changes at Beyond Type 1 and Vertex. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about DEXCOM*Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast. Along with the Device Library, providers can receive help with ordering and prescribing the devices for their patients using the Prescription Tools feature on the website. The Prescription Tool directs the user to a guide providing accurate up-to-date information on the necessary steps for filing a prescription and ordering the device for the patient. DiabetesWise Pro has plans to update the tool to include details on the approval of devices for patients based on insurance type. DiabetesWise Pro website features for use in clinic include: With this new resource, there have also been enhancements to the patient-facing website at DiabetesWise. Newly approved devices have been added and there are now Spanish-language versions of the Check-Up and Device Finder. Dexcom ONE is getting a big roll out in the UK. We’ve talked about this a couple of times in the past.. it’s the same Dexcom technology but a bit pared down and at lower cost. This news comes as the National Institute for Health and Care Excellence (NICE) announced new guidance for adults and children managing Type 1 diabetes. NICE now recommends that adults with Type 1 diabetes be offered a choice of glucose sensors. G6 is already offered there and the G7 will be as well, but this is about national health service coverage, and the Dexcom One is the only system under consideration there. XX https://www.statnews.com/2022/04/05/douglas-melton-noted-stem-cell-researcher-leaves-harvard-for-vertex-to-create-diabetes-treatments/ On this week’s long format episode, Laurie Harper shares her story… Laurie was diagnosed as a toddler back in 1955. She’s in the Joslin Medalist Study and talks about the difference this incredible group is making. Next week you’ll hear from World Champion Kayaker Sage Donnely who was diagnosed with type 1 at age 3 when she’d already been kayacking for almost a year. | |||
| 21 Mar 2023 | "The most options possible" - Tandem Diabetes plans for a second integrated sensor and a smaller pump | 00:43:39 | |
When the FDA cleared the 3 FreeStyle Libre 2 and FreeStyle Libre 3 (iCGM) system sensors for integration it meant a big leap forward to interoperability. For the first time in the US, insulin pumps can work with two different sensors.. Libre and Dexcom. This week, Stacey talks to Dr. Jordan Pinsker, medical director for Tandem Diabetes Care, about the upcoming Libre integration, the Mobi pump that's in front of the FDA right now, and much more. Dr. Pinsker has extensive experience with automated systems – he’s been there since close to the beginning and we talk about the long process to bring them to market, how they’re changing lives and what is still yet to come. More about the Libre approval: https://beyondtype1.org/freestyle-libre-aid-clearance/ More about Dr. Pinsker: https://www.tandemdiabetes.com/providers/bio/jordan-pinsker This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Please visit our Sponsors & Partners - they help make the show possible! Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com
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| 04 Mar 2025 | T1D, Connection, and People Magazine: Elise & Zach share their story | 00:31:09 | |
A story from People Magazine was all over my feed in February.. you may have seen the headline: "Young Couple with Diabetes Meet Online from 3,000 Miles Away." It’s a very cute story, but it speaks to the larger diabetes community – issues of connection, positive depictions of T1D in media, and the idea that googling diabetes doesn’t have to bring up depressing or outdated medical advice. I’m talking to Elise and Zach about the rest of their story. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Chris Dudley's basketball camp here More about Clara Barton camp here Join us at an upcoming Moms' Night Out event! Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections. | |||
| 20 Apr 2021 | "If You Can Dream It, You Can Do It" - Don Muchow Ran From Disneyland to Disney World with T1D | 00:39:36 | |
This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class! Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already thinking about another incredible goal. In our Innovations segment, a seven day pump inset? And some of our favorites have a little fun with a donut demonstration. Stacey mentioned a new link for Dexcom and Medicare this week. Find that here. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below
Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27 This week Don Muchow just finished an incredible run from California's Disneyland all the way across the country to Disney World in Florida. diagnosed with type one as a child, Don wasn’t an athlete in his early 40s. He decided to try working out but then he got some bad news. His eyes were in trouble.
Don Muchow 0:47 It was like a punch in the gut to get that laser retinopathy treatment after I had made the decision to be healthy. And I made myself a promise that if I could just have a do over, I will do it over and I just kind of not looked back since then.
Stacey Simms 1:06 He’s definitely not done. He’s 59 and he has yet another big goal. I'm so excited to share his story in our innovations segment, a seven day pump inset and some of our favorites. have a little fun with a doughnut demonstration. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new welcome. My son was diagnosed with type one back in 2006. Right before he turned to my husband lives with type two diabetes. I don't have any type of diabetes. I spent my career in broadcasting and that is how you get the podcast. My guest this week. Oh my goodness is Don Muchow. He made national news last week when he finished a coast-to-coast run. He calls himself a type one diabetic extreme ultra runner and Iron Man boy is he ever I wanted to read you a couple of highlights from Don's website. So here's what he did before the accomplishment we're going to talk about today in 2019, who ran across Texas he holds the fastest known time record for doing that. 2018 he completed relay Iowa which is 339 miles in 2018. Sioux City to Dubuque first ever solo finisher of the longest us relay first ever T one D finisher 2017 capital to coast race 223 miles, Austin, Texas to the Gulf of Mexico first ever to Indy solo finisher, and on and on and on, I will link up Dan's website over at Diabetes connections.com and in the show notes, and do yourself a favor because that wasn't even a quarter of the list of stuff that he has accomplished. And as you heard, he was not always an athlete. His story is even more amazing. When you find out that when Don was diagnosed in 1972, he was told no exercise too dangerous with type one, not even gym class, he was not allowed to take gym class, I will let Don tell you how he overcame that type of thinking to become the incredible athlete that he is now and he has great advice for those of us who want to be more active but are not ever going to run across Texas, let alone across the country. And that is coming up in just a moment. But first Diabetes Connections is brought to you by Dario. Bottom line you need a plan of action with diabetes we have been very lucky that Benny’s endo has helped us with that, and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of A1C within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my Dario.com forward slash Diabetes Connections for more proven results and for information about the plan. Don, thank you so much for making some time with me. I really appreciate you coming on.
Don Muchow 4:26 Thank you very much. I'm happy to be here.
Stacey Simms 4:28 How are you feeling this morning?
Don Muchow 4:29 Oh, hungry and tired. Oh
Stacey Simms 4:33 my goodness. You know, I'm not sure where to begin because there's so much to your story. But I guess let's start with my biggest question. And I always have this for people who are ultra athletes and do these incredible incredible feats. Can you tell us why you would do something like this? When did the idea enter your brain that this was a thing you wanted to do?
Don Muchow 4:55 We started thinking about the run about three years ago. And our primary objective was to get the word out to other type ones who are living with the disease. That while exercise can be justifiably scary, because low blood sugars can lead to seizures, and consciousness, even death, the long term complications from avoiding it entirely as I had done for the first 30 or so years, since my diagnosis are really pretty awful, I wouldn't compare it to the remote possibility of a trip to the ER for incredibly low blood sugar. And it's a snake in the room that you have to face. You can't ignore it, and you can't freak out about it.
Stacey Simms 5:42 You said we and our there what Tell me about your team. Before we go any further.
Don Muchow 5:47 I often tell people somewhat jokingly that I just do the running. And my wife and crew chief Leslie does everything else. That's actually pretty close to true. I started calling her mission control. Once we got started, we got closer to the Space Coast.
Stacey Simms 6:01 That's great with a run like this. And well, I want to talk about, you know, other feats that you have done. And you already mentioned, you went so long without regular exercise. There's so much to this story with this run. What did you think because you started this mean, COVID really threw you for a loop, we'll get into that. But when you were starting out what was the plan,
Don Muchow 6:22 we had spent probably about a year getting the route laid out so that it was safe enough to do, we were conscious of the fact that some people might want to do that same route again. And the last thing we wanted was for someone to die trying. When we started thinking about sort of putting feet on the ground, we went out and scouted the route in the car and made sure that I was comfortable with a train and with the route that I would be running. And we still run into obstacles, but it sort of helped us get our mind around the idea of what it would be like to run across the country. Wow.
Stacey Simms 6:58 What kind of things do you look for when you're scouting it out? Is it roads? Is it towns to be able to drive on?
Don Muchow 7:05 You're right on all three of those. We wanted a route that I could run that the van could drive as well. Wouldn't be much use, especially with type one, if I ran 100 miles of trail in Arizona, and there's no way to find. So we wanted a route with wide shoulders, relatively low traffic that the van to drive most of when we were in metropolitan areas that had bike trails. That was the one exception where we just kind of let me run on the trails because they had always pop out to CBS or gas station or something like that.
Stacey Simms 7:39 And why Disney to Disney was that geographic? Are you a fan?
Don Muchow 7:43 I am a fan. My wife and I are both big fans. Disney has been credited for saying something about how If you can dream it, you can do it. And that seemed like a sort of an anthemic statement, but really the the actual route from Disney to Disney was a bit of a happy accident. We originally planned to run from basically from LA to the Space Coast. And a friend of mine said, Oh, well, so you're running from Disneyland or Disney World. And I you know, I didn't have that idea. But that is brilliant. We decided to switch it up just a little bit to do the Disney Disney piece inside the transcontinental run.
Stacey Simms 8:18 Very cool. Oh, that's great. So you started out I remember when you put your feet on the ground and got going. And at that time COVID was not really a thought. When did you realize that you were going to have to make some changes
Don Muchow 8:31 that occurred to me in I think it was about end of the second week of March of 2020. When we were making a restock stop, and big spring, Texas, and we stopped at Costco and they were out of water and out of practically everything else we needed. And we began to get Inklings that it was going to be impossible to resupply the van and we were looking at lockdowns in my hometown. And we thought about, okay, well can we make it to Dallas. And if we did, you know, there will be facing an empty refrigerator. So we decided to kind of be planful about how we were going to sort of pause things and pick it up when it got safer to do so. We had to pause on March 22 or 24th. I don't remember exactly what we picked up again on September 24. ran for about a month and had to pause again because the numbers east of Texarkana were looking bad. And then we finally resumed the last third of the run and on March 2 of 2021 and made it to the coast.
Stacey Simms 9:40 Wow. And pardon my ignorance here when you're marking an event like this or a feat like this. Is it days, hours just miles done? Are there differences in how you market and how if somebody's officially marking it
Don Muchow 9:52 mentally I'd look forward to the next big town. Whatever comes actually the next town of any sort. You Usually what that means is, you know, gas stations, lodging, that sort of thing. And when you're out there in the middle of nowhere, that takes on a special significance. In terms of documenting the run, we originally set out to document it more thoroughly when we thought that there would be records that we might bump up against. When we found out that on this particular route that no one had actually done Disney the Disney before we relaxed a little bit, but still kept marking our progress, we have a live GPS tracker that kept track of where I was, every moment, I have two GPS watches that have my workouts recorded. And we also have the recommendation of an organization called fastest known time, timestamp selfies next to unique landmarks. So in terms of marking our progress, very, very hard to cheat on a route like that if you have to be at a certain place at a certain time, and the only way you can get there is to run. So we documented our progress. using those tools. I
Stacey Simms 11:03 guess what I also meant was in terms of the time break that you had to take because of COVID do you count just the time running then for your you know, the way you clocked it,
Don Muchow 11:13 we did taught up the time total time we spent running believe between the two Disney's It was 88 days, and it was 90 coast to coast records organizations, especially fastest known time, care about the entire time it took you especially if there's no starting gun, that's typically where people like fastest, sometimes calm pick up. It's elapsed time. So if you're visiting the bathroom, you're still on the clock. If your technique picking the lunch break, you're on the clock, we realize that while this might be the fastest known time from Disney to Disney, since it's the first, it'll be a record that's easy to break for anyone that serious about it. It really will only take them about three months to do it at my pace, and many people are faster than I am. So we take comfort in the fact that we drew some attention to type one and exercise. And that this was a bit of a bit of a media event because it was the first Yeah, definitely helped us get the word out.
Stacey Simms 12:10 And I don't mean to take anything away from it. I'm just trying to figure out so do you have to count it on February to April? Or do you just count the time running? I guess would you have to count the COVID break?
Right back to Don answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen and our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Full blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice very very low blood sugar can be very frightening. Which is why I'm glad there's a different option for emergency glucagon it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to use with no visible needle. You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon comm slash risk. Now back to Don. And he's talking about how the timing of this amazing run is recorded.
Don Muchow 13:21 Personally, I count the whole time. It is what it is.
Stacey Simms 13:24 I have a few more questions about the run itself. But I want to go back and talk to you about you mentioned the 30 years you spent not really exercising, it's hard to believe but when you were diagnosed, you were told it was too dangerous. Is that really a factor said tell us about that.
Don Muchow 13:41 I was diagnosed in 1972. And people who are considerably younger than me may not realize that glucose meters weren't invented or weren't publicly available until the early 1980s. My first glucometer was this massive brick shaped thing that I got, I think it was either 1982 1983 prior to that, really the only way of telling what your blood sugar was not what it is. But what it was, was with a urine test and all that really told you as past history. It was justifiable given the circumstances, that if there was no way other than a trip to a hospital to have a glucose test done, that if you couldn't tell how low your blood sugar was, and you were feeling awful and faint, and you know, on the verge of passing out that maybe it wasn't so good to do things that cause a drop in blood sugar problem was that, you know, after 30 years, glucose meters had been around for a while at that point. And I didn't change the advice I was following. So that's on me. But I think a lot of people even with glucose meters are justifiably scared that if they can't stay on top of a severe drop in their blood sugar that maybe this is not for me to do. We face challenges during these long runs. And because I'm type one, like a lot of you out there, you know I gotta face the same challenges and Many of them aren't easy, but I just keep thinking about the turn, I almost took down the road to being visually impaired and having circulatory problems. And I'm just so glad that I went ahead and face those risks. Wow.
Stacey Simms 15:15 Do you remember what it was that made you think I've got to move forward with exercise? I've got to change this. Yes, please, please tell me what you answer that the first thing you did wasn't a marathon.
Don Muchow 15:27 Not a marathon. It was in 2004. I had gone to see my retina specialist who had been monitoring proliferative retinopathy and my left eye. And it had come to the point where he recommended a laser retinopathy treatment, I think those are deprecated. These days, I think they use an anti inflammatory injection now. But back then the recommended treatment was laser treatment of the blood vessels in the eye that were leaking. And it left me with a blind spot. And I asked my retina specialist at the time, well, what does the future look like for me? And he basically said, Well, I'll have more blind spots if you don't do anything. And I had already made a decision that year, that after finding out was short of breath going up the stairs, that I wanted to be healthy, signed up for 5k turkey trot, and it was like a punch in the gut. To get that laser retinopathy treatment. After I had made the decision to be healthy. I made myself a promise that if I could just have a do over, I will do it over. And I'm just kind of not looked back since then. I actually have a little bit of a concern that for many years that once I got to the point where I finished a run across the US that I would turn around and go Okay, now watch, and and not run anymore. But I've taken up swimming. So hopefully that'll help.
Stacey Simms 16:51 And I'm trying to do the quick math, you're done. But how old? Were you in 2004?
Don Muchow 16:55 I think I was in my early 40s. I don't know the exact age, I think it was 42. But I'm not sure about that.
Stacey Simms 17:02 I only asked because you didn't change your mind when you were 22. Right, you didn't start exercising at a super young age. I think 42 is still very young. But it's not, you know, you're not a kid, if you're making decisions a little bit later in life. And the results are phenomenal. I mean, I just can't believe that,
Don Muchow 17:18 I actually think it was something of an advantage to start once I had a gray beard because I have lower expectations of myself. And I think as you push the distance, it's good to remember that not everything in life is achieved by going all out. I progressed slowly to longer and longer distances, probably around 2011, I had gotten used to running marathons and I realized that wasn't getting any faster. There was an ultra, I think it was a 50k in Fort Worth that came up on the radar. And I thought to myself, well, that's only five miles longer than a marathon. Let's try it. I did find it. There were only 400 people in that race that signed up. I think it was like 25,000 or something and signed up for the marathon, but only 400 for the ultra. And it was kind of a nice feeling to realize that, you know, the bulk of the work was behind me. And really now it was just seeing how far I could go. And I began to realize that, you know, if I sort of run my own pace, which is relatively slow, that pushing the distance was a more interesting challenge to me than trying to run faster and risk injury.
Stacey Simms 18:27 By the way, as a mom, I have to say, is that a Dexcom? Beep You good? We need to take care of any.
Don Muchow 18:33 We're good. I have lunch just a little while ago. So it's probably complaining about that.
Stacey Simms 18:39 I'm sorry to be if that's a rude thing to say.
Unknown Speaker 18:41 No, no, no, no, it's we're all tribe.
Stacey Simms 18:45 Thank you. So let's talk. I have some questions from my listeners. But let me ask you a couple more Disney questions. There's this great video of you finishing at Disney World. What was that like? And did you know that they knew you were coming and we're going to be celebrating like that?
Don Muchow 19:00 I knew absolutely nothing about it. We actually were talking just before at our last aid stop before we ran up to the Magic Kingdom about what would happen when we got there. We had thought okay, well, you know, we don't want to serve the Disney guys, we, you know, we realized that's private property, not officially part of the run because we had made a rule for ourselves that we would not run on private property. And when we got to the contemporary zero security guard said, Oh, are you the runner? And my first thought was, oh, guy, we're gonna get escorted off the property and they knew we were coming. And I said, Yeah, I'm the runner. And he said, Okay, well, hang tight. We got some friends waiting for you at the gate, ran over to the gate. And there were probably two or 300 Disney cast members waiting, all cheering. There were people lining the run up to the gate. And when we got there, most of aliquot the president of Walt Disney World presented me with a custom Mickey Mouse cat that said Disneyland The Disney World and escorted me into the park and said, have fun, do what you want to do, we'll pay for it. Wow. And I had an ice cream cone. And I wrote, it's a small world. And I had 50 more miles to go. So I went back and finish running. But it was the most magical time in the world. I just can't thank those guys enough. That was this awesome surprise party.
Stacey Simms 20:20 Do you know who told them? I mean, we
Don Muchow 20:22 all knew your guy, some sneaky person, I don't know. Actually, I actually have many, many months ago at contacted Disney media relations to see if anyone had run from Disneyland Disney World. And then they kind of went radio silent for a while. I suspect that what happened was that they waited for a while to see if it looked like it was going to finish. And then when it looked like it was actually going to happen. They're like, Okay, this is something noteworthy, and let's be there, and let's make his dreams come true. It was amazing. Finish the second finish line on the coast and Indialantic was almost as awesome because I really mostly expected my bio dad and his wife to be there, my brother and his wife. And you know, we'd all take some selfies and celebrate the fact that we got there. And there was a bit of a crowd and make the deputy mayor of Indialantic was there and had swag and other things. If somebody brought me a Red Bull. And I needed that. So it was it was pretty awesome. To have the two finish lines was kind of a bonus.
Stacey Simms 21:26 And just to be clear, when you said after Disney World you had 15 miles to go. Is that the same day that you did this? Yes,
Don Muchow 21:33 yes. The same day. Our plan was to stop in Kissimmee. Right at the turn to 192, which has toward the coast. I think we finished that day at 31 miles. You know, originally, when we didn't think there was going to be much of a fuss at Disney, we were hoping to do more like 3436, something like that. But we actually got in about 50k that day, and I was pretty happy about that.
Stacey Simms 21:57 The next question from my facebook group is about how did you manage blood sugar along the way, I know there must have been lots of ups and downs and things like that. But can you give any advice especially for the athletes who are listening in just on you know how you manage such a, an endurance feat?
Don Muchow 22:15 A couple of things. One is that it's important to be aware that while cardio can make you insulin sensitive, pushing it to the point where stress becomes a factor, the stress hormones can actually reverse that effect a little bit and make you a little more insulin resistant. I like to tell people that that's your body pumping you full of hormones and energy so you can run away from the cheetah. So that's an effect to be aware of my wife, Leslie, who managed all the food, made sure I got enough calories every day did a good job of watching my sugars on Dexcom follow. So generally speaking, when I got to the van, she knew what kind of fuel I needed and had it ready. In terms of using the settings on my T slim Tandem pump, I had to run it in sleep mode most of the time, because I was fairly insulin sensitive during the day and unless blisters or heat were bothering me, the biggest challenge was keeping my sugar up. I found that even in exercise mode, it was those teeny little too much. So I would say if you're going to run 100 milers, 200 miles, that sort of thing. Think about sleep mode, and not just exercise mode. That was something we had to do.
Stacey Simms 23:32 The same person wants to know how many pairs of shoes you went through.
Don Muchow 23:37 If you count just the ones that I wore out, it would be seven, I had a custom pair of shoes equipped with velcro all the way around the top and sand Gators. Same with the ones I use in the Mojave that I put put on for the beach. So that would be the eighth pair. So eight pairs of shoes, including the ones for the beach.
Stacey Simms 23:59 Oh my gosh. And if you could briefly and I will I will get you out of 1030 I promise. Just a couple more quick No worries, we
Don Muchow 24:06 can run a minute or two. Okay. Okay, NOT HAVE NOT HAVE NOT a half hour
Stacey Simms 24:09 Oh, no, no, no, no. Um, another question here is what did your training schedule look like? How do you train for something like this,
Don Muchow 24:17 um, I have a hilly 50k route that I typically do training runs on. I borrowed it from some cycling friends of mine who wanted a route with a lot of hills in it. And I typically try to go out and run that in every kind of weather that I could. During training, I would take I would take the rest day in between training days, but every once in a while I would run three or four days in a row, you know, do the same 50k route. Generally speaking, I didn't train above a 50k distance because I didn't expect to do more than 35 miles a day on the transcon I'm for Texas. We train a little bit longer per day. And for Iowa, we were training like 15 miles a day. But there's just no way for me that I could keep that kind of keep up a distance beyond 35 miles a day for 100 days.
Stacey Simms 25:15 When you're doing something like this, do you try to eat the same stuff all the time? Do you? Are you able to bury things? How does that work for you,
Don Muchow 25:23 um, I tend to gravitate towards some things that I liked. We also paid a lot of attention to trying to get things into me that had protein so that my muscles could rebuild a little bit better overnight. So we ate a lot of hummus, a lot of yogurt, chicken salad, that sort of thing. I got to a point where I didn't want hummus. Yeah, we ran out. We ran out, we ran out a chicken salad before I hated it.
Unknown Speaker 25:54 Yogurt
Don Muchow 25:57 with I'll see hydrated attempted to taste kind of pasty to me. But we would start putting those little mandarin orange cups that you can get at the grocery store, we would put those into yogurt to make it a little a little wetter. And it was a great fuel source. I mean, it's protein, fat, a little bit of sugar. So we I had a lot of that. If I needed carbs, we you know we'd throw in a Oreo or another butter or something like that. But we really paid attention to trying to get the calories and to me. I went through about probably 4000 5000 calories a day. Wow, if any less than that I was losing weight.
Stacey Simms 26:39 Did you did you have to treat lows along the way a lot of them or were you able to kind of manage by what you're eating. And with the sleep mode, as you said,
Don Muchow 26:49 I'm most mostly we managed by eating in sleep mode. We didn't run into a lot of lows on this run. And by that I don't mean to suggest that we had a lot of highs. On the days that were upwards of 35 miles. I tended to have more persistent highs until I went to sleep. And then of course my sugar's dropped very rapidly at that point, we had had previously had a run in with a severe low back in 2019. When I ran across Texas, there was a section between Kermit and Odessa that was very stressful to me. And my sugars had run high the whole day as a 41 mile stretch. And I basically kind of burned up my glycogen was under fueling because my sugar was running high from stress. And then that night when I went to sleep, my sugar dropped to 20. And for anyone here who's not from the US, that's probably one millimolar something very close to that, and, and was wavering in and out of consciousness. And my wife had a glucagon rescue kit that she used on me and I God knows how many carbs for my sugar, what came up. We learned to be careful about that and pay a lot of attention to whether the highs were due to over fueling or stress. And if it was stress, we treated that very differently than we did. You know, overeating. Stress, we typically found that dosing Just a little. And actually taking on food even though my sugar was high, was the best way to get my body to sort of calm down. Otherwise, I would just run high until I fell asleep and then I dropped like a rock.
Stacey Simms 28:38 I'm laughing with this question, because we debated in the group. But this question came up. Ask him what he's going to do next. I do have another?
Don Muchow 28:50 That's a good question. Um, I have been, I've had my eye on solo swim around keywest. That's not as amazing as it sounds from a type one perspective. My good friend Karen Lewin was actually the second type one to solo swim around keywest. I don't remember the name of the first one. So but I would be joining a club of people I'd be very happy to be a member of that's a 12 and a half mile swim. During the COVID pause, I switched to swim training because I needed to do something to break up the run training a little bit it was getting monotonous without knowing when I started again. Yeah. So I've got that swimming on my mind to do after this. But at the same time, I think I need to take some time off, recover. Just relax and sort of let my body sort of recalibrate to what normal life is like.
Stacey Simms 29:46 And I have to ask you mentioned they said Disney World. Come on in and do whatever you want. It's on us. He had an ice cream cone and you did small world, small world on why
Don Muchow 29:59 I have some real Very pleasant memories, from my childhood of riding that ride. It's always been there. And it's quiet. And one of the things that I found on the out on the run was that I would get something a friend of mine called it sympathetic nervous system overload, basically being two or three feet from traffic. for hours on end, I got to the point where I was kind of jumping at loud noises. So we really loved It's a small world. And that was one of the reasons we chose that. And it was our favorite ride anyway, so
Stacey Simms 30:38 I love it. Hey, before I let you go, any advice for people listening who are you know, they're running five K's or they're maybe just starting exercise with type one. And, you know, not planning to do what you've done. But a little nervous, but a little excited about exercise. You know, what do you tell people like that.
Don Muchow 30:59 Um, if you have a bad day, it's just a bad day. Don't kick yourself for mistakes. Don't kick yourself for things that don't go the way you expect, um, look at it as a chance to learn something. Even bad blood sugar Day is a chance to alter your plans, change something in the way that you manage your sugars during exercise. But above all, don't give up. I said
Stacey Simms 31:23 that was my last question. But something else just occurred to me, Don, have you ever gone back to the doctor, or anybody from kind of your previous life?
Don Muchow 31:32 I have. And things have been stable so far, we're going to kind of thoroughly check things out to make sure nothing's changed after the run. But we'll see how it goes.
Stacey Simms 31:42 Yeah, but they've got to be so excited to see what you've done.
Don Muchow 31:46 My endocrinologist is pretty excited. I'm hoping to see him here in about a month or so. And we'll check in with each other and see what we can tell from the numbers. Well, Don, thank
Stacey Simms 31:59 you so much for spending so much time with me. I really appreciate you coming on. Congratulations. And I got to tell you, I think what you should do next is is rest stop and put your feet up for a little while. But I know that's not going to happen. But thanks for being here.
Don Muchow 32:11 That sounds like a great idea. I'm happy to be here. And thank you so much for your time.
Unknown Speaker 32:20 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 32:26 More information about Don in the show notes or Diabetes connections.com linked up to all of his amazing accomplishments. I'm still a little speechless. What a thing to do just to think of doing these incredible goals and getting them done. I know that people like Don will say, well, it's just a matter of training, and then you put one foot in front of the other. But my goodness, it's pretty amazing stuff. Innovations coming up in just a moment. We're gonna talk about what looks like a pretty big move from Medtronic in terms of longer where pump in sets. But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. You know, why not? It's not as though you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G6 continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes, and intensively managed insulin, you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com backslash g six dash Medicare, you're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more again that link I'll put this in the show notes too. It's dexcom.com backslash g six dash Medicare.
Innovations this week, one medical story and one donut story. Let's do the medical one first, interesting news from Medtronic, they have launched a new line of what's been called insulin infusion hardware. They've launched this in Europe, that basically doubles the time you can wear it so you know, if you were an insulin pump, you know, as you listen, you have the inset on your body. It's the way a tube pump will connect to the Omni pod has this too. It's just a little different cuz it's kind of hidden in the mechanism. But they all have this way that you insert a needle the needle comes out and the catalyst is under the skin with the adhesive and the connector part above the skin. I used to describe it looking like a tiny nicotine patch with a bump on it. They last about three days. You're supposed to change them every two to three days to avoid infection and scarring and clogging and that stuff, but Medtronic says that they have one that will last seven days. And we talked about this when I spoke to Medtronic Sean Salmon back in oh I want to say October of last year was the fall of last year. He mentioned this. He said that the tubing set is what he called it would go from two to three days to seven days. And he said the way they were doing that I'll link up the episodes you can listen again, is that it has to do with the way that they filter insulin. Through the inset. He says that the preservatives in insulin are what causes the site reactions and the clogging and that kind of thing. And they found a way, you know, obviously, it's proprietary didn't go into too much detail. But they found a way to work around that. This is really interesting. I'm surprised this didn't make a bigger splash. This is a huge deal. If it works as well as we would hope to be able to where your pump on your body for longer without scarring or issues or that kind of thing. So European friends, if you're using it, you hear about it, talk to your endo about it, let us know how it goes. And we will wait for more information on the Medtronic seven day inset. And the other story I wanted to bring you in innovations is the I don't know if it's a medical innovation, but it sure could be helpful that fabulous people at TCOYD take control of your diabetes released a video that many of you sent to me and it was just fantastic. I wanted to share it, it is how to eat three donuts and stay in range. And this is Dr. Jeremy Pettis, Dr. Steve Edelman, and they basically have a demonstration. But it's really a kind of comparison of how they would each do it. And they show you they eat three donuts they take you through, they're using a Dexcom to kind of show the results. It is a Afrezza the inhaled insulin, kind of versus timing of traditional insulin, I won't spoil the whole thing. It's fun to watch, I think they do an incredible job as always, of breaking down kind of complex thoughts and making them user friendly, I'll call it and they have such a great sense of humor, I really, really enjoy their stuff. So if you haven't ever watched any TCOYD videos, they have a ton of them. And their conferences are always a really good time too. So I will link that up in the show notes. But I would imagine you could Google how to eat three donuts and stay in range. Probably it'll pop up pretty easily. Before I let you go, we did have our quarterly endocrinology visit. I always thought about putting it off because there's really nothing going on. Right now we're kind of in a groove or just re entering some parts of life. Knock on wood is you're listening this my whole family is vaccinated. Benny is two weeks past his I think I'll be past two weeks past my last one when this episode goes live. Yeah, it will be. And Benny has really re entered more of the real world very recently, as I've mentioned before he got a job. He's back with the wrestling team. He's not yet going to school. He's staying virtual, but he's back on the high school team. And you know, we've had some blood sugar issues as you would expect whenever you're going back to a sport after a long time not but he's managing them really well. So that I only share the endo appointment because he of course, we've known this guy for 14 plus years. He's taking his family to Disney World for the first time. And that's later this year. And that's what we spent mostly we've been talking about.
You know, my tips and tricks for Disney World, we'd have that episode last week, but his kids don't have type one. So it wasn't that relevant anything to have to listen to the podcast episode. And I realized I haven't been to Disney, you know, since COVID. Certainly. And I know that there have been some changes. So I'm fascinated to see that apparently, Fastpass plus has been eliminated during COVID, which was like my lifeblood when I go there, you know, I get this well in advance, listen to how excited I'm sounding just talking about it. But I get him in advance and we refresh 600 times a day and get all the rights we want. I mean, it's really, there's a science to it a little bit of madness to it, too. But it sounds like I'm gonna have to relearn everything. Because it sounds like they're gonna make a lot of changes when they you know, they really start opening up more, although disney world has been open really for months and months and months. But you know, when they start letting the bigger crowds back in, so that was fun. I love our endo. I feel really fortunate that we have the relationship with Him that we do. And the visits are now me kind of sitting in the corner. You know, me I stay, I can't stay quiet. But I do very little. It's really just a conversation between him and Benny and I feel really fortunate about that. Alright, classic episode coming up later this week. As always, thank you to my editor, John Bukenas, from audio editing solutions. Thank you very much for listening. Hey, do me a favor, share the show. If you enjoy it. You think this is good information. If it's valuable or helpful to you in any way. Please tell somebody else in the diabetes community about it. Word of mouth is the best way to spread the word about podcasts and I really appreciate that. All right, I'll see you back here in a couple of days. Until then, be kind to yourself.
Benny 39:35 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.
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| 18 May 2021 | "It's Actually Very Fragile" - Keeping Insulin Cool in Hot Weather | 00:37:59 | |
It's getting hot out there and it's vital we keep insulin at the right temperature. However, that's something health care providers say isn’t always front of mind. Stacey talks to Diana Isaacs, a Clinical Pharmacy Specialist and a CDE at the Cleveland Clinic. We’ll get the real deal about insulin temperature and suggest some ways to keep your supply safe. In Tell Me Something Good… glamorous inspiration and a grateful mom – plus babies! And a big anniversary. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out VIVI-CAP www.tempramed.com - use promo code DIACON21 to save 10% off your purchase! (promo code valid through 8/31/2021)
EPISODE TEXT HERE... Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below
Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:20 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26 This week, it's getting hot out there a conversation about keeping your insulin at the right temperature. It's something healthcare providers say isn't always front of mind when we're troubleshooting tough diabetes days.
Diana Isaacs 0:39 Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected.
Stacey Simms 0:55 Diana Isaac's is a Clinical Pharmacy specialist and a CDE at the Cleveland Clinic, we'll get the real deal about insulin temperature and suggest some ways to keep your supply safe in Tell me something good, glamorous inspiration, a grateful mom and babies plus a big anniversary. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. You know, My son was diagnosed 14 years ago, just before he turned to my husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I live in the southeast us in North Carolina. So it has been warming up for quite a while here. But pretty much all over the United States. We are seeing the warmer weather hot summer is coming. Shout out to our listeners in Australia and elsewhere in the world where summer is not coming please save this episode for a few months. But in addition to the advice here, I've got a thread going in the Diabetes Connections Facebook group about what to use not only to keep insulin cool, but to keep diabetes gear holding tight in the summertime CGM and pump sites as you know, tend to slide off in the wetness sweat. So please check that out. Lots of good suggestions. And as I mentioned, in my book, the world's worst diabetes mom, we really like stay put medical to hold stuff on. But I'll tell you in a pinch Benny will just slap a big waterproof bandaid over his Dexcom I really like the clear tegaderm stuff, but I mean he doesn't care yelled us anything and you can find that in a CVS. So if you're off to the beach and you don't have anything, it really comes in handy. Most of the rest of the stuff that's being suggested in that Facebook group thread has to be special ordered either Amazon or the website from the company that makes it okay quick housekeeping note, you will hear my guest mention a product called VIVI cap in this interview and I have a promo code for you if you want to buy it you'll get a discount if you use the code, but I'm not being paid by VIVI cap. Although we are talking about doing something together in the near future. My guest is not a paid consultant for VIVI cap. She really likes the product and they know that and they helped coordinate this interview that said this conversation is about a lot more than one product. So whatever you use, keeping insulin at the right temperature is really important that promo code for VIVI cap is DIACON21, which gets you 10% off the product@temperment.com I'm pretty sure you're not listening with a pen. So I will put that in the show notes and on the episode homepage at Diabetes connections.com. My guest this week is Diana Isaacs, she is a Clinical Pharmacy specialist and the remote monitoring program coordinator at the Cleveland Clinic Diabetes Center. She was the 2020 at CES Diabetes Care and Education Specialist of the year and a Cleveland Clinic. She does have a pretty unique CGM training program. And you'll hear about that during the interview as well. But first Diabetes Connections is brought to you by Dario health. And we first noticed Daario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Daario offers even more now, the Daario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Diana Isaac's welcome. Thanks so much for joining me. I'm really interested to talk more about this. Thanks for being here.
Diana Isaacs 4:46 Great. Thank you so much for having me.
Stacey Simms 4:48 Or it is getting hot. I know that not everybody lives like I do in the south where it's been hot for a while. But let's start by talking about what you tell your patients.
Diana Isaacs 4:58 Yeah, so many people don't really The storage and the storage of insulin is so important. It's actually very fragile. And if it's not stored correctly, it actually most commonly it loses its potency. So it ends up you know that 10 units of insulin that you inject doesn't work like 10 units to work like seven units, like six units, you just don't know exactly, it's just will not be as potent.
Stacey Simms 5:18 When we're talking about storage of insulin. I know if I leave it in my hot car, and it gets to be, you know, above 110 degrees, it's going to lose its potency, but day to day, just kind of throwing it in the bag or having it with you, how do you need to store it,
Diana Isaacs 5:33 it's recommended any unused insulin pens or vials or cartridges should actually stay in the refrigerator, once it's been opened, then typically, it's good at room temperature for either 28 days, or some of the newer insulins are good up to 56 days, when it goes above that room temperature, that's when you really can't guarantee the potency anymore, and that's when it can break down and it is not going to be as effective. And in terms of Well, what's the danger of that? Well, a you really have no idea how much you're giving yourself. Because like suddenly, you know, what you usually give yourself isn't going to work as effectively. And you know, the real risk or the big risk would be a complication like diabetes ketoacidosis, where you're just not getting enough insulin and that could be you know, a life threatening complication,
Stacey Simms 6:23 what is considered room temperature
Diana Isaacs 6:25 78.8 degrees, it should be it should not go over 78.8 degrees Fahrenheit or 26 degrees Celsius,
Stacey Simms 6:32 you mentioned that the newer insolence can be out of the fridge for 56 days which insolence.
Diana Isaacs 6:37 So specifically, the ultra long acting like tresiba, insulin degludec, and then toujeo, which is insulin collaging. You 300 those lasts a little bit longer at room temperature.
Stacey Simms 6:49 Do you have any idea why I know those are made up a little differently from like, you know, Lantus or levemir.
Diana Isaacs 6:54 Yeah, the you know, they're just, they're made a little bit differently, which allows them to act longer in the body. And that's how they were studied to show that the potency, you know, still really maintains a fact at that point. And I mean, it's good also, because there's larger pens that holds more units. And so you know, that way a person, if they needed it for 56 days could have that the reality is a lot of people with the doses that they're on, you know, will go through a pen, you know, much faster than been 28 days. All right,
Stacey Simms 7:26 we're gonna do some True Confessions here, because I gotta tell you, we have kept insulin a lot longer than 20 days. And we have, and again, I'm not a diabetes educator, and endocrinologist. So you know, I'm just telling you what we have done as you listen, not just for you. But for example, Benny had a vial of insulin, my son that he took in and out of the fridge at school for almost an entire year, it was like a backup. So he would use it if he needed it. And when he was in elementary school, he used like, drops of insulin. It's not like now and he's a teenager. So we would put it in the fridge at the beginning of the school year, and then he would like take it out, use it, put it back in, take it out music, put it back in. Now, I know that's not advised. But it does work. So I mean, how delicate really is insulin, if we can get away with doing something like that.
Diana Isaacs 8:08 So Oh, man, you're burning my ears as a pharmacist? Oh, I hear that. But yeah, I mean, we know that that is reality that people are doing that. I think, you know, as long as it has maintained its room temperature, or refrigeration, probably a lot of insulins have at least close to the near potency for longer. It's just it really can't be guaranteed beyond that point. Because how it studied, I think, where things become different, or when it's exposed to too much heat, like we know for a fact that when it's exposed to high temperatures, or direct sunlight, it mean it loses its potency almost immediately. And if you've ever had you know, the insulin just sitting in the sun and then try to inject it, I I'm willing to bet it would be different. It wouldn't it would not work as well.
Stacey Simms 8:53 Right? And I think with that example that I gave, it never got below the refrigerator temperature because it was out and in so quickly. But I give that example because I know people who once they take it to the fridge, they think that's it. And it's just it was probably out for less than three minutes.
Diana Isaacs 9:08 Yeah. So I mean, that's interesting, right? So it's still you use it, but right, it wasn't out as much. So obviously, it's not ideal. We can't confirm how you know that it's so potent, but it sounds like in your case it was I have seen a lot of situations though, where people use insulin for example, longer in their pumps, like usually we say to change it out, you know, every three days and an insulin pump and people go five days, seven days and a lot of people notice as they go further out from those three days that it seems like they are needing more insulin that it is losing some of its potency.
Stacey Simms 9:39 I will say one of the only times we had an I refer to it very scientifically, skunky insulin. The only time we had skunky insulin was we had come home from summer camp and had unpacked the car but we had not seen like one of the bags kind of worked its way into the corner. And of course that was the bag that had two vials of insulin and two or three days later in our house. Summer car. We this was years and years ago, we used it anyway, of course, it did nothing. It was like sailing, or it was really bad. So that was a realization like, oh, it really does get terrible.
Unknown Speaker 10:12 Yeah. All that precious insulin law. I know. I know,
Stacey Simms 10:17 well, once we know, it's been 14 and a half years, so it happens, it happens. What do you advise patients then to do I mean, obviously, we can change out pump insulin more often. But as you said, Nobody wants to waste precious insulin like that. What are the tips that you give people to keep their insulin cool in the summertime, whether it's in a pump in a vial, that kind of
Diana Isaacs 10:42 thing? Yeah, so I'm a really big fan of something called the Vivi cap. And this is actually can go over like, it can replace the cap of an insulin pen, and you put it on there, and it guarantees that it stays at room temperature, even if it's exposed to, you know, a really hot car, really extreme temperatures, that is something that I've really been recommending for my patients, because it's just, it's a simple tool. And that way, you don't have to stress about like trying to, you know, I see a lot of people trying to get ice packs and things and that, that's risky, because you could accidentally freeze your insulin. So some a tool like the vivie cap, I find is really, really helpful,
Stacey Simms 11:20 you want to take us through a little bit of what it does.
Diana Isaacs 11:23 Sure, basically, it replaces the cap. So essentially, you know, like, let's say you have a novolog pen, right that you're using for your meal time injection. So you would go ahead and you would take off the cap. And instead, you would go ahead and you would put this Vivi cap directly on it, and you would replace that. And then you honestly, you can just throw it in your purse, in your bag, or whatever. And when you want to be sure that the insulin, you know, let's say you were in extreme temperatures, it was in your 100 degree car, and you're not sure if this insulin is going to be effective or not, there's a button at the top of it, and you go ahead and you press it. And if that button becomes green, then you know that that insulin was stored properly, it is a safe temperature, and it is safe to be able to use it if the D button would turn red, that would tell you Oh, there was an issue, the insulin is not safe. Now the good news is the way it actually you know, through a thermal cooling mechanism is actually getting rid of the heat where the insulin is. And so it's saying, you know, keeping it at room temperature. And why this is important also is because a lot of other things out there will make insulin really cold or accidentally freeze it or just make a cold. And really once it's out, and once it's open, it should say every temperature and so this really ensures that it will happen.
Stacey Simms 12:52 That's interesting. So the V cap doesn't necessarily keep it cold. It keeps it like it doesn't keep it refrigerated.
Diana Isaacs 12:59 Right, it's keeping it at room temperature. So it's really meant for the pen that you're using you're actively using. You can throw this cap on you can put it on your long acting and your mealtime insulin, and you can go on a trip, you can go wherever do whatever and it will stay at room temperature.
Stacey Simms 13:17 Here's a dumb question. We don't use pens very often. So I'm curious, do all pins have the same caps would this fit on pretty much any insulin pen
RIGHT BACK TO DIANA in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen. The first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Diana answering my question about what type of insulin pen fits in the VIVI cap?
Diana Isaacs 14:25 No, that's a really good question. So they actually make different ones for different types of pens. So for example, if you're using like the novalogic products like novolog, and for siba are similar. There's a V cap for those. If you're using like human log products, they have a different Vivi cap. And so yeah, depending on the type of insulin that you're using, you would just go ahead and get the vivie cap that goes corresponding to the one that you need.
Stacey Simms 14:49 It's amazing that until now, I mean we're seeing a few more products address this, but it seems like you know insulin has been around for a long time and you know until recently cuz I've seen a few products like this until recently, the freo is the only thing I can think of that was really out there affordable, you know, easy to use, do you think people are just kind of catching on to the fact that this is really important?
Diana Isaacs 15:11 Well, I think this is just like a really neglected area. Like I spend a lot of my time like analyzing glucose levels, looking at CGM, and in blood sugars and all that kind of stuff. You know, often you're trying to figure out the puzzle. Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected. And as it's summer, you know, summer is approaching is really a good opportunity to remind everyone that this is a really important for insulin. I mean, this is so so important and will affect it, if it's not stored properly.
Stacey Simms 15:52 It just sounds like common sense. But I'm curious, have there been studies of this? Do we have any idea how many people are having issues with insulin that's not stored properly, or using insulin that has, you know, been out of the fridge for too long? Is there any information on that?
Diana Isaacs 16:08 Well, I don't know, if we have, you know, we certainly don't have like randomized control trial data on that. I mean, how would you do it? Right? I can tell you anecdotally, I think it's just difficult to capture. Because you could ask people I mean, oh, with any person will say that they've had their insulin at high temperatures at some point. I mean, if you, you know, are a human being that goes outside, you know, it's likely that your, you know, your insulin was exposed to higher than room temperature. It's just a matter of how long and I think in the summer, it's really easy for it to, you know, when you meant for it to just be a couple of minutes, that ends up being hours. And then before you know it, you just don't know. And I think also it's difficult to classify, because there's so many reasons that blood sugars can go higher. And so in the moment, it might be hard for someone to be like, Oh, wait, oh, yeah, I was, you know, I left my insulin in the car for three hours. That's why my blood sugar is so high versus they might be thinking, Oh, was it the food I ate? Or am I under stress? So I think sometimes it's just difficult for people to make that connection that it really was the insulin that made their sugars higher,
Stacey Simms 17:11 because I'm kind of picturing people listening to this episode of had diabetes for a long time going, I don't need that. It's been fine. Right? And I'm kind of one of those people that I'm like, Oh, it's fine. I can't imagine this really happening all the time. But you're exactly right. How would we know?
Diana Isaacs 17:26 Yeah, I would just encourage people to reflect on it. I mean, it likely has happened. If you had diabetes long enough, it's probably happened at some point in your life where your insulin hasn't been stored perfectly, right. I am a really big fan of patient choice, and people knowing what's out there. So if you've come up with a perfect solution, or your insulin is always at home, and you never go out great. You don't need something like the Vivi cat. But you know, if you're out you're traveling or going on a trip, I think it's good to know what options exist out there.
Stacey Simms 17:54 I'm curious too. And this is kind of separate from vicap. My son is using insulin pumps since he was two years old. And he we live in the south, as I've mentioned, and it's always hot, the summer is ridiculous. But he has the insulin next to his body. His body is pretty warm all the time. Is there any Are there any issues with that three days in the pump? Do you see people having more issues in the summertime? And do you ever recommend, you know, changing the insulin at more often because of temperature?
Diana Isaacs 18:20 I do. Yeah. A lot of people have issues is especially in the summer. I'm like I've seen people with like Omni pod. And it's just like boiling in the sun. And it goes bad very quickly. So yeah, I am a fan of encouraging people to change more often, like every two days instead of every three days if they notice that it's wearing off sooner. So I think like a lot of people should consider that in the summer if they noticed that third day there. boluses are just not having the same effects on their blood sugar's.
Stacey Simms 18:46 We've also found that winter to summer, we always have to change basil rates. And that's probably because of activity, but it's also because of heat. And I know that that affects people differently. How do you advise your patients to look at the weather and how it affects their bodies?
Diana Isaacs 19:01 That's a good question. I mean, everyone is affected a little bit differently. I really like Adam brown from diatribe. And he talks about 42 factors that affect glucose levels. And actually a sunburn is one of the things that could affect levels, it could increase glucose. So I think, you know, weather can affect it any kind of stressor on the body can absolutely affect glucose levels, but it is very individualized. For many people, the weather won't be a huge deal. But for some they may be more sensitive. And I think the best thing is to really reflect on it to review data with a diabetes educator or diabetes care and education specialist and really try to determine what are the patterns and who knows, yeah, it could be whether it does create a pattern for someone that if you know that it's helpful, because then you can kind of preemptively prepare for it and give yourself more or less insulin as needed.
Stacey Simms 19:52 Can we talk about sunburn for a minute, because every year in the parenting groups, somebody comes in and says it's their first time can the sunburn I raise my kids blood sugar, and everybody kind of says yes, yes. Why is that? Is it just trauma to the body? Is it like being ill?
Diana Isaacs 20:07 Yeah, I think it's like anytime there's a stressor on the body that can affect it. So yeah, if it's causing stress, you know, sunburns can be pretty painful. And we know pain can increase glucose, so it's likely related to those factors.
Stacey Simms 20:21 I don't wanna change the subject too much, but I'm reading your bio. You know, in researching for this episode, he talks about how you run a CGM shared medical appointment program. Can you tell us what that is?
Diana Isaacs 20:33 Yeah, so I am a big advocate of CGM of continuous glucose monitoring. And in our program, we often introduce people to CGM for the first time. And so with our shared medical appointments, we have usually four to six people with diabetes, and we have a meeting. And then we also have a dietician, and it's a two part shared appointment. And the first part, we get everyone together we place the CGM, and we have a discussion about what are the glucose targets and what kind of things affect glucose levels. We also review how to treat high and low glucose levels. And then everyone comes back after seven days and we download the devices and we we actually show everybody's data on a big screen and we go through it together. It's really interesting because a lot of people there, you know, there's similar things like the overtreating Alo or learning you know how oatmeal affects your blood sugar's you know, like, there's a lot of similarities that kind of it's nice to have that group environment. Yeah, that's
Stacey Simms 21:30 I've so many questions, but my first one would be, you'll have to, you'll have to come back on and just talk CGM with us. I'm curious, how do you manage or handle when people are looking at everybody's CGM numbers? And some must feel like, Oh, that's bad? Or I didn't do that very well. You know, do you talk about that part as well, and kind of managing the data mentally.
Diana Isaacs 21:51 So my rule is data numbers are data, and they cannot be good or bad. So it's simply being in target or out of target. But it's not a judgment, there's no such thing as good or bad numbers. And I'm really careful about this. I mean, even you know, when someone is 100%, in range, and has an agency of 6%, I try really hard not to say, Oh, that's so good. Like, you know, do jumping jacks, because, you know, I don't want someone then to have a higher agency and to be less than range and then not want to come back for their appointment because they think I'm only be happy when it's, you know, in range. So it's really an important point to not be judgmental with with data.
Stacey Simms 22:27 Oh, all right. You're gonna have to come back on and talk to us more about that. I think that's,
Unknown Speaker 22:31 I'd love to Alright, good. Good. Good.
Stacey Simms 22:32 All right, back to the summer, though. So since you work with a lot of people with with CGM, do you find that there are ways for people to keep their gear better on in the summer? Do you have any advice for that? Because diabetes technology can be kind of slippy in the summer?
Diana Isaacs 22:45 Yeah, no, it can be. So I'm a big fan of skin tack and of overlay patches, like sin patch, and stuff for keeping on CGM sensors and sites for the pump. I think technique with everything is really important. Making sure the skin is clean and dry. You know, placing it right after a person has recently showered or bathed just to have the most success with it digging and staying on. But I think absolutely using products like skin tack mass assault, for people that sweat, it's just it's like kind of a must to have those extra, those things can really help.
Stacey Simms 23:17 Yeah, we found or at least just anecdotally, everybody's skin is so different that you know, overlays vary brand to brand. So unfortunately, you kind of have to keep trying until you see what works for you. And one of the nice things we did locally when we could meet up and we're going to start meeting up again, which I'm very excited about is I always tell people, like let's bring samples, right? Because you get like a 20 pack of sim patch, and I get a 20 pack of stay put medical patches and you know, people just bring different brands, and then we can kind of trade because I used four or five different brands on my son before we found what worked. So if you're listening and you have a local group, and you're meeting up again, that's just something you can try cuz it's so frustrating.
Diana Isaacs 23:55 Yeah. And sometimes like, right, you put something on over it, and then you know, it starts peeling off after a couple of days, you have to put another thing over it. So yeah, I agree trial and error. You know, we
Stacey Simms 24:05 spoke a lot about the temperature extremes with insulin on the warm end, we touched on freezing, but let's talk about that again. What's the danger of insulin freezing? I mean, we know it doesn't work well. But is there anything to say about that in terms of why? Or you know, is it just that you mean, obviously, if it's frozen, you can't put it in a syringe, but it does completely lose its potency? Right?
Diana Isaacs 24:26 Well, I don't know if it completely loses its potency, but it very much does. But also, I mean, particles may form to which could make it definitely more difficult injecting and then I mean, I guess it could cause pain with injection as well. So I mean, it's just another reminder to like anything, you should really always visually inspect the insulin as well. And most insolence should be clear. So checking for that is really important as well.
Stacey Simms 24:54 Yeah, that's the the hotel refrigerator syndrome. So many times the fridge In the hotel is not set to the correct temperature. So you put your vial of insulin and it freezes. I've heard that so many times. It's just terrible.
Diana Isaacs 25:07 Yeah, I mean, it's really, it's really a problem. And so yeah, I mean, that's a really good point, when you're traveling, it's often really hard to rely on the hotel refrigerator, which is often is not set correctly for temperature is the right temperature,
Stacey Simms 25:21 what we usually do is, if we're staying for more than one night, is we'll put something you know, water, we'll put whatever in that fridge and kind of see how it does in a couple of hours, to see if we trust the insulin. But that's only helpful if you're going to be there for a couple of days, and you have a way to keep your extra insulin, you know, at a cool temperature, because so much of what we're talking about is not even so much for the the insulin you're using at that moment, although you want to keep it at room temperature, exactly. But you know, we don't have to keep it refrigerated. But when you're traveling with extra insulin, that's really a problem.
Diana Isaacs 25:52 I just would encourage people to think about it and just be just plan. I mean, just have a plan for the summer, whatever that plan is. And just be aware that I think some of the traditional methods that people use, like using like a lunch bag and putting an ice pack in it can, you know, you don't really know that temperature that's going to be in there. So there is an option available that you can be assured it's going to stay at room temperature. And it's just it's really simple. And it doesn't take up all this extra space and everything. I think that's the key. It's just it's a super simple thing. And so I would just encourage people to kind of check it out and go to the website and learn more about it.
Stacey Simms 26:34 It's interesting too, because insulins not alone, I mean, so many medications are temperature sensitive, as newer insulins come out, do you think that the temperature sensitivity will ever be factored out of insulin? Or it's just it's just part of the component?
Diana Isaacs 26:51 It's a really good question. Because I I'm sure you know, there's research in this area to see can insulin be more stable, or it's not? I think the problem is, it's just it's a large peptide. And, like due to its nature, it's just really hard to get it to be stable for a long period of time. I mean, it's one of the reasons why we don't have oral insulin, at least not yet. Like we don't have it in pill form. It's just really, really unstable. I think it's going to be challenging. Maybe one day we'll have that. But it's definitely going to be a challenge to
Stacey Simms 27:19 have that. You mentioned the newer insolence, like the longer acting like to CBOE and toujeo. Is that considered an advancement? Or is it just different, it's not going to apply to the shorter acting?
Diana Isaacs 27:30 Well, I think it is an advancement, in that we have an insulin that they were able to alter to work longer in the body, which I think ultimately really helped to stabilize blood sugars. And when you think about like, where we progressed, we started off with NPH, which you know, only works like half a day. And then we got longer act insulins like lantis and lab Amir, and then now we have these, like ultra long ones, like TJ Oh, and receba. And there's actually a weekly insulin that's in development that hopefully will, you know, see in the near future. So I think we're definitely making advancements and insulin, which is really exciting. Although the other area where we need to make advancements, which is a whole other episode is the affordability of insulin as well. But there are definitely advancements that are are being made. So yes, maybe with the storage, those will be things that will get better. But I don't see it completely resolving, you know, anytime soon.
Stacey Simms 28:23 How do pharmacies Sue with this? I mean, as far as I know, we've never had a problem getting our insulin from the pharmacy at the right temperature, of course, then I have to bring it home. And we do a lot with mail order as well and knock on wood. It's always been delivered, I think at the right temperature. Is there a problem from that perspective as well, like in the supply chain,
Diana Isaacs 28:43 know, the supply chain is heavily regulated? So I mean, they are monitoring refrigerators constantly. And they have certain standards, there's inspection so you can feel really good about the supply chain. It's really once it gets to the person that it's not regulated. But yeah, in the pharmacy, it is very, very maintained to a tee to those temperature and they're like specialized refrigerators is not just your it's definitely not your hotel refrigerator that for storing Insulet
Stacey Simms 29:12 Yeah, it's good. That's good. That is good. Before I let you go, I'm just curious. I we have been lucky enough to see my son's endocrinologist in person for the last couple of visits when we did a lot of telehealth. Are you seeing people back in the office? I mean, how are you all doing through all this?
Diana Isaacs 29:29 I never stopped seeing people in the office. So I've been here through the whole pandemic, I've actually come to work every day. Now. A lot of our visits have been virtual out of convenience for people but we are open and people could come here you know, whenever they want. And some For some it's preferred because as much as we've made advances in technology, we you know, we've got some patients who really have challenges downloading their data at home and stuff and it's, it's good to have them in the clinic. So yeah, our doors are open and but I will Say telehealth has flourished. And for a lot of people, it just makes so much more sense. Like today this morning, you know, we trained a person on their new pump. And rather than like me having to have her come in next week, I can just do a virtual and just look at her data that way and make adjustments. That's kind of where we're at with it.
Stacey Simms 30:15 I would imagine your patients have been very happy to walk in and see you during this past year. Like it's very be very reassuring. I was surprised how when we were able to see my son's endocrinologist again. I'm kind of happy we were.
Diana Isaacs 30:29 Yeah, I think it's nice. And I mean, I feel especially now with like the vaccine now that we've all been vaccinated, I feel very, you know, I feel great. It was definitely a little stressful. Like, I'll tell you back in December, we were doing our CGM shared medical appointment. And I had a class of four people and I, you know, you see people starting to like, move their masks down, and you're like, Oh, my gosh, is this safe, like at this stage, because we're doing a class and that was right, when the numbers were really increasing? So we did, we did pause them for a few months till the numbers came down. But But yeah, I think overall, you know, it's good. It has been reassuring. And you know, it's care doesn't stop, like some people are getting new insulin pumps. And yes, while you can get, you could do virtual training. And for many people, we do like some people really want that hands on time, when that was their first time starting upon, they want to come in and see it.
Stacey Simms 31:17 I can't imagine the people who were diagnosed this past year or had children diagnosed and were more isolated than normal. It's isolating enough to have diabetes. And I just can't imagine. So thanks for doing that. And, you know, keeping in touch with everybody, I mean, I'm not your patient. You don't really know me, but I want to say thank you.
Diana Isaacs 31:34 Oh, you're welcome. I mean, I love doing it. I love working with people with diabetes. It's so rewarding. And it's like, I just, yeah, I just feel like I feel very optimistic. With all the new technology and the advances being made. I just feel like, yeah, there's so much opportunity to help people.
Stacey Simms 31:50 Well, thank you so much for spending so much time with me. And we'll have you back on to talk more about CGM and the shared medical stuff. I think that sounds great. Thank you so much.
Unknown Speaker 31:57 Oh, you're very welcome. Yeah, thanks for the opportunity.
Unknown Speaker 32:05 You're listening to Diabetes Connections with Stacey Simms
Stacey Simms 32:11 I’ve got more information about the temperature at which insulin is supposed to stay. We touched on that. But if you'd like to learn more, and there's some more studies that really delve into this, I'll put that at Diabetes connections.com. Every episode has its own homepage there. If you're listening on an app for podcasts, there are always show notes, but some of them don't show these things very well, you can always come back to the main page, and I'll put it there with a transcript as well. And the promo code for VIVI Cap is DIACON21, like Diabetes Connections, di a co n di a con 21, which gets you 10% off the product. Alright, tell me something good. Coming up help prom photos provided some unexpected inspiration. But first Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night, and I got a Dexcom alert and he was upstairs in his room. And you know, for some reason, that took me back to the days when we basically had blood sugar checks on a timer, we would check doing a finger stick the same time every day at home and at school and you know, whatever extra we needed to. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the movie to get up and check him. I knew what was going on, I could decide whether to just text him or go upstairs and help him out. Using the share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up required, go to Diabetes connections.com and click on the Dexcom logo.
Tell me something good this week, I don't know about you. I'm in a lot of moms groups. And I have seen a bajillion prom photos over the last month and it's really nice. But one of the things that happened that I didn't expect is that it provided diabetes inspiration to families, especially families with younger kids, I don't have permission to share her name. So I'm just gonna tell you the story here. But this woman posted that she was looking at all the pictures of the beautiful girls and their dresses and their Dexcom and their pumps and their Omni pods showing. And you know, she was excited to see that. But her little girl who's totally into the princess phase right now she's six or seven years old, loved seeing the photos of all these grown up girls with diabetes. And it really provided an easier way to get her little girl to feel better about the gear that she is wearing. And I just thought that after all these years was still kind of unexpected. Now let's be honest, not everybody wants to show their gear all the time. And that's okay too. And honestly, I highly doubt that these girls are going to the prom thinking. I'm gonna have my mom posted. On Instagram or Facebook and that's going to inspire somebody else. Right? But man did it ever. So thanks to all of you who did that, who posted the photos? What a cool thing I have to wish a happy wedding anniversary to Janice and Bill Grigsby they celebrated 50 years married in April. And Janice was cute. I was asking for good news in the Diabetes Connections group and she wrote that may not be what you were looking for, since it doesn't have to do with diabetes. But you know, Janice, we're all together because of diabetes. Janice and Bill's daughter marked 20 years with type one late last year, so I think that counts so congratulations on that amazing milestone. It doesn't all have to be diversities. 50 years married. That is fantastic. And a big congrats to Alison nim Lowe's, who had a baby last week, little Stellan joins Big Brother Henrik is still in it was a little impatient came into the world a little bit early. So he'll be staying at the hospital for a while. And they helped to bring him home by the end of May. But everybody's doing well. Alison is somebody I've known for years. She's been on the show before I will link up that episode. She's on social media as the diabetic therapist Of course, we talked about therapy and mental health in that episode, but congratulations all around really exciting stuff. If you have something good to share, please let me know Stacy at Diabetes, Connections comm or pop into our Facebook group and share when I asked on a regular basis. Just tell me something good. Before I let you go, quick reminder that on Wednesdays in May, I am doing in the news, a live diabetes newscast every Wednesday at 4:30pm. Eastern time. I hope you can join me for that. I'm also turning it around to then putting it out on different social platforms. And on this podcast. That episode right usually has been coming up Thursdays or Fridays. And it looks like we may continue this because people are really liking it. I definitely need to know how you feel about it though. So you can email me comment on the post itself. It's a little bit of different work than the podcast to be honest with you. Not necessarily more work, but I do have to brush my hair and put some lipstick on to go live on Facebook. That's just how I am if I continue this, maybe you'll see me eventually in the ponytail and opaque but I'm having a lot of fun doing it. And I think it's a need. We don't really have a diabetes newscast anywhere. So I may continue. I will be deciding probably between this weekend next week's episode, and I'll definitely let you know. Thanks as always to my editor John Bukenas from audio editing solutions and thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then be kind to yourself.
Benny 37:42 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 10 Nov 2020 | Staying in the Military After A T1D Diagnosis - Jason Cyr's Story | 00:38:44 | |
Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach. Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. You can listen to our episode with Mark Thompson here. In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and a new podcast about diabetes and mental health. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription
Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28 This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011.
Jason Cyr 0:40 You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do?
Stacey Simms 0:56 Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two, we are getting close to his 14 year diversity. My husband lives with type two, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed. I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that. Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well. And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com. Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you.
Jason Cyr 6:16 Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered.
Stacey Simms 6:22 You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed?
Jason Cyr 6:42 This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things.
Stacey Simms 8:06 And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay?
Jason Cyr 8:10 Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked. So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military. And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired.
Stacey Simms 11:26 All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment?
Jason Cyr 12:06 Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can.
Stacey Simms 13:02 That'd be just be the perspective of a parent versus family
Jason Cyr 13:05 Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind.
Stacey Simms 13:37 When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service.
Right back to Jason answering that question. But first diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed.
Jason Cyr 14:58 I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive. And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to those guys was just great.
Stacey Simms 17:55 When you got your Dexcom, having been someone who already kept their own spreadsheet, and pretty detailed ones, I'm curious what you've done with your data, I famously on the show, have the perspective of my son and I, we're really not big data, diabetes, people we are go by feel, you know, we do great, it's all good. But I love respect and marvel at people like you who really dial into it. So with that being said, when you got the Dexcom, and you opened up clarity, or you looked at these things, what was that like for you?
Jason Cyr 18:29 Oh, it was huge. It's even better now with the six. I mean, I started off with before, you know, went through the five transition to the six. And the six is just like it's almost overwhelming the data that that? Well, it is overwhelming, but it's just great. It's also really great to see the the amount of stuff that's available to you. And so yeah, I use the data all the time. It's great. When I'm racing, we just, we didn't have much of a race season this year. But I think I did five races, and three of them were enduro racing, which is the it's a mountain biking discipline that I focus on. And those races can last for four to six hours, seven hours, you're only racing stages. But you're you're riding from the end of a stage all the way back up the mountain to another stage to race back downhill with these chips on your bike where they they're collecting time. And so seeing the trends, whether it's going up or down or it's really good to see it helps immensely. And then I also look at that data after the race to see it because that racing discipline is very anaerobic and going full gas for the three this to seven minutes or eight minutes that the stage lasts. When you finish because your anaerobic, you know you're you're dumping glycogen in your blood, you're getting these huge spikes that you know your body has to test to deal with later on. And so knowing exactly how much insulin to take, after, say two stages and maintain a good blood glucose level is really important. And obviously you couldn't do that with just by finger sticks, trying to figure it out. So it just Yeah, the data that I get from that informs my decisions and racing, especially over a long day, or days leading up to it, I couldn't do without it. So I think the CGM is really important.
Stacey Simms 20:12 I must have sounded ridiculous to you, I promise we don't just wing it with my son,
Unknown Speaker 20:16 or just
Jason Cyr 20:19 also get that I am a total geek. I mean, that's I think there's reasons to push me to cycling coaching, because I just love looking at heart rate data and power data and overlaying these things and figuring out the puzzle of how we make someone stronger and faster.
Stacey Simms 20:33 Yeah. And I'll tell you what podcast listeners are my listeners are super data people, which I feel bad sometimes that I'm their host, because people that listen to podcasts in general want more and more and more information. So sometimes I'm like, sorry, but you know, we do the best we can, and want to go back if I could, to some military questions. Because there are so many young people who were diagnosed with type one who unfortunately, cannot serve in the military. This has been their dream. And curious what your perspective is, do you think that will change? I know that there's they're looking at it. I mean, there was a study a year or two ago that they were doing at Fort Bragg, with people with type one trying to kind of see how more modern diabetes technology might help. What's your perspective on that?
Jason Cyr 21:16 Yeah, I think, and obviously, I'm not a physician, or a doctor in any way, or probably an expert, I'm probably an expert on my body and how it reacts, I think that maybe technology could fix the problem. That said, I make silly decisions. When I'm hypoglycemic, and soda, I think, to put a combat leader in a position where they have to make life and death decisions. And there's potential that you could be hypoglycemic in the moment, obviously, is detrimental. And that's just on face value. And I haven't looked at how the technology could change it. But I will say that it has made me much more aware of highs and lows just because of the alarms that are associated with a continuous glucose monitor. So yeah, I think it's possible. Yeah, for sure. But I would let you know, the experts make those decisions that said, I can empathize with someone who just really wants to be have a career in the military, because it's made me who I am. I mean, it does. Obviously, my military service doesn't define me as a person, but it is a huge part of my life. There's very few moments I will say that I did not enjoy in my 23 plus year career in the military. So yeah, I hope that we get to the point where that's technology fixes that or perhaps there's a cure someday, I certainly wouldn't enjoy that. Because I tell you what, the first thing I'm gonna do is eat a whole cheesecake.
Stacey Simms 22:39 When you return to the military, if your diagnosis what you do, what was your job? What were your duties? Um, I
Jason Cyr 22:45 think what was my first my, I think I was the, the Operations Officer for this critical infrastructure protection Battalion, which we started, we use a lot of 18 series, guys. 18 series guys are special forces, guys. And we modeled that program off of what the defense Threat Reduction agency does. And they typically use a, or at least in the past to have I'm not sure what they do now. They use a soft guy like a Seal or a Green Beret to do the targeting piece when we look at how we would defeat or take down like, say, a facility. And so I was I think I was an operations officer. And then I moved to the executive officer, the deputy commander of the that critical infrastructure protection Battalion, and I spent the rest of my career there, basically, because I was working for these two officers that wrote letters recommendation that keep me in the military and so that I finished my career out there. And you know, probably one of the reasons I did retire is I was never going to go and command a combat unit ever again. That was not going to happen. You know, I wanted to be obviously I joined the Ranger Regiment and then spent time as a special forces guys starting as an 18. Charlie, which is a special forces engineer. You know, I did those things because that's what I wanted to do.
Stacey Simms 23:55 You mentioned that now you're coaching your coaching other cyclists? Yeah, correct. How so? How is that going? And I'm struggling to think of how to ask this because you started doing that during this pandemic.
Jason Cyr 24:06 They I did and I have to say it's been it's been incredibly successful. The company is cycle strategies. We coach road cyclists, cyclocross, but we focus on you know, the mountain bike discipline, so enduro, downhill, cross country, mountain biking, and I thought, hey, because we're in the middle of a pandemic, this will give me some time to get my feet on the ground, figure out the business aspects, you know, subs, figure out the books, figure out how we're going to deliver the coaching process, and it's been busier than I ever thought maybe that's that is because of, of this. In the process of coaching. Most of it is online, I use an online platform called training peaks to coach my athletes, and I do do the other side of the business is the skills piece. And so I do do skills training with adults and kids, but we're wearing masks. I don't touch it. You know, we don't there's no contact. We just I'm really trying to do our best to stay six feet away in cycling is sort of a socially distance thing anyway. So
Stacey Simms 25:06 it's been amazing though, because cycling has been so popular. I mean, it's been more and more popular every year. But during the pandemic, we tried to get my son's bike repaired. And it was unbelievable. how busy everybody is there at a party. You know, everybody wants to bike ride right now.
Jason Cyr 25:21 Yeah, yeah, I know, our local bike shop has had a really difficult time, trying to come up with way logistically to come up with ways to find parts for folks and just keep the item. Yeah, so it's been great for the sport. I think it's Yeah, it's helped me with a few clients that have just decided, Hey, I'm going to take up cycling, I really enjoy this. Oh, I think I need a coach. And I'm getting an email. And yeah, it's, it's, it's been great. I love it.
Stacey Simms 25:46 What is your advice for people with type one who are reluctant to get active? Because it is a lot of work? And frankly, even with all the technology, there is still some fear, right? It's hard to do a two hour bike ride without going low. If you haven't done that already.
Jason Cyr 26:03 Yeah, my recommendation is, well, first off, I just think living a healthy lifestyle helps you control your blood sugar, much better. And isn't that the intent, obviously, we don't have a pancreas that functions, at least that part of the pancreas doesn't function properly, to provide insulin and the glucose back in the cells. And so exercising helps you a treat some of that out of your system to help to put it back in. It makes you more responsive to insulin. And again, I will full disclosure here, I'm not a physician at all. I'm not an endocrinologist. But that has been my experience. So yeah, that's the first point is it really helps me at least control my blood sugar by just exercising and being consistent about it. Second, it's, it's just a healthy thing to do. And the third thing I would add is that taking it slow. So you may start with 15 minutes of writing and see how your body responds to that. And then add another 15 minutes until you get to an hour something that would be my recommendation. And I just feel like it's a great way to live. Anytime I'm sedentary, I am now chasing numbers. But if I just stay active, generally active and I'm not saying I go out and you don't have to go out and train for two or three hours every day. That's nice. And I know folks that do do that. But I don't do that. I may go for a couple hour ride to three times a week. Otherwise, I'm just doing an hour and maybe a little bit of weightlifting or something in nowadays in the garage.
Stacey Simms 27:27 What do you still like after all this time about riding your bike about cycling?
Jason Cyr 27:32 Oh, yeah, that's a great question. I don't know I'm sure my wife would have. She would say I'm obsessed. I don't know. All things. two wheels. We have dirt bikes. We've got cyclocross bikes. I even got a unicycle this year, as a way to figure out how to work on some balance. I don't know I think for me, cycling creates an experience where I can think about the day I can decompress. I've always used cycling when I was in the military, especially command to decompress. So I would come home, I get on my bike for an hour, and I go just smash out some laps, and really get my heart rate up high a few times, do some intervals. And I would be completely decompress to come home and have dinner with the family and being a good husband and a good father. So for me, I think it's just a bit of an escape, perhaps the endorphins that are released in the process of of executing some physical activity. I'm not sure but I do know that I do a lot of thinking. When I'm while I'm writing,
Stacey Simms 28:27 how's the unicycling going?
Jason Cyr 28:29 Good. I took it took me a solid hour of falling before I figured it out. I put knee pads on and shin pads is pretty funny. The helmet everything. And I just went out there. I just started getting after it. But now I can ride all the way around town on it. Wow. Sure, my neighbors thought that I was
Stacey Simms 28:48 gonna say does anybody stop you? Or take Oh, yes.
Jason Cyr 28:50 Well, interesting enough. My neighbor lives right across the street. He's a really cool guy. He's probably in his maybe mid 50s or something like that here. This is all Jason Let me try that thing. And as I said, God, be careful this thing you'll get hurt. And he jumped right on it and wrote it right down the road massive. Oh, look at that. That's awesome. And he knew, you know, he, he had spent his his youth riding in them. But I didn't know that. So I thought it was great. I was amazed. That's awesome. That's fine.
Stacey Simms 29:16 Yeah, you just cycling isn't the kind of thing that you just jump on and go, that's somebody who had a little bit of experience?
Jason Cyr 29:21 No. And I've got a few kids that I coach, and they all ride unicycles. So I said, Well, hey, you know, if they're gonna do it, I've got to figure this out. So every time in between, like after races or before races, they're just riding around on the unicycle. And I have to say, what it really engages your core. I thought that was really cool. And then the second piece that you get out is this great building of motor skills, and motor schemata or proprioception that you're kind of building and so the balance that comes from that is great for cycling, especially the offer of disciplines.
Stacey Simms 29:52 So listen, I went all over the place. Was there anything you want to talk about that I didn't mention?
Jason Cyr 29:56 No, I would I would add that, you know, thank you so much for letting me You know, I guess, Share, share my story. I don't think it's remarkable. I'm flattered that you think it is. The last thing I would add is that service and the military and service to your country is one, it is just a great privilege to lead and serve one serve, but to lead and be given the great responsibility to lead men and women, I think is just it's a privilege, really, and I wouldn't have done anything else had I had a had an opportunity. I just I've really enjoyed my service to the military and just serve with all those people. Obviously, there's ups and downs. You know, I've lost friends along the way, you know, in Afghanistan and deployments, and just other places, training accidents, those kinds of things. But it's just been a great opportunity. And, and I enjoyed every bit of it.
Stacey Simms 30:42 Well, we can't say thank you enough for your service, and how much we appreciate everything that you've done. And thank you so much for coming on and sharing your story. And if you don't mind me asking, I would love to have a unicycle picture. Oh, sure. Next time you're on.
Jason Cyr 30:56 Absolutely. I've got your your number. I'll text you one.
Unknown Speaker 30:59 That'd be great. Thanks
Unknown Speaker 31:00 so much for joining me.
Jason Cyr 31:01 Thank you, Stacey. Thanks very much.
Unknown Speaker 31:09 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:14 More information about Jason's story, he was written up quite a bit for bike riding with the Novo Nordisk folks, as he mentioned, I mentioned that unicycle shot, I will put that in the Facebook group as well. Many of you who gosh years ago used to follow my blog may recall that my kids elementary school had a jump rope club. And stay with me, there's a point here, the jump rope club was featured, we put them into the Big Blue test two years ago, which was a wonderful effort from the diabetes hands foundation to get people to exercise and check blood sugar. And it was a really great outreach efforts. So the jumper club was featured in that. But another elementary school where a lot of my friends kids went, had a unicycle club. And that always blew my mind. Because, first of all, who had the idea to start the unicycle club, and it was very popular, and they did just as much with those unicycles as my kids did with the jump ropes we had, like 40 kids, fourth and fifth graders zipping around on unicycles. It was bonkers, but good for you. Cornelius Elementary School in North Carolina, we salute you. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, there were two years almost, I think we used it before share. Trust me when I say using share and follow apps has made a big difference. Then he and I now set parameters about when I'm going to call him or text him you know how long to wait, that kind of stuff. But it really helps us talk and worry about diabetes less. You know, if he's away on a trip or at a sleep over, it gives me peace of mind. It also helps I love this if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on loads before there were a big issue. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week Happy Anniversary diaversary. Happy 10 years to the college diabetes network. I can't believe this organization is 10 years old. We have been following their progress from the beginning. The college diabetes network started when Christina Roth basically started a campus group by herself wanting peer support on college campuses. And then she expanded into a national nonprofit which only served the young adults it really was geared towards college kids. But as it grew, and Christina saw the need, it continued to expand and now includes information for high school students, college students, young professionals and people like me, parents and family who are trying to stay informed, stay calm, learn more about sending their students, their kids with T Wendy off to college. So congratulations to the college diabetes network with more than 224 chapters now on campuses across the country. They are just doing an incredible job. They have a bunch of celebrations going on this month. And Benny is he's a sophomore in high school. I'm trying not to get too far ahead of myself. I have learned with all these years with type one, you know, in my family, that while it's good to be prepared and think you know what's coming, you really don't know what each stage is going to bring with your child because every kid is different. So I've stayed away from college type one stuff as much as I can until we get just a little bit closer. another bit of good news this month. The diabetes psychologist podcast has launched and this is with Dr. Mark Heyman and I spoke to him earlier this year. And then kind of off the year we talked about his podcast and I'm thrilled that he took the dive It has done this, I will link it up in the show notes. There's just not enough in terms of resources right when it comes to mental health and diabetes. So kudos to him for launching this. He has launched it as a limited series. He has a bunch of episodes out, and we shall see if he continues, but I'm thrilled that he put these important episodes and good help out there. And this last one isn't really a concrete Tell me something good, but it's just something I love. You know, every year, there are diabetes challenges on Instagram and Facebook, you know, social media stuff, I'm sure there's stuff happening on tik tok and snapchat that I will never say, but it's all about, you know, post every day, and they give you something to post. And if you're interested, I mean, we're almost halfway through the month. But there's still a long way to go. I'll link up a couple in the show notes. And I'm sure you've seen them on Instagram, but I, I love these. I don't participate anymore, because I have a lot of other stuff going on. And you know, it's Benny's type one. I mean, it's really not something I can take pictures of all day long anymore. I'm not taking care of him in the same way. But I love to see these posts. I don't care if you're posting twice in a month or every single day, your posts are seen. They matter. And they make me smile. They're not all happy posts. Certainly they're all good news posts. That's not what diabetes is all about. But it really is heartening to remember that this community is still the DRC it's the diabetes online community, and your voice matters, your pictures matter. So thanks for letting me take part a little bit in what's going on in your diabetes life. That way, if you haven't told me something good story, you can always reach out Stacy at Diabetes connections.com. And I regularly asked for submissions in the Facebook group, Diabetes Connections group. A couple of reminders of things I've been telling you about in past episode First, the contests are going on right now I've got two contests this month, one on Instagram one on Facebook. So the Facebook one is only in the group. It's in our podcast group. But the Instagram one is on the Stacey Simms account, it's the only account I have over there. So definitely check those out. Again, links in the show notes, any app you're listening to will have the show notes. So you can always go back to Diabetes connections.com. And the second thing I want to make sure you know about is the ebook, Diabetes Connections extra. I'm giving this away for free. Yes, you do have to sign up for my newsletter. And if you already signed up for the newsletter, you can still sign up and get the book you will not get double the newsletter. Although, you know, would you really mind hearing from me more than once I know. But definitely sign up and get that ebook. I think it's really good for newer diagnosed families, for people who have maybe just started a CGM who have never really figured out what ketones are. And I think for veteran families, and really well educated people, let's face it, like yourself, probably who listened to this podcast every week. It's fantastic to give to the other people in your life, who may not really understand diabetes, because Diabetes Connections extra is full of conversations about the basic building blocks of diabetes management. And some people just learn better when they read a book, rather than sitting down with a grandma, or sitting down with your best friend who's interested and kind of explaining. And that's what I think it's really going to be good for. But
you tell me I'm interested to see what the reaction is to this. That is Diabetes Connections extra and we are giving it away for free, it will not be free forever. I'm going to put it on Amazon as an E book in a couple of weeks. Okay, thank you so much to my editor John Bukenas from audio editing solutions. And thank you so much for listening. It means the world to me that you're here week after week. I appreciate it so much. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 38:38 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 27 Sep 2018 | Alec Smith Died While Rationing Insulin (Bonus Episode) | 00:44:57 | |
A difficult but important interview with Nicole Smith Holdt. Her son, Alec, died in 2017 just after he came off his parents' health insurance and realized he couldn't afford his supplies. He began rationing insulin and died less than a month later. Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters. More information: Insulin4All Protest information NPR: High Price of Insulin Leads to Lethal Rationing Snopes: Did Alec Smith Die Because He Couldn't Afford Insulin
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| 06 Oct 2020 | "Innovation All Stacked Up, Ready to Go" - Medtronic Diabetes Group President Sean Salmon | 00:44:07 | |
It's been a busy fall already for Medtronic; they've acquired Companion Medical and the FDA approved their 770G pump. Stacey catches up with Diabetes Group President Sean Salmon to talk about that and much more. Find out the difference between the 770G and the upcoming 780G, their plans for longer-wear pump insets and when they might have a no-calibration sensor. In Innovations this week, a new study showing the benefits of once a week basal insulin. It's called Insulin Icodec. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypopen, the first remixed autoinjector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27 This week, catching up with Medtronic, we're talking about the newly approved 770 G, looking ahead to the 780 G, their acquisition of In Pen and how they think they've cracked the code on longer where pump in sets,
Sean Salmon 0:42 the things that are in insulin to keep it from going bad. The preservatives, if you will, are behind a lot of that sort of site actions that you get. So we're able to take that stuff out and have just filtered Insulet. a queue will deliver to the site. That's really the magic behind getting the extension of use.
Stacey Simms 1:00 That's Sean Salmon. He heads up Medtronic diabetes group. In innovations this week, a once a week basal insulin, how would that even work? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you if you are new welcome. Glad you found us We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned to back in 2006. And we have his high school sophomore 504 meeting this week. Yeah, it's virtual. His whole school is virtual. I've shared on the show before he is part of a very large school district in the Charlotte, North Carolina area. And the whole district has been virtual. younger kids are starting to go back to school in October. They're staggering it right now High School won't go back in person until January at least that's the plan. So I'm really interested to see how they handle this 504 meeting. He's had one, you know, we've been diagnosed since he was two. So he's always had one. In our district. We have a separate DMMP a diabetes medical management plan that covers a lot of the basics that are maybe in your your child's 504, but I assume this will focus on testing. I don't know. I mean, he's home. So you know, he can go to the bathroom when he wants he can drink water when he wants. I'll share more about that though. Mostly, I think this is about keeping our place in the 504 for things like the ACT and the PSAT and all that testing and he is so thrilled, but it's going to be coming up. Another thing I want to tell you about real quick is Hey, in September, we saw a big boost of sales of the audio book of the world's worst diabetes Mom, you know, this is my book, it's part memoir, part advice, stories, real life stories about raising a child with type 1 diabetes. And the audible version has been very popular. And I'm telling you September, I don't know maybe end of summer and everyone decided to get an audiobook, but audible loves when that happens. And now I have two free copies to give away, you do not need to have an audible account, you don't even need to really start one here, you're not going to be signing up for something you can't get out of you do need an Amazon account. So if you want the copy, I'm not doing a fancy contest on social media, I probably should. But all you have to do email me Stacey at Diabetes connections.com put audio book in the subject line and I will give you the first two people who do so a free book will make it very simple there. If you're interested in perhaps the paperback or the ebook, you can head on over to Diabetes connections.com or it's on Amazon, whatever is easiest for you. One more thing and it's an apology. Last week I apparently mixed up when I was talking about Medtronic 770 and 780 G. We do clarify that in the interview here with Sean Salmon. But to be clear, the 770 g was recently approved in the US. It is basically the same as the 670 g except for the addition of Bluetooth connectivity for data sharing and remote monitoring. And as you will hear, you'll be able to update the 770 G and future Medtronic pumps at home just like your phone. Alright, Sean Salmon. With that and a bunch more we go down a laundry list, but first diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, I was really impressed at how much they get diabetes. And it makes sense when you think about it. Their CEO, Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, and the people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies deliver no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is Medtronic Executive Vice President and President for the diabetes group, Sean Salmon. And we spoke just as the deal for Medtronic to buy companion medical makers of the In Pen was closing. So that is a done deal. Now, In Pen is a smart insulin pen, you're probably familiar with it, it keeps track of dosing and recommended dosing, sort of like what you'd get with an insulin pump, you still have to inject, but the dosing can be automatic, the app will tell you exactly what to do. And keep track just like an insulin pump does as well. We talk about that. And a lot more here. Here's my talk with Sean Salmon. Sean, thank you so much for joining me. There's a lot going on at Medtronic these days, I appreciate you spending some time with me and my listeners.
Sean Salmon 5:44 That's my pleasure. I appreciate the opportunity. Thanks, Stacey.
Stacey Simms 5:46 We're gonna go down pretty much a laundry list of technology and questions from listeners and things that they want to know. But let me start slow. And just ask you, how are you feeling about everything these days, we've got delays because of COVID. We've got, you know, a year like no other it's a cliche at this point. But you know, in your own words, how are things these days at Medtronic, and in terms of, you know, what you're looking at going forward?
Sean Salmon 6:09 Well, it's interesting, right? I think we're all living through some unprecedented times, just everywhere in the world right now. And it's certainly challenging. But at the same time across Medtronic, you know, I think we've got such a rich pipeline, and just about every single business, it's, it's exciting to see what you know, what the future is gonna bring, we get past some of these near term challenges. I've been here for 17 years, I can't remember a time where we had so much innovation all stacked up, ready to go
Stacey Simms 6:34 Well, let's jump in and talk about it. One of the first things I want to ask you about is the acquisition of companion medical. And this is the startup they've got the in pen. This is the I think my listeners are very familiar with it. And we've done episodes on it. So tell me a little bit about what the plan is, for companions in pen product with Medtronic, what are you gonna do with it?
Sean Salmon 6:59 Yeah, sure. Well, maybe I'll start out with, you know, why did we decide this was a good idea? And yes, I came into this role. Yeah, you whenever you start a new job, it's been about a year from now, the first thing you do is you formulate a strategy of how are you going to serve your patients in the market? And it's really, you know, strategy is really a question of, what are you providing for who, when you start asking those questions, it really narrows down what your focus should be in, and didn't take that long to sort of Peel apart? What is it that are people living with diabetes are seeking and how are they? How are they being treated today. And if you look around the world, it depends on the country you're in. But multiple daily injections is the most frequently chosen therapy, it's something that ranges between 60 and 90% of the treatments that are out there. So you know, really the philosophy app is that for us to know, what are provided for whom we need to know, you know, where do people where are they on their journey? And where do they want to go. So, you know, injection in and of itself is a fine therapy. But there's just really variable outcomes that patients are being able to get from that. And a lot actually about just the, it's made difficult by the fact that you really don't always know how vigilant you are, how much insulin you've taken, how much you have on board. And it's very hard to keep track of all that. And what companion has done with the implant system, of course, is to track that insulin, so you know exactly how much is given at the right amount of time and have some estimation for carbohydrates, the ability to load that up. And then of course, the CGM data is there. So when you have those components, a lot of that difficult math calculation about how much insulin Do I need to take at a given time is made simpler. And we can extend that by adding a lot of what we have within our automated insulin delivery systems, algorithms, personalization of those algorithms into that experience with a pen. So if you will, we're trying to close that open loop, or at least close it down some and what we do with automated insulin delivery systems as we have this track record, right, have you just recording CGM data over time, and knowing what the influent amount is, you can really get to an understanding of how individuals kind of respond to insulin, and more personalized, the amount of dosing that happens. So get an even tighter connection to how much insulin someone needs to take at a given point of time. Of course, on meal handling, that's the place, we're really pushing a lot of our technology, we have a very large and capable group that does data science and artificial intelligence. And all that really means is that we're able to take large data sets, and then put them into actionable insights that really simplify how people can get better control without having to do anything. And one of the really interesting areas we're investing in right now is around meal handling. So we can with our technology have a really good sense of when you're going to eat. And we can confirm that some gesture control technologies that come from a wearable like a Fitbit, or an apple watch or something like that. That tell us can confirm that some is eating. So in that instance, you could, for example, remind people, there's been no bolus given that it's time to bolus. And if you miss just two boluses a week in a meal, that equates to about a half point increase on the A1C. So obviously, outcomes can be made better. But the important thing is that it's done in a sort of an invisible way or helpfully in the background way. We're not asking somebody to anymore, which I think is really the sort of driving principle behind what companion medical set out to do within pen spec, this least burdensome as possible? Well, we can add a lot of technology that isn't visible to the user, for the most part, but can really drive a better experience and better outcomes. So what we're trying to do with a closed loop we can bring to this open loops, I said, and that's really, I think how the two fit together can help it a lot of ways.
Stacey Simms 10:58 A couple of questions about You just said you. You mentioned the gesture technology. That's Klue, right. You all acquired Klue this year.
Sean Salmon 11:03 Yes, exactly.
Stacey Simms Is that going to be part of a companion medical system?
Sean Salmon Yes. So the idea is, we're going to have that for any means of insulin delivery, right. So it's the ability to detect that somebody is in the process of eating. And the absence of any kind of bolus is a great opportunity to say here, let me give you a helpful tip here and remind you to bowls, whether you're pushing a button on your pump, or you're, you're reminding yourself to bolus we can drive some improvement there. And it was evaluated in a recent study that we did. It's a small study. But we showed that we could fact drop a one suit by a fairly sizable amount just by bolus reminder. Now, ultimately, I think we can use Klue and that technology in a way that can actually automate the delivery of bolus so nobody has to do anything within a sort of closed loop system. But you know, that's, that's some more work than where, or whatever to do it. Absolutely. It's
Stacey Simms 11:53 you heard me laugh, because, you know, just by bolus reminder, parents around the world have children with Type One Diabetes would argue with you that a simple bolus reminder in the form of a parent does not make that much of a difference. Yeah. But I hear you, I
Sean Salmon 12:07 think it Yeah, I mean, the difference here is the bolus reminders, and just it's time to bolus what we can do. Knowing the history of how much insulin is on board. Get a quick estimation is the medium small, large amount of carbohydrates being consumed, we can tell you how much to bolus not just that you need the bolts, right? which we think is a helpful insight.
Stacey Simms 12:28 When you talk about Klue. It also makes me laugh as you listen. As I talked about Klue, we did an episode with them in the past if you'd like to learn more, and Sean , I laugh because every time I talk about Klue I do the gesture of eating food. I don't you can't see me but every time I mentioned it, I think that's because that's how it was explained to me when they first demonstrated it. It's a really interesting technology. But that'll be in not just pens, you're planning on using that in pumps as well.
Sean Salmon 12:53 Yeah, so you know, Klue actually runs on on a wearable. And then it talks to the algorithm that's either you know, on your phone for your pen, or can be the algorithm that's driving the automated insulin delivery system. So think of it like a sensor, and the sensor gives input so that the algorithm knows what's happening. And it lends itself to any means of insulin delivery.
Stacey Simms 13:15 One of the big concerns and you know this when a large company buys or acquires a small company or product the big concern is that you know, it'll be shelved or there will be big changes to make it more proprietary. The in pen is now used with Dexcom and the ever since implantable CGM. Can you reassure people who are using it right now that you're not going to change that I assume it'll be used with a with a Medtronic sensor, but will you continue with the sensors that it is integrated with right now?
All right, right back to Sean answering that question. But first diabetes Connections is brought to you by Gvoke hypo pen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvokek Hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the G voke logo. gvoke should not be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to Sean , talking about Medtronic plans to continue in Pen with its current partners.
Sean Salmon 14:44 Yes, we have no plans to take away anybody's sensors from them. But we're not entirely in control of that. So if if sensionics and Dexcom plan to maintain that access and then we're game we want to make sure that people have the support they need
Stacey Simms 15:00 When you say you’re not in control of it, you’re talking about what Dexcom and Eversense would do, you're not talking about something on your side.
Sean Salmon 15:07 No. So the way all this works is you have to have, depending on what platform of phone you're dealing with, you have to have a thing called an API, which is basically a hook of software into the algorithm. So somebody on Sony decides they don't want to have that access to the longer they can turn it off. But we're not going to turn it off. We don't have control over that. So our belief is that, you know, if we're meeting patients where they are, and they're on a Sensionics device, we should maintain that access for those patients. Of course, we want to open up access to our own CGM. So we have a lot coming in the pipeline for CGM, which is pretty exciting. But no, I understand the sentiment that when you a large company buy something that they want to shelf it This isn't like big oil buying biofuel. Right now we're, we think we're gonna bring a lot better experienced to patients by combining the best of what companion has developed an impact with what we're endeavoring to do with things like Klue and neutrino and a lot of other personalization algorithms that be used in the closed loop side.
Stacey Simms 16:08 So let's talk about sensors. Let's just pivot right to that first, though, before we let this whole thing go within any timeline and integration with the guide. assume it's with the Guardian, CGM.
Sean Salmon 16:17 Yes, so initially, we'll have Guardian, but there's no we have three or four, five actually different generations of sensors coming and it's going to be compatible with everything we develop going forward as well.
Stacey Simms 16:30 Let's talk about Guardian Connect. This is the standalone CGM doesn't need to be paired with an insulin pump. Tell me a little bit about the reception of that, what the plan is for it. And you know, Who is it for?
Sean Salmon 16:41 Yes, so I think a standalone Guardian has been sort of an on ramp to be able to use an integrated CGM with our pump. But frankly, I think the experience that we've provided with that needs a lot of improvement. That's what we're endeavoring to fix with the pipeline. And there's two parts to that one is finger sticks, you know, to, to calibrate or to confirm before dosing as required finger sticks, and that's something that we are trying to remove in the next generation. And the other one is on just the, the ease of putting it on. And it takes a lot of overtaken steps to insert, and generates a lot of trash in the process. So all of that's problematic. And we're, we're moving to an integrated platform where the sensor, and the transmitter all in one, easy to apply three step, just press it on your body kind of approach. And in the interim, reducing or eliminating the need for finger sticks. That's what the near term pipelines about and then longer term, we can take the size of that down even further, we're already taking about 50% of the volume down from one move to next, we can get a lot smaller than that we have some really interesting technology that uses something called a wafer fabrication, which just means you can make very small electronics in a very highly repeatable way. So you take a lot of variation out. And then of course, you know, making sure that we're continuously improving the reliability and the wear life of these devices. There's a lot of technologies we have aimed at to to ensure that that happens. And simple things like we spend a lot of time money and effort developing patches is going to stay there, you know, the adhesive that won't interfere with the skin, but will stay there through very difficult conditions. And it took a lot of engineering, we actually did a lot of work in the fields in South Florida, just you know, high humid, very hot heat to make sure that we would have this he's up just right. So there's a lot going on in the CGM side of things. That's pretty intriguing.
Stacey Simms 18:40 I'm curious, and this is a very specific question. These future generations, any plan to go straight from a CGM sensor to a watch, that's something that just seems to be very difficult, you know, no phone involved in between? Nothing like that.
Sean Salmon 18:55 Yeah, no, it is difficult. And it's difficult for a lot of reasons, including power management of how that that Bluetooth connection is different than one to a phone. So I think as as watches evolve, and maybe that technology changes and the ability to kind of talk a lot of this on the kind of wearable side of things. It's not entirely just what can you do with your CGM, your algorithm said some, it is more complicated than you'd think, you know, hopping from phone to watch that takes the processing power and the connectivity that's already there. But think of it like a highway, right? There's like so many lanes have a highway that you can drive a car on. And if the watch is already tethered to one, one connection by Bluetooth to your phone, you've got fewer lanes available, other connections. So that's really, you know, it's I don't get too technical about it. But that's really the the near term challenge. But you know, I think there's strong interest in this. And as the wearables progress, I think we'll have the opportunity to to do things like that. But right now, it's just complicated.
Stacey Simms 19:56 All right, let's talk 770 g This was approved by the FDA in August, and it's down to kids as young as two, my understanding was for the approval. Now I'm this is gonna pardon my take on this. And this is for all of the pump companies. I wish you guys would call your pumps, something that told us more about it. I don't know if it's a medical device thing, and I have this problem with Omnipod and Tandem and everybody else. But you know, it's all numbers. So tell us a little bit about what's different from the 770 g to the 670. And then to the 780. Like, right, what's different about this pump?
Sean Salmon 20:33 Yeah, so the the biggest difference other than age education, which does, you know, it's still indicated for people over the age. I think there was some confusion at first said it's just for kids, and it's not Oh, kids. Yeah, so I, you know, I think that the biggest difference is really the inclusion of Bluetooth connectivity with this with this device. And that does a number of things. So first and foremost, it allows a person or a parent or caregiver to see the CGM pump date on a film. So we we've been lagging in that competency. Now that's available. It also allows the carelink system which is our management system glucose to automatically update so that you can do things like telehealth visits, right. Or if somebody's going to the doctor's office, rather than that, that kind of interruption to the workflow where the pump has to be connected and then downloaded, that really slows down that visit for for the person that's, you know, at the visit, it slows down the workflow for the health care providers. So the ability to take that connection and automatically upload it at your convenience without having to do anything, is what that connectivity brings to us as well. And then finally, it goes all the way to we can when software becomes available, make upgrades. Or if you have to patch something knows you know how to get out of your phone, where they'll have a new version to patch up something, you can just push that over the air. So we have that capability to upgrade future algorithms without having to connect anywhere.
Stacey Simms 21:59 So just to be clear, this is like what we do with the Tandem X2, you plug it into the computer, you get the latest download, it changes the software in the pump, and then you're off and running. Same thing, plug it in,
Sean Salmon 22:09 that was what one big difference, we'll plug into the computer, it goes over the air, just like you can update your unit up to your phone over the air today. If you changing your operating system, it's the same idea. You can do this without having to have a computer or having to plug cable in,
Stacey Simms 22:24 do you need a doctor's prescription for changes? Or is that a change by change? I would assume there might be?
Sean Salmon 22:30 Yeah, it depends on the change. So if you're talking about, you know, a security patch, you don't need a prescription for that, if you're talking about moving to the next algorithm, like the difference from 770 to 780 is really an algorithm change. It's the same hardware platform that would require a prescription.
Stacey Simms 22:45 So let's talk about the 780 which is the I assume this is the next thing in the pipeline and following the numbers.
Sean Salmon 22:52 Yes, so we we have released the adult data for the 780G, which at is about the algorithm now at the American Diabetes Association began this year virtually. And really, there's a couple of differences here. What this device does now is it takes the Ability Beyond just basal insulin, but also to bolus where you can the situation where there's rising glucose, the algorithm can bolus every five minutes to control. Somebody maybe missed a meal bolus, so they miscalculated how many carbs they ate, for example, and blood sugar still rising, we can predict where it's going to go both correct it without stacking up insulin. So what all that means is we can drive better time and range when there's there's missed boluses or miss calculations on carb counting. That's one big difference. The other big difference is the target that you set these two, so you can set a target, as you may know, on the 670 G, the target you can set is 120, we can still set a 120 target on this algorithm. But we can also set that target of 100. And the clinical results that we showed, were clear that you could take the target lower without increasing the risk of hypoglycemia. In fact, it was so numerically lower rate of hypoglycemia. So this, this algorithm, I think really gives a lot more freedom. And that's, I think the biggest thing that we were looking for all these are great, you know, time and range, we've been leading that the industry and being able to provide the best time and range, but the user experience got a lot better. And a lot of it had to do with alerts and alarms and all the things that we did. And I think To put it simply, there was a belief as the first hybrid closer algorithm out there, that whenever something goes awry, that you should kick somebody out of what was called auto mode and have them go confirm something with like a finger stick. Because I think the belief at the time was that you know, you can't trust his algorithms take care of somebody, and a person is better off better able to manage their diabetes than a machine. And I think that was probably a fallacy. As it turns out the algorithm that what we change here is we just aren't kicking people out. We are waking people up in the middle of night do things the algorithm pretty good at smoothing things out without causing any new troubles prevention. So a lot of that, I think out of abundance of caution safety alerts, kicking people out asking for fingerstick calibrations was unnecessary. And we're seeing a big reduction in all of that and very high satisfaction among the people in a clinical trial. And we've launched it in a limited way in Europe so far, and feedback has been really tremendous. This is a very big improvement of what we had been offering a couple
Stacey Simms 25:25 of just questions for clarity, Sean , the you're talking about the algorithm in the 780? Right, the 770?
Sean Salmon 25:32 Yes, that? No, that's 770 is basically the 670 algorithm. The big difference is really that indication of age, as well as the the ability to upgrade
Stacey Simms 25:44 software. If you want a pump right now that you can then upgrade when the new 780 algorithm is available. It's got to be the 770 you can't upgrade. Yes,
Sean Salmon 25:54 yes, you're correct. Okay.
Stacey Simms 25:56 Um, to that end, just again, just to clarify, are there other ranges you can set? Is it totally customizable down to 100? Or is it 120, or 100.
Sean Salmon 26:06 So you can choose, you can choose either target, but you can adjust other settings like the part ratio like insulin sensitivity factor. So there's some customization that can get there. And we ran, I think, three clinical trials. And we're currently doing what we call a continued access study in the US where we're trying to optimize those settings, to make sure that we can get the very best experience for people with the pump. And I think what we've learned is there's a lot of these other settings that we can give more help to the endocrinologists to be able to set those but right now, those settings are, are the endocrinologist job to go fix, we can give them suggestions. But the user themselves can't make those adjustments as easily.
Stacey Simms 26:46 Wait, I'm confused. The endo can make some changes, but the users can't.
Sean Salmon 26:50 Yeah, so there's certain things again, it's about making sure that people are safe, where we could recommend changes, or the algorithms can change things along the way. But there are certain settings like these carb ratios and everything else that need to be dialed in. Yeah, but
Stacey Simms 27:03 the user can do that. Right. I don't have to bring the pump to my endocrinologist and say, I Well,
Sean Salmon 27:07 they can, but they should they should make sure that you're talking to
Stacey Simms 27:11 Got it, yes, no, no with it with the guidance of an endocrinologist, but you're not going to make me get a prescription to change my carb ratio.
Sean Salmon 27:17 No, no, no, I think it's just that we can really fine tune the system. But rather than experimenting on yourself, I think we can give some help to know what are the optimal settings for you. And that's know something we call personalized closed loop is, we could do that automatically in the background without anybody talking to anybody. That's one of our future pipeline projects, we can also tell you from the history of your glucose and insulin data, how you can get a little bit better precision for somebody. And I think that's what we're trying to do on the carelink side of things. Here's the ability to really dial this in the right way. I think that for some endocrinologist, that's not going to be helpful, right? They're very, very good at this to do it all the time. And then there's others who don't really have large type one populations. And they could use a little bit of light called the teachers edition of the textbook, to help them make sure that they're doing the best for patients.
Stacey Simms 28:08 I think that sounds wonderful. I just think, you know, this podcast audience is a little bit different, or I shouldn't, it's a lot different. This is an incredibly well educated audience that is going to get a pump like this, and mess around with it themselves at home and see how much they can change it. In fact, as you know, part of this audience is going to physically try to probably break into the pump and see what they can do with it. So I know you can comment on that you don't have to comment on it. But that's why my hackles went up when you said the endocrinologist can, but I get what you're saying for the vast majority of people with diabetes, the endocrinologist or even their general practitioner, which is different story altogether, is really going to be the guiding hand here. Just another question you mentioned with the 780. The change from, you know waking people up kicking out of auto mode, fewer calibrations, is that really in the works in terms of fewer or no calibrations or that's a hope for a future sensor?
Sean Salmon 28:58 No, that's absolutely in the works for the sensors. So we we have a product in that's complete as clinical trial and other ones very close to doing that. That eliminates or vastly reduces fingerstick calibrations? And then yeah, so it depends on the regulatory claims that we make on that specific device. And then we have two others in the pipeline that absolutely eliminate finger sticks altogether. Now, that doesn't mean that you know, if you get a reading, it doesn't make sense to you that you shouldn't go confirm it, the glucose, the blood glucose, then calibrate No, no perfect sensor. But yeah, our algorithm itself that goes into 770 cuts down by about half the number of requests for finger sticks with the same sensor. And then when we change the sensor, we can, we can largely eliminate that unless there's something that needs to be confirmed, because the reading doesn't make sense.
Stacey Simms 29:53 So is the hope that the 780G would launch with, I hate to compare it to Dexcom but let's just go ahead and do that. Cuz that's what we're all talking about here anyway, obviously, most people who use a Dexcom understand that it's not infallible, you do have to double check, sometimes, you know, you'll get a sensor error when it doesn't understand what the you know what it's getting the information that it's taking in, it'll stop working, that kind of thing. So is the hope to launch the 780G system with a sensor that's comparable to what I just described.
Sean Salmon 30:20 So it's gonna depend on where you are in the world. But the 780 is going to be compatible with past and future sensors. So you know that they may be on different timelines. And we really try to think about this like it's a system to so we've got the pump, we've got the algorithm, we've got that sensor. And the other thing we have is the tubing set and reservoir. And there's another innovation we're bringing that allows you to extend the use of that on label of that tubing set from the typical two to three days. At the seven days. We call that the extended wear infusion said that's also known as clinical trial. And the goal is to have that also compatible then 780G algorithm. So the algorithm that's on that pump, which can have all that connectivity Vantage can work with this current and future pipeline of sensors, and be upgradeable on the infusion set is all sort of in a suite of what we're trying to bring together.
Stacey Simms 31:14 Well, Boy, am I glad you brought that up. Because I have said for years, and my son has been using an insulin pump for I don't know, 13 years now that the inset is the weak link of pumping. And I know, you know, a couple years ago, we were all excited about the BD flow was supposed to be this the latest and greatest, it didn't work out so well. So that went away. Can you tell us a little bit about what you found? When I hear longer? Where insets? I think, Oh, my gosh, you know, we've all been warned about infection and scarring and don't use the same site for that long. What are you finding?
Sean Salmon 31:47 No, it's a really good question. And you know, what is it that's so magical about it? How do you get to extend it? And without getting too much detail to the simple answer is that things that are in insulin to keep it from going bad, the preservatives, if you will, are behind a lot of that sort of site reactions that you get. So we're able to take that stuff out and have just filtered insulin if you will deliver to the site. And that's really the magic behind getting extension of abuse. And you know, we did a study where we, we measured this and about 80% of the study participants were able to get seven days your body is going to react a little differently being who you are. You see that with CGM, right? Some people can wear those things for two weeks, and other people can't. Because their body's more aggressive at attacking that foreign body response, just by comparison, for three days, which was our control arm 70% of people got to three days, right? So we've got a higher proportion of people able to make it seven days, we think it's largely due to getting out those preservatives that are the insulin to keep it fresh.
Stacey Simms 32:50 That's fascinating. It's simple as a filter. I've always thought that yeah,
Sean Salmon 32:54 it's not it's no, it's also your insulin is a very sensitive molecule too sensitive to temperatures, you know, and it's also sensitive to you know, how it's contained in the reservoir. So our rigid reservoir system doesn't like mechanically damage the molecule either. So that's, you know, an advantage that we've always had with our reservoir design, then you add to this, the ability to filter out the preservatives, and you get this extension to where so you can preserve a lot of insulin, use a little more judiciously, and of course produced it. You know, the difficulty of having to change your set every day. Maybe it's a fusion set Sunday, you change it once a week, and maybe same time of changing your your sensor as well. Who knows?
Stacey Simms 33:34 Well, I think that would be pretty amazing to have a longer wear inset. That works. Because a lot of people have trouble as you said, getting to three days. Yes. One of the big questions that came up in with my listeners when I told them I was talking to you, and we've covered most of them. But one of the big questions came up was Medicare, in terms of this technology is great. Will it be covered? Can you speak to that at all?
Sean Salmon 33:53 Which which part of Medicare you asked about? Are you asking about the Well, let's talk Yeah, more of a?
Stacey Simms 33:59 Well, I think the real question is everything. But let's talk about the the system. As you mentioned, you talked about it as a system, the 780 will the system be covered? Or will it be piecemeal?
Sean Salmon 34:09 Yeah. So the rules of Medicare are really around the designation of the sensor, can you make a claim of what's called non adjunctive, meaning that you know, you don't you don't have to confirm the CGM ruling before you dose insulin. So when you're 64 years old, and your pre medic quick care and you're on like a 670 g system today, your commercial insurance pays for the sensors, the tubing sets, the reservoirs, of course, did initial investment in the pump. When you turn 65 and you move to Medicare, you no longer can get the Guardian sensor paid for because we don't have that designation. For Non exempt. They've even though it's clearly driving the pump all day long every day. So we have to get that labeled claim for the sensors for everything to be covered. And that's what we're trying to do right now with the Guardian sensors and of course, the future pipelines. themselves. But like I think it's a, there's a couple different efforts on that. But it is a little bit of an idiosyncratic thing that that exists in Medicare itself, just the way the payment law works. And we're trying to get that changed,
Stacey Simms 35:14 has COVID, delayed studies, submissions, things like that for you, while
Sean Salmon 35:19 at the branch of the Food and Drug Administration that regulates diabetes face is also involved in a lot of things COVID related, including like the in vitro diagnostic testing, and that sort of stuff. So yes, I'd say on the medical reviewer side, in particular, there's been just a difficulty for them to service all the kind of pre market or new devices that are coming through while doing this difficult work of making sure that all the COVID tests and things related to that are done. So yeah, there's been something that has been a little bit challenging. And of course, in the clinical trial environment, we actually had a couple of trials going on during COVID. And some of them have gone pretty well. Honestly, I think people are stuck at home and not willing to participate the trial. It's not been like that. In other parts of Medtronic, we've got a lot of the hospital based studies have been very difficult and highly impacted by understandably, people's fear of going to a hospital for for anything right now is pretty high. So I'd say it's been a mix. Like we've had really good collaborative conversations with FDA making sure that we streamline and make it as simple as possible as we submit new dossiers. But there is really a constraint at that medical reviewer level that's been, you know, difficult for the entire industry.
Stacey Simms 36:35 You've been so generous with your time. I really appreciate it. I just have one more question for you here. And that's about tide pool, about a year ago, maybe more now, Medtronic and tide pool announced that they'd be working together on a, you know, a future interoperable, closed loop. And it would be a separate system from the seven at any update on that.
Sean Salmon 36:55 Yeah, we're worth continuing to work with tidepool. There's a joint steering committee that we participate in. Our goal here is to create a Ace designated pump that runs the tide pool algorithm. But yeah, that collaboration is ongoing. We're working well with them. But I don't really have an update on that.
Stacey Simms 37:13 Well, Sean , I really appreciate it. There's so much going on. Do you know to talk about and thanks for keeping us straight with the numbers and everything else. I hope you come back on and you know, continue to explain all of these developments. But I really appreciate it. Sean , thank you so much for spending so much time with me for sure.
Unknown Speaker 37:28 Thank you, Stacey.
Announcer 37:35 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 37:41 We talked about a lot of stuff there. There is a lot more information as always over at Diabetes connections.com. You can learn more on the episode homepage about everything that Sean talked about. I'll link up some stuff to Medtronic into some other studies. I said a couple of weeks ago, there's something about September, October. It's like all summer long. Yeah, we have the ADA and we have the different conferences. But then every year at this time, I feel like oh, it's kind of slow, nothing's happening. And then I get all the tech companies in the fall. So I'm excited to continue to bring you as much information as I can. I have more interviews coming up. We just talked to Dexcom. I'll also be talking to Abbott. I'd love to get Omni pod that folks from Insulet back on here. So we'll we'll see what we can do. But in the weeks to come. definitely let me know if there's particular technology you want to hear more about. I love talking to these companies. It's always fun to get a kind of a peek under the hood. And I like hearing the voices and the stories of the people who are in charge of this stuff. I appreciate them coming on not everybody does you know that but it's great when they can answer your questions. And I love doing that. So let me know if you want to hear from and let me know what you want to know. All right innovations in just a moment with that once a week basal insulin that's being tested. We'll we'll talk about that. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years when it hit us full force a little early. I was so glad we had Dexcom you know Benny's insulin needs. I've shared this. They started going way up around age 11. And when I say way up, I know some of you parents out there with little ones think maybe we increased by point two or something like that, because I remember those days Benny's first basal rate was 0.025. That's how much basically got an hour. But by the time between ages 10 and 12, his basal rates doubled. And between 12 and 13, they doubled again. So along with the hormone swings, I really can't imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's A1C and overall health. And by the way, he's almost 16 and those insulin needs have already started going down. This is wild. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter To make diabetes treatment decisions to learn more, just go to Diabetes connections.com and click on the Dexcom logo.
Innovations this week, a once weekly, basal insulin. This is something that was announced earlier this summer. I don't know about you, but it's snuck by me It was announced at the ADA Scientific Sessions, Novo Nordisk announced that a once weekly insulin Icodec had performed as well as Lantus in a 26 week trial. Now, this particular study was done with people with type two diabetes. But before you dismiss it, there has already been a trial of people with type one diabetes, and novo expects to submit and get this and hopefully FDA approved for people with type one and type two diabetes, I couldn't find a lot of information about the previous trial with type one, there is another one that completed over the summer, hopefully, they'll release the information on that maybe some of you who are more savvy in the ways of clinical trials can dig it up the Can you imagine once a week basal insulin, I mean, obviously, the benefits of that would be incredible. And also thinking about it for people who like to go untethered using basal insulin from an injection along with an insulin pump, which is something we did for two years. And even with control iq and you know, more advanced hybrid closed loops. Just talking to Medtronic about there's, I know a few people who like to use untethered with it, who find that there's just something about getting that always constant, steady, basal insulin smooths everything out. And certainly when you get into the enormous elephant doses that Benny was taking for a while, it helped tremendously to take that load off of the pump. I mean, between his weight loss and you come in at a puberty and I know he loves when I talk about this stuff, his insulin needs have come down incredibly, and certainly to the point where we didn't need to stay on untethered, but I think it's fantastic, it's a great option to have and once a week, basal insulin makes that a lot better. So I will keep you posted if I find out more about the type one trial, but is called insulin Icadec. If you have something for innovations, please let me know this can be a hack that you thought up a tip or trick something with technology or new influence. You can always email me Stacey at Diabetes connections.com. I mentioned Benny's 504 Review earlier in the show. And that happens later this week. He's also got an endo appointment this week. lots going on. I don't think the endo appointments going to be too exciting, hopefully. But you know, we do check in every quarter. And I think to mix it up, my husband is going to take him this time. Slade rarely goes to the endo usually because he's working in busy and and it's been on me for the last couple of years, which I love to do. I really like catching up with our endocrinologist who's become a friend. But I think I'll let the boys go. And gosh, you know, another reason not to go. I'm looking at making sure my door is closed. So Benny can't hear me. You know, the kid has this permit, and he's gonna be getting his driver's license if he passes in January. And I know Slade will let him drive to Charlotte, which is like a 40 minute drive. So he can do that. I don't need that stress of sitting in the front seat and putting the mom's seat belt right throwing my arm out, which I cannot believe I do. But I've done it with both of my kids. Oh, I remember my mother doing that clear as day. I don't even know if they're doing driving tests here. They haven't been. I know plenty of kids who got their licenses this year, because of COVID. They're not actually giving them a driving test. They're just saying, oh, did you do your hours? Alright, here's your license. And it's a graduated system here in North Carolina. So they can't get their afternoons they can't drive at night until they take an actual driving test. I don't mind goodness. All right. So let's keep you posted and updated on next week. We'll see how much he lets me share. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Don't forget if you want the free audio book, email me Stacey at Diabetes connections.com subject line audio book, and the first two will get that promo code. Thanks so much for listening. I'll see you back here next week. Until then, be kind to yourself.
Benny 44:03 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged | |||
| 15 Jun 2021 | "The System is Designed to Learn" - An iLet Update from Beta Bionics | 00:46:14 | |
We are very excited to catch up with the folks from Beta Bionics! Their fully automated bionic pancreas is called the iLet. They are getting closer to submitting to the US FDA and were able to give us an update on some of the most anticipated features. Kate Farnsworth is a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. She walks us through what makes the iLet a very different insulin pump, including: a system that only needs the user's weight (no basal rates or carb ratios), software that will learn from the user and make adjustments, how the system charges, waterproof status and much more. All dependent on FDA approval. Kate's daughter was diagnosed at age 8 and we first spoke in July of 2015 about Nightscout. Past episode with Beta Bionics: This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription below
Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, catching up with Beta Bionics . Their fully automated bionic pancreas, called the iLet has some new features not available in existing devices. And that's helped to ease the burden of diabetes in new ways. Kate Farnsworth 0:33 Working for companies like Beta Bionics give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.
Stacey Simms 1:02 That's Kate Farnsworth a well known name from the DIY community. Now with Beta Bionics . She'll give us the latest news on the iLet’s development and share some personal stories of her family's journey with type one. Also this week, a big anniversary for the show, as well as for some of our listeners. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, always so glad to have you on, we aim to educate and inspire about diabetes with a focus on people who use insulin, guys, it has been six years of Diabetes Connections this month, work six years I started in June of 2015. It kind of snuck up on me to be honest with you. I had started the show in May of 2015, actually, but it was just audio that I put on my blog. We didn't get accepted into Apple podcasts and all the rest until June. So that's where I'm marking it from. I had been working on it for months and months. And I kind of wish I had started earlier. But hey, I'm thrilled with how it's gone. Almost 400 episodes now, so many of you wonderful listeners who I hear from all the time. Thank you so much for sticking with me. And if you could just do me a favor, the best thing you could do, I'm not doing much to celebrate this anniversary, I'm not doing a big thing on social or anything like that. But if you could do me a favor, just share the show, share this episode, share whatever episode you like, or just share a link to Diabetes connections.com on your social media, you can put it on your own timeline. Better yet share it in the diabetes Facebook group. It really does help get the word out. You can leave a review that's always fun, but sharing the show itself or telling somebody about showing them even to this day, how to listen to a podcast really goes a long way. So will we be here for another six years? I don't know, man. I hope so. I'm not slowing down. I'm really excited about where we're going. And I love talking to people like my guest this week. Alright, let's get into it. My guest is Kate Farnsworth. She's a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. Many of you know Kate from the DIY community. Her daughter was diagnosed at age eight, and we actually first spoke she was on the podcast in July of 2015. Just after we got started, we talk then about Nightscout she helped so many people get watchfaces set up back in the day among so many other things that she did. Now she helps run the Facebook loop to group with 10s of 1000s of members. Now the iLet, as many of you know has been one of the most heavily watched and anticipated devices in the diabetes space. First human testing was done in 2008. At Damiano the company founder has kept everybody up to speed over the years he has been very public showing the progress in presentations at conferences, and he's been on the show a couple of times himself, I will pick up those older episodes. for newer listeners. The iLet is meant to be a dual chambered pump. That means it will hold and infuse insulin and glucagon to help achieve better time in range. Just so we're all clear. Putting glucagon into your body isn't like eating sugar or infusing quick acting sugar like glucose or dextrose. Very simply put, injecting glucagon or infusing glucagon stimulates the liver to convert its stored glycogen into glucose which it can then release into the body. The eyelid is being designed with two cartridges and two infusion sets one each for the insulin and glucagon. But the plan right now is to move forward with just the insulin so just one chamber like a quote regular insulin pump for now. I know that was a lot but after Kate and I finished the interview, we realized that a quick description like that and some information about glucagon because I still explain it I still have a lot of people who are newer in the community who don't quite understand. So I really hope that that helped. Okay, a lot more in just a moment but first diabetes These connections is brought to you by Dario health. And we first noticed Dario a couple of years ago at a conference, and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed, you'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity. Find out more, go to my dario.com forward slash Diabetes Connections. Kate, thanks, thank you so much for joining me, Boy, am I excited to talk to you.
I'm so happy to be here. Before we jump in, my listeners know that I promised this year that in 2021, I was gonna be very heavy on technology. There's so much in front of the FDA, there's so much going into pivotal trials and heading to the FDA that I thought it would be so easy to do all of these interviews. But I realized as we got further along that the very timing of all of this makes it very difficult for the companies to actually come on and share a lot of information because you are limited in what you can say and understandably so. So before we even get started. I know you have a disclaimer that you're probably going to bring out a couple of times during the interview. But why don't you go ahead and say that now.
Kate Farnsworth 6:21 Thanks, Stacey. So the iLet bionic pancreas is an investigational device and it's limited by federal or United States law to investigational use is not available for sale
Stacey Simms 6:34 as we go forward. And as you listen, I should also let you know that I've given Kate the opportunity as I did when I talked to Howard look from tide pool or you know anybody else who is in this phase of their device or technology, the opportunity to kind of let me know when I've crossed the line. So I may ask a question that you can't answer, Kate. But um, I think we all we kind of understand where we are. So I appreciate that. All right. Having said that, give us the lay of the land, if you can, where is the iLet? In terms of development, let's go high level as far as we can right now.
Kate Farnsworth 7:07 Okay, so Beta Bionics is the company behind the iLet. And we're really different company because we're a certified B Corporation and the public benefit corporation. And that means our company is measured by an independent resource based on how our company's operations and business model impacts our workers, our community, our environment and our customers from our supply chain and input materials to our charitable giving an employee benefits. B Corp certification proves our business meet the highest standards of verified performance. For Beta Bionics . That means the people with diabetes and their loved ones have a seat at the table in our decision making. In that context that we're working to bring the commercial version of the iLet to market. There is currently a pivotal clinical trial testing the eyelid and people living with type 1 diabetes ages six enough. This trial is large and involves 17 different clinical trials sites across the United States. results from this clinical trial will potentially support our application to the FDA for regulatory clearance of the insulin configuration of the device in that population. Once the FDA application is filed, FDA review of 510 k market applications typically take about six months, which includes 90 days of FDA review time and time for response to questions that may come up during the review.
Stacey Simms 8:39 My understanding is that the iLet is a device it's we're talking about an insulin pump here. And I guess what I would call an artificial pancreas or hybrid closed loop system, where it communicates with a CGM to help you stay in a certain range. But the island has always been talked about as needing minimal input. In other words, last time I talked to Ed he was talking about you put your weight in. And that's really the only information it needs from the user to get started. Is all of that still the case? Is that what's in these pivotal trials?
Kate Farnsworth 9:09 Yeah, so that was designed to be initialized by weight alone. It doesn't require users to set curry shows or basal rates for instance, insulin sensitivity factors, the system uses your weight as a starting point and then learns quickly what your unique responses are based on CGM values that receives every five minutes. So with that in mind, we hope that once the FDA clears it, the iLet can be an automated insulin delivery device that requires very few inputs from healthcare providers and people with diabetes or caregivers. For us this solution isn't just about the feature is it's about the benefit that it could potentially give people reduced cognitive and emotional burden. You might recall Adam Brown has talked about the 42 factors that impact blood glucose at Ada conference and in his book bright spots and landmine, those of us in the community can definitely relate based on our own experiences. There are a number of diverse factors that pay people with diabetes on a whim, combine that juggling act with up to 180 diabetes related decisions that people with diabetes or their caregivers make each day. And we really do have a cognitive and emotional workload that those living without diabetes don't face. So our hope is that the iLet is cleared may reduce that burden, since it's offering a solution to type 1 diabetes management without the same numerical input as traditional employment therapy.
Stacey Simms 10:43 Can you speak to the idea of just entering weight and like announcing meals, I mean, I think for those of us my son's used an insulin pump since he was two. So we're coming up on, we're coming up on almost 15 years of using an insulin pump. And the idea of interacting with it less is a little bit mind boggling. You're a mom of a person with type one, you have a child with Type One Diabetes, can you just speak to that idea? You've already talked about the burden being lifted a little bit, but is it difficult for people to kind of wrap their brains around and the reaction of when it does work as well as
Kate Farnsworth 11:16 we assume I can't speak about the clinical trial right now or the results that we're getting. But what I can tell you as a mom of a child with diabetes, is that the cognitive and emotional burden that she feels just having to constantly worry about her diabetes is immense. And I think that we even as parents don't fully understand, you know, how much our kids have to think about diabetes, how much it impacts every moment of every day, and interacting with friends or going out or making decisions on whether or not they're going to sleep over at a friend's. And if there was a device that could potentially relieve some of that burden to me, you know, that's huge, that would be amazing for my daughter. So with the eyelid, when you're entering a meal, you would select whether the meal is the usual amount of carbs for you more or less, it's designed not to require you to count the actual number of cartons over time, the system's designed to learn what that means to you personally. So for my daughter, for example, might have a totally different usual meal than your son. So the system is designed to learn and adapt to each individual user. While there's, you know, that's the practical application. There are other considerations for wide the eyelid has been designed that way. There are 1000s of Americans who don't have access to an endocrinologist, we want him to engage them, we want to meet them where they are and help them get closer to their diabetes goals. I feel passionately about improving the lives of people living with diabetes and easing the burden they live with every day. And research has documented racial and ethnic disparities in diabetes treatments and outcomes. Technology uptake, for example, is much higher for white youth than black or Hispanic youth. As a public benefit corporation. Our goal is to get our solutions to as many people as possible. So we're actively exploring how we can reach the underserved populations and hope to be able to provide all people with diabetes, the same level of care,
Stacey Simms 13:33 I want to make a note and come back to that because there's been such a wonderful, I don't know how to say it, I want to make a note and come back to that. Because years ago, we talked about the DIY community, how it was reaching so few people, it was such a great benefit, but really not for a lot of people. And so many of you are passionate and wanted to bring this commercial product out. And now it's being done. So I'm gonna I want to follow up on that in just a little bit if I could, but let's continue to kind of talk about where we are, thank you. But the idea of no carb counting, to me, would be such a relief, because one of the shocking things that happened in my brain was within the first year of Benny being diagnosed, I think he was too he wasn't eating as much food as he does now at 16. But we realized that carb counting was so inexact and such guesswork, because you could try to be as exact as possible at home. But then you would go to a restaurant, and you really had no idea. And as you listen, my husband owned and operated a restaurant for many years. So you can tell somebody, this dish has this many carbs in it. But first of all, restaurants put so much more butter and fat, and seasonings and things in your food because that's what makes it taste so delicious at the restaurant, which affects how it breaks down in your body. But also, one person can make it to the next day even at a fast food restaurant, it's not going to be exactly the same. So what was the thinking behind it? Is it really just to make it easier on people or did the researchers and the founders here also kind of think that carb counting really isn't that exact
Right back to Kate answering that question, but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can't be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I am grateful we have it on hand, find out more go to Diabetes connections.com and click on the Gvoke logo. gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com slash risk. Now back to Kate answering my question about the inexact science of counting carbs.
Kate Farnsworth 16:03 Yeah, carb counting is not very accurate. People are notoriously bad at carb counting, my daughter might be looking at her meal and see 15 carbs, another person with diabetes might count those curves completely differently, it's really helpful to be able to look at your plate and say, you know, this is usual for me, or this is more for me, this breakfast is way more than I would typically eat. So I'm gonna let the system know about that. Rather than counting the exact numbers in that restaurant meal.
Stacey Simms 16:43 I could talk about that for an hour. That to me is so revolutionary Benny the other day, we got these big cookies, which is you know, a real tree. We don't eat a ton of junk food, but we don't eat super low carb either. But there were these giant chocolate chip cookies. And he was higher than usual later. And I just asked him, I'm like, Hey, I'm just curious, because I don't look at everything he eats or talked about every bolus anymore. So what did you think those cookies were? And he said, Oh, I think it was I think I put in 35. I was like, dude, those were like, 65. Easy, right? And he was what I did. He's had diabetes for 14 years. Right? It doesn't mean he's a bad person. He just didn't. He just took a guess.
Kate Farnsworth 17:19 Yeah, exactly. Exactly. We have the same with my daughter. I don't manage her diabetes, you know, as actively as I used to when she was little, but occasionally I'll ask her, you know, how many carbs Did you think were in that, and then we'll compare it to the package. One really big example that we have, we have those flat pretzels, and they're in a big container. And she'll just pour herself a bowl. And, you know, she guesses on how many carbs are in that bowl. But one time we actually put it on the scale and calculated and she was 45 carbs consistently, because she had been doing this for some time. And I know the same thing happens with cereal, for example, once we move past that carrying a scale with us phase, our eyeballs are the judges and they're not very good. So yeah,
Stacey Simms 18:10 I think some people listening might be saying, Well, why don't you carry scales with you anymore? What kind of parents are you, but I got to say I'm not into adding any more diabetes burden, then we need to so I'm thrilled with letting technology replaced my brain on this, you know, control IQ has done a wonderful job for us and really helping and you know, what you're talking about is only going to help as well. So the big question with the iLet has always been about the dual chambered pump. This was a pump that years ago was talked about and I know you're still working toward a dual chambered pump with insulin and with glucagon in it, but my understanding is that what we're talking about today, what the pivotal trials are all about is insulin only. Can you talk a little bit, just kind of give the listeners an update on what we're talking about in terms of the one chambered pump and what you're working toward, with the dual chamber pump.
Kate Farnsworth 19:00 So the iLet’s designed with two chambers, one for an insulin cartridge and the other for our glucagon cartridge. Her initial device after an FDA clearance will have the insulin chamber available to users while the glucagon chamber will not be usable. Once the dual hormone configuration has been also cleared through the FDA through a subsequent 510 k application. The glucagon chamber will also be made available to users. Our hope is that it would be the same device just the second chamber would then become available.
Stacey Simms 19:34 I understand you may not be able to answer this. But if and when it becomes dual chamber pump. The hardware as you say would be the same. Is it just a question of software updates or is that looking too far in the future?
Kate Farnsworth 19:47 It is my understanding that it will be a software update. But we definitely are getting ahead of ourselves there. We have to go through the whole FDA and 510 k application for that company.
Stacey Simms 20:00 Got it. Okay. I'll be I'll tread lightly on Be careful on that. Of course, a couple of weeks ago, I talked to the folks at ziggo log, which I'm still not sure I'm saying correctly, which is the glucagon that I believe you all are working with.
Unknown Speaker 20:19 Is that still the case?
Kate Farnsworth 20:20 Yes. Yes. So we are working with Zealand to provide the glucagon that will be used in the clinical trial for the by hormonal device. And they recently got approval for adaptive glucagon for the treatment of severe hypoglycemia. And they're marketing it under the brand name Tagalog. I hope I am saying that.
Unknown Speaker 20:42 I think we're good.
Stacey Simms 20:43 I guess my only question on that, because I know it's a separate company. But it was so many years that we were waiting not just for the eyelid, but we were waiting for that shelf stable glucagon, so we didn't have to emergencies or for low treatment, reconstitute or kind of open that red box or that orange emergency box. So it was a big relief in many ways when the different types of shelf stable glue gun were approved. I mean, there's three options. Now, I know you can't speak in detail about a lot of this. But I got a question from a listener about how this would work. And the question wasn't so much about the mechanisms or the software. I know that's proprietary. But the question was, you know, it's always risky to use glucagon too much, right? It's also why we don't want to have too many lows in a row that your liver has to help out with because you can deplete the glucagon supply. And I'm curious, this listener wants to know, is there any danger of depleting the body's own sources if you're always giving it from an external glucagon, injection or infusion?
Kate Farnsworth 21:49 So we're deeply aware of the risks of severe hypoglycemia until we know more from a pivotal trial, it would be best at that question to an MD with expertise in glucagon storage and depletion. But what I can tell you is that we're partnering with seeland to provide the glucagon that will be used in the clinical trial for our bio hormonal device. As you know, they recently got approval for his ecolog. And we plan to use that same shelf stable ready to use quizzes on with the island in our bio hormonal pivotal trials. It's really important to note though, that the amount of glucagon that will be dispensed in the iLet will be substantially lower than the amount dispensed in the cycle of injection or prefilled pen. That's because the ladders for severe or hypo rescue and the amount the iLet would dispense is intended to be hypoglycemia prevention. So that iLet is designed to micro dose very small amounts of glucagon as needed based on the person with diabetes CGM readings and the speed of their glucose decline. So it's really important for people to know that they wouldn't be getting a rescue dose of glucagon in that scenario. Of course, the use of Desa glucagon with the iLet will need additional FDA approval for Depo glucagon. And the iLet will also need FDA clearance for dispensing deathly glucagon.
Stacey Simms 23:12 I mentioned earlier that the system and you mentioned this as well, is working with a CGM. And my understanding is that this is Dexcom g six.
Kate Farnsworth 23:21 That's correct. The eyelid is designed to work with the Dexcom CGM, but we're open to working with other CGM manufacturers in the future. Because we understand that choice is really important to people living with diabetes.
Stacey Simms 23:36 That's great. Dexcom g seven is moving forward. I assume that as that moves forward, this iLet will move forward with it.
Kate Farnsworth 23:45 I would think that's a fairly safe assumption. Okay, good answer. Can you tell me
Stacey Simms 23:50 any details? Again? I feel like I'm fishing here. But can I can you tell me any details about the pump itself? You know, we've got Omni pod, which has the remote PDM that is used with it. We have Tandem, which has buttons on the pump, and they're hoping to get bolus by phone pretty soon. Is the eyelid buttons on the pump? Is it a phone control? Anything you can tell me about that?
Kate Farnsworth 24:13 Yeah, so everything currently is designed to be done from the iLet itself. It has a touchscreen interface. And the infusion says at launch will be similar to the inside. So people are familiar with john caustic and our team are working on some of the potential mobile solutions for the iLet’s. And we hope to have more information about those as we get closer to launch.
Stacey Simms 24:38 I know that you have had a lot of input from the community because I've seen the the posts that you will have put out there asking for help from the community in terms of I guess what is called human factors and things like that. Can you share a little bit about anything that you've learned just anecdotally about what people like and don't like about using an insulin pump, or what you could any kind of feedback that you got along The way that might be of interest.
Kate Farnsworth 25:01 Unfortunately, I can't share that information. I'm sorry. Yeah, I can talk a little bit about the fact that we have a lot of preclinical data that's available on our website. So if anybody is interested in looking at bat, it's Beta Bionics calm, and I can't comment on the results of our pivotal trial as it's still in progress. We do hope to have those results later this year and look forward to sharing them. Our goal backed by appropriate research, and continuously advancing technology is to create a solution that people with diabetes don't have to spend so much time micromanaging decisions that impact their condition, and that they can spend more time focusing on other things in their lives.
Stacey Simms 25:51 This is another question from a listener. And this is about changing the reservoirs out and I this would be when it is dual chambered. So do you have to change them together? Or can you change out the one that is empty? And I'll add to that, again, knowing I don't know if you can answer that, you know, right now, we are all told to change out an insulin cartridge within three days, do you have to change the glucagon in a period of time as well.
Kate Farnsworth 26:16 So as designed the insulin cartridge use that the iLet can be changed actually independently of the infusion set. So you can change your insulin cartridge, but not your infusion set. And we intend to have prefilled cartridges and user filled cartridges available if FDA clear, as for the glucagon, that's one of the things we hope to uncover during the by hormonal pivotal trial is the duration that people can leave the Deathly the carton cartridge in the device, and how often it needs to be changed.
Stacey Simms 26:52 You I didn't ask about infusion sets, and I'm not a big fan of any of them on the market. I think that's the weak link of pumping. I'm not alone in that assessment. Two questions there. So when it is dual chamber, do you anticipate two infusion lines and two infusion sets? I assume you're not mixing these two together? Right?
Kate Farnsworth 27:13 Yes, we anticipate using two inpatients.
Stacey Simms 27:16 And then the other question is, can you share what you're using is? Is there a new one coming from Beta Bionics or are you planning to use one that's already on the market?
Kate Farnsworth 27:24 For our pivotal trials, we're using ones that are very similar to in test that are currently available for no medical. And that is what we plan to use that launch.
Stacey Simms 27:38 Couple other just kind of life style questions, I guess about the pump? How is it charged? Is it a battery is it is an external? How do you charge the pump.
Kate Farnsworth 27:48 So the iLets designed for inductive charging like modern mobile phones, so no cords or cables are required to charge it. The batteries designed to typically last about five days on a single charge and a full charge takes about two hours.
Stacey Simms 28:04 So wait, I think that went by too quickly for my brain. Okay, you mean like lay it on a charger? You don't plug it in? Correct? Do I have to get a special charger? Or can you use anything? Like you said a cell phone charger? I mean, no, I don't use one of those, which is why you're hear me stammering around I'm thinking like, do I get one on Amazon? Do you buy that this is easy. These are easily available for regular people.
Kate Farnsworth 28:25 Our hope is to ship you a charger with the device, but that it would also work with another charger of similar design that you might have around your house. Okay,
Stacey Simms 28:38 and is I'm probably said it's so old fashioned to everybody listening. But you know, what are you gonna do? And talk a little bit about the pump? Is it waterproof? Can it get wet? It is designed to be waterproof. Yes. So wait, now I have to ask. So like I can you can swim with it. It's not just waterproof to a certain amount.
Kate Farnsworth 28:57 So you remember those animals bubbling water displays that they used to have when they had their pumps floating in the water. So their devices were certified the same level that the iLet, we hope that the iLet will be certified to as well.
Stacey Simms 29:15 Very cool. Anybody have those old animist displays? You guys could grab those. I think I was at a display once they had fish swimming in the water once.
Kate Farnsworth 29:22 Yeah, exactly. I that's how it was explained to me by one of our engineers was the old venomous, complex the same way and they had the bubbler with the fish in it.
Stacey Simms 29:34 I think I have a photo because you know, I used to work with animals. And I'm pretty sure I spoke at an event where they had these centerpieces at a table and it was a fish tank and the pumps were ended. I'll have to search that up. And that's great. Let me ask you. I'm sure that my listeners will have many more questions about the eyelet. And hopefully we can speak again we'll get more information as it moves forward. But you and I have known each other for a long time in the community as fellow diabetes parents. Do you mind As a couple of questions about how you're doing and your daughter was diagnosed when she was what, eight, nine years old?
Kate Farnsworth 30:05 That's a incident. He was diagnosed when she was eight. And she just turned 18. Wow, she is now an adult. Oh, my
Stacey Simms 30:13 gosh, how is she doing? I mean, we've already talked about her a little bit, but it sounds like me, you have backed off quite a bit of the diabetes parenting, although we never really back
Kate Farnsworth 30:24 off. Yeah, so she's doing great. She's finishing high school, and she has been accepted to university in September, and she will be living in residence. So we are preparing for her moving out of the house in late August. Wow. Oh, my goodness.
Stacey Simms 30:42 I'm curious. Now, I don't want to get too far off the topic here. But I'm curious, did you all as a family do anything special in terms of college prep, I have a plan in mind. I don't know if I'll do it where like Benny's, second half of his senior year of high school, I really just want to leave him alone, completely, like, stop following him, you
Kate Farnsworth 31:01 know, be here if he really needs me. But I don't know, did you do anything like that. So we have been slowly transitioning and backing off as sort of naturally as the year has progressed. So she takes care of all of her diabetes management side changes all of those things without being reminded by me, which is fantastic. I have started transitioning to her ordering supplies. So I've taught her how to, you know, it's just a login to a website, and you click what you need. And they check our insurance is not very complicated. But I have walked her through how to do that, so that she has a bit more comfort with it, we are really worried about overnight, because she currently does not wake up for low blood sugars. So we've been sort of thinking through how we can do that. And over the summer, we will be backing off that and having her finding ways to get her to wake up to her low blood sugar alarms and try and manage those overnight. Because that is my biggest concern about her moving away.
Stacey Simms 32:11 When you and I first spoke, it was the summer of 2015 was the first year of this podcast. And we were talking about nightscout I can probably dig up the pictures, I had this giant setup that I slept to friends for life that I don't use on the road anymore. When we're back on the road, I'm really excited to see people again, but we talked at the time about the nightscout project and about your help to so many people in designing the Pebble watch face, you know helping people set that up. I'm curious as you look back, I mean, a lot of people from the Do It Yourself community, you already mentioned john kostik, and many others are now working in the commercial space to bring we mentioned this towards the beginning to bring what was better technology, better care. That was really only a very, very small percentage of people to the larger community. Could you speak to that for a minute, it's amazing to me to see how far everything has come.
Kate Farnsworth 33:09 I started out with a real passion for helping people living with diabetes and trying to get you know all of the technology to them. And the problem is that we reach a certain wall with the people that we can reach online, we're sort of in this echo chamber of the same people all the time. And what we've discovered is that technology uptake is much higher in certain populations. You know, I recently did a study and we're finding that people who are Caucasian or higher income are much more likely to be using these tools than the people of color and their counterparts. So working for companies like Beta Bionics give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.
Stacey Simms 34:13 When you look back at your time in the DIY community. You know what stands out to you. It was such a buzzy busy time between 2013 and 2016, or even 2017. But as commercial offerings have, frankly, gotten better, you know, I know a lot of people still use the DIY stuff, but it seems like there was an energy and there was a really, you know, a time not too long ago were folks like you were I gotta imagine your phone was buzzing all the time with people asking for help. You know, what was
Kate Farnsworth 34:45 all that? Like? Yeah, it was a crazy time. And, you know, to a certain extent, those communities are still really active. The Loop community, which I run has 27,000 people in it, you know, so there's still A lot of activity surrounding these things. But I think as the commercial solutions come around, we're able to provide solutions for so many more people that that sort of aggressive need dies down from a little bit from the DIY community, because a greater number of people without maybe the same technical expertise are able to find solutions with the commercial offering. So I always said, I would keep doing that volunteer job until a commercial offering was able to put me out of business. because ideally, you know, I hope that commercial solutions like that iLet will be able to serve the diabetes community, so that we don't have to look to DIY solutions anymore.
Stacey Simms 35:49 I always hate asking this question, because I know there's probably not going to be an answer at the end of it. But what is the hoped for timeline here? Can you tell us anything about the submission or or things like that?
Kate Farnsworth 36:08 I love the silence. That's okay. I have to ask. Yeah. So as I said, once the clinical trial is completed, then we will submit for FDA regulatory clearance of the insulin only configuration. Once the FDA application is filed, there will be an FDA review of the 510 k market applications, those typically take six months. And then we will have a launch date. Once that has all been completed. This
Stacey Simms 36:38 might be an odd question. But as we start to wrap it up here, when we go to conferences, like friends for life over the last several years, and Ed Damiano speaks about the the product and the process and everything. Anything that has to do with Beta Bionics and the iLet is so closely watched, it has just become, I guess the way to say this, you guys have a lot of fans out there in the community. I mean, it might be a small portion of the entire diabetes world. But this is a really passionate group of people kind of waiting for this. Do you as you talk to each other? Like, do you feel the pressure of that? Is that exciting to you? I just would imagine and I can't answer this for you. But going to work, there must be amazing every day to know that people are so excited about the product
Kate Farnsworth 37:25 is absolutely amazing. We definitely feel the community spirit and presence and pressure to deliver you know, every day, we talked about the fact that, you know, we want to help the people living with diabetes who have been waiting for us. And we don't want to make them wait any longer than they have to. And you know, the process has taken longer than we hoped it would. So we're definitely committed to the people with diabetes that we're trying to help. And we have the most passionate team working on this, everybody is so committed. And we have so many people who are touched by type 1 diabetes, either living with Type One Diabetes, or parents of children with Type One Diabetes, or children of parents with Type One Diabetes. You know, we're part of the community. We really feel passionately about this. So we cannot wait to have this device ready for those people.
Stacey Simms 38:27 Okay, thank you so much for joining me and for being patient with my questions. I know as I said, you're limited in what you can say. But I cannot tell you how much I appreciate Beta Bionics making you accessible and coming in to share this. So and thanks for all your hard work. I cannot wait to learn more. I know you can't wait to tell us more. So thanks so much for being here.
Kate Farnsworth 38:46 Thank you so much for having me. I'm really grateful for this opportunity. And I look forward to talking to you again in the future.
Unknown Speaker 38:58 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 39:04 More information at Diabetes connections.com. Or, of course in the show notes. You can always go to the homepage though, to get the full notes and the transcription of every episode. And there's a lot there. as Kate alluded to, there are some other studies, there's some more information, and it's all at Beta Bionics . So I will link that up in addition to the interviews we've done in the past with Ed Damiano, and I'm gonna link up the first interview I did with Kate back in 2015. Because looking back, that made me laugh and this has nothing to do with Beta Bionics or the pumper or technology or it's my technology. So I use very light technology. This is just a little bit of inside baseball now on the podcast when I travel and I'm going to be traveling again to conventions this year, which is so exciting. I have a small kind of a studio in your pocket. It's a zoom h5 recorder and I use a couple of ATR 2100s if you're into that kind of microphone technology. Light stuff. I don't even need to plug it into a computer. The h5 is its own little studio. But when I interviewed Kate and I interviewed a bunch of people at that first friend for life that I went to as a podcaster, I brought my Yeti. The Yeti microphone is a brick. It's not that great a microphone actually that don't get me started. But it's a brick. And it's so, so heavy. And I brought like a mini studio, I had this paneling setup. Oh my gosh, I had so many things to check when I got on the airplane. And then I was schlepping it around the hotel at friends for life, which is not the most compact hotel. It's a lot of walking. So I'll see if I can dig up some pictures. But Kate was very patient with me as was everybody I talked to that day. Just funny how things do change over six years. All right, we've got some Tell me something good coming up with some fantastic anniversaries, not about the podcast, some listeners who are celebrating very long time diversities and are doing great. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is how to help kids become more independent. You know, those transitional times are pretty tricky. elementary to middle middle to high school. You know what I mean? Using the Dexcom makes a big difference for us. It's not all about share and follow that's helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school or for a second grader to just show their care team their number before Jim at one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to keep your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week big time big diversities. Terry Lopes is celebrating 50 years of type 1 diabetes. She was diagnosed at the age of nine. And she made a really nice Facebook post where she talks about being grateful to the people in her life who helped her and looked out for her early on parents, siblings, friends, teachers, camp counselors, nurses, doctors, she says and thankful for those who still look out for me and for the technology that helps me have better control and live much more freely. And also makes it so that no one needs to be told they may only live to the age of 40 when diagnosed as a young child. Terry, thank you so much for sharing this. She also posted that her dad turned 90 recently as well. So Happy Birthday to him, my goodness. But it really is hard to imagine. And I know I'm so grateful to know many people who have lived with type one for 40,50, even 60,70 years. I mean, it's amazing that you know, I don't know them personally, but we've been connected online. And they were all told as children as children, that they would not live a long and healthy life. Our kids are not told that anymore. And I'm so grateful for that. Terry, I'm thrilled that you're in the group and thank you so much for sharing that. Yerachamil Altman shared a different kind of diaverary, he posted that he has been using an insulin pump for 40 years. 4-0! he has got to be one of the first people to use an insulin pump. And we've had him on the show. I know he helped design insulin pumps. I mean, my goodness, what a life. And he always posts we're so thankful for this the old technology. So if you're in the Facebook group, Diabetes Connections, the group I'll make sure to repost this. But I mean, the first insulin pump was basically like a syringe taped to what looks like a big pager, and it just stabbed you with the needle and gave you the Insulet I don't know it just it doesn't look like something that would work. It looks like something Benny would have slapped together from spear diabetes parts when he was in second grade. God bless the people who use this and tested everything and made it so like I just said so that our kids and adults diagnosed today can live long and healthy lives. 40 years with an insulin pump, you're off a meal. Thank you for sharing that. And you know, I love sharing the good news. If you've got something Tell me about it. Stacey at Diabetes connections.com or post in the Facebook group. I love to hear it. Before I let you go quick reminder about in the news, my new feature every Wednesday 4:30pm Eastern live on Facebook. I hope you can join me for that I'm working on some different texts. And to see if I can make it look a little bit more TV newsy. That's been really fun. I got a green screen and oh my gosh, I started out in television. And then I went to radio and then I went to podcasting. And now it's like back in TV reporting. It's bonkers. But I'm also as you know, if you're a regular podcast listener, and putting out those in the news episodes every Friday as well so if you miss it live, or you just want to hear the audio, I definitely want you to have options and like doing this a lot. It's been really fun. I'm trying to keep them short. So if you like it or you don't you've got any constructive criticism, any kind of criticism I can take but come on be nice. Please, please please let me know. I also announced on social media that I have taken a new position I am working with the fabulous folks at she podcasts. I'm Selling sponsorships for she podcasts live, which is coming up in October of this year. I'm going to do friends for life in New York in the beginning of October, and then I'm going to shoot podcasts live in the middle of October in Scottsdale, Arizona. It's going to be a busy month. I also have a big birthday in that month. So we're going to be we're looking forward to October, it's going to be great. But if you are at all involved in podcasting, and you're a woman, please check out she podcasts, I'll put a link if you are interested in reaching 1000s of women who podcast You don't have to be a technology company. But if you want to reach women who are movers and shakers, let me know because I can hook you up. That's my new gig. I'm still gonna be doing the podcast of course, and all my other projects. This is perfect because I get to meet some new people and do some fun stuff. But I don't have to give up anything but maybe some sleep. I don't know. I'm gonna get this done. Alright, thank you, as always to my editor John Bukeas from audio editing solutions. Thank you so much for listening six years. Oh my gosh. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.
Benny 46:10 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai | |||
| 04 Oct 2022 | "What We Wish You Knew - and Why" - A diabetes patient-centered panel from #EASD | 00:44:47 | |
Many of you tuned in virtually to EASD or maybe you were lucky enough to travel there! There was one talk at the European Association for the Study of Diabetes that really got my attention: the #dedoc° symposia “What we wish you knew — and why” which featured advocates speaking on topics that are relevant to people living with diabetes. The topic for this one is: Novel forms of online peer support developed during COVID; how did communities around the world stay connected? #dedoc° was founded in 2012 by Bastian Hauck, who created the Twitter hashtag #dedoc to host weekly TweetChats for the German chapter of the Diabetes Online Community. It acted as a catalyst to grow a small group of diabetes bloggers into one of Europe’s strongest patient advocacy and peer support communities. This is an excerpt from the symposium – you can watch the entire thing including the Q&A at the end – at www.dedoc.org/symposium. Speakers: Renza Scibilia, Diabetes Australia Andrea Limbourg, France Jeff Hitchcock, Children with Diabetes, USA Salih Hendricks, South Africa Tom Dean, UK, Twitter DiabetesChat Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *Click here to learn more about OMNIPOD**Click here to learn more about AFREZZA**Click here to learn more about DEXCOM* | |||
| 12 Apr 2024 | In the News... Dexcom-to-watch update, Wegovy studies, night time hypo research and more! | 00:09:11 | |
It’s In the News! A look at the top diabetes stories and headlines happening now. Top stories this week: Dexcom launches direct-to-watch with the G7 in the UK and Ireland, more studies looking at heart benefits with Wegovy and diabetes, a new T1D study investigating an injectable to prevent overnight hypoglycemia, lobbying for Levimir, a ChatGPT diabetes diagnosis and more! Find out more about Moms' Night Out Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Learn more about everything at our home page www.diabetes-connections.com Reach out with questions or comments: info@diabetes-connections.com | |||
| 24 Nov 2020 | "He's Why I Have My Vision" - Alecia & Marty Have a Friendship Forged in Diabetes History | 00:47:10 | |
Clinical trials are incredibly important for research, but the people who take part don't usually get to meet anyone they've helped. Marty & Alecia are a very special exception! Join the Diabetes Connections Facebook Group! Check out Stacey's new book: The World's Worst Diabetes Mom! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:22 This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27 This week, taking part in a clinical trial is incredibly important, but it's often thankless you don't expect to meet the people you might help years later. That's why it was remarkable when Alecia met Marty,
Alecia Wesner 0:40 the people who tested that technology, I'll never meet them and tell them but you know, you're some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn't or they lost their life
Marty Drilling 0:56 while she was moved because I was still alive and she'd been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated.
Stacey Simms 1:06 Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues. In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. If you're listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It's also a really great Thanksgiving story, because it's just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story. So I'm really glad you're here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action. Quick reminder, my book, the world's worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you're buying it for. You know, make sure if you're getting it for your mom, or your wife, that you let them know that you don't think they're the worst that It's me who's the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There's also a tiny little shop button at the very top, but the promo code is “November.” And that'll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can't sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook, okay to Marty and Alecia in just a moment. But first diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime instantly share blood glucose reports with your health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip subscription plans pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. My guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said. “Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.” I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don't know about you, I'm really squeamish. Even though I've had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn't scare you. Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much.
Marty Drilling 5:54 You're more than welcome.
Alecia Wesner 5:55 Thank you for having us.
Stacey Simms 5:56 I admit, I don't know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we'll get to that we'll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don't mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed?
Alecia Wesner 6:20 I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I'm very active with JDRF. I'm a JDRF rider. And I've written many, many miles on a bike.
Stacey Simms 6:44 And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What's your story?
Marty Drilling 6:49 Well, I was four and a half when I was diagnosed in 1953. So I've been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you've got you're going to go blind if you don't do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too. And then Alecia, pick up the story from there because it was pretty amazing.
Alecia Wesner 8:03 Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we're like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty's destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn't asked Marty was more of his diabetes story. So we were at Elizabeth Warren's office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I'm sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that's why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying. I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I'd seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn't really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I'll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I've always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there's no more important moment to me than this moment. So yeah, so that is how we are friends. So I'm sorry, Marty. Your version of this story,
Stacey Simms 10:55 I'm upset with both of you now. Because I think I have cried twice on this podcast in five years. And you've, you've just done it again. And it takes a lot. But I think because and I'm not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I've worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I'm with you, Alecia, I think all the time about the people that have done so much to make my son's life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let's swing over to you. And don't brush it off. I know you're gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction,
Marty Drilling 11:47 as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I'm still I was still alive. And she'd been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated.
Stacey Simms 12:34 So if you don't mind, let me ask some details. And I always say look, if this gets too personal, you know, we'll move on. But I'm very curious if you don't mind, Alecia, what happens? So when you're treated like this? Does it go away after a while and you're fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through?
Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap, you push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do.
Alecia Wesner 13:51 Yeah, absolutely. Well, I know that my situation is could be different than somebody else's. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I'm certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty's of the world specifically Marty and also really, really great doctors. My vision is fine now I'm 47 years old. So I wear glasses because I'm old not because I because of anything diabetes related. I will say so so you're both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that's what he says, Every time I see him, that's a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it's lasers treating my eyes. It's always been interesting to me. So I asked a lot of questions at the doctor's office, and I, I get a copy of all of my scans, because I'd like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it's definitely distorted. But my eyes compensate for that together.
Stacey Simms 15:43 Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then?
Marty Drilling 16:05 Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn't have a snack in the afternoon. But if I don't give it to him, he's going to pass out. And my mother often says that one of the once you would call the doctor's office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it's appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I'd have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don't forget, we didn't have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar's were higher than but I could do a lot more exercise then because my blood sugar's didn't plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn't doing well and what helped me out, but it's
Stacey Simms 18:23 interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren't living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing.
Marty Drilling 18:41 It's not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something.
Stacey Simms 19:01 So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like? Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don't want to hear any details of any eye surgery. I'm sorry, but to have to skip ahead about eight minutes when we switch to talking about Alecia's experience with artificial pancreas trials. But truly, two and a half to three minutes will take you through what I would consider the most sensitive stuff that's happening in this interview. The rest of it just makes reference to eye surgery and some procedures without anything that I would consider really sensitive. Okay, fair warning back to Marty.
Marty Drilling 19:50 Sure. first trial was in my left eye, and I think I told him we should this story but but when I went in there, it's like a Frankenstein movie because it was a very sparse room. It was just the Doctor coverall and his secretary and they put you either lie down on this metal table. And then he'd approach with the head to anesthetize my eye. And this is very primitive, as you can well imagine. And so he was approached with a needle that I thought was about 10 feet one to, you know, stabilized and anesthetize the eye so it wouldn't move. And then back then they had a huge light to make sure he could see where it was going. And he told me, we had the same brightness, as the lights, they used to light up the ocean when the astronauts were landing it at night, and then they just started zapping away. And that had to do that for three days in a row. And he said, You have to be very careful, you don't want to jostle your I, like put books under the top, where my head was under the bed, make sure my head wall was stayed above my heart. So after three days with the left guy, they, I would call back and see them, I think I was going back like every three months or so, it was a long time ago. And I don't always remember all the details. I had laser surgeries, I don't know how I lost track of the number of times I got zapped in both eyes. As the years went on, the improvements in the treatment went on. And so by the time the West laser treatment had, I had a I just had to put my eye up to the machine, resting my chin on the little bar there. And they could zap it right from there as opposed to having to any or they just would put drops in the eyes. So in terms of pain, it was much less painful and much less cumbersome.
Stacey Simms 21:49 Do you remember about when the last treatment was? I mean, are we talking a year later? 10 years later? I'm just trying to get a sense of that.
Marty Drilling 21:55 Yeah, it was well into the 80s. Because Don't forget I had, they had to make sure it worked in the left guy. And then I needed in my right eye as well. So yeah, I was, I see ABS would have been, I'm sure it was a waste into the 80s could have been in early 90s. And then I but I haven't had treatment for a while. I've had a couple of vitrectomy surgery because my vitreous was wrinkled in one eye. And but similar to what uh, we should just saw the last time I've been in with a number of years I've been in to see the doctor, they're very happy that it's stable. They have some issues with my right eye, which is my good eye. But they said it's stable, so we can just keep doing what you're doing. That's great. So how do you is?
Stacey Simms 22:42 I bet so how do you if you don't mind? Again, this is a little personal. But how is your day to day vision? I mean, we're all wearing reading glasses, as we just said, you know, that kind of stuff? You know? All right, exactly. No doubt. But how is that for you, Marty?
Marty Drilling 22:58 While my vision I can see, which is 90% of the battle. I try not to drive at night, because I have low vision impact. And the it's very difficult to see street read street signs and the lightbulbs get become stars as opposed to circular. So but other than that, I don't have any restrictions and reading once in a while I'll get a floaty but it has not impacted my quality of life to any significant degree. And since I enjoy walking, I don't mind walking around in to various restaurants or whatever that are nearby. Alecia, let
Stacey Simms 23:42 me ask you, people, including me, are a little squeamish. And I've had eye surgery and I've had eye issues. You know, I don't have diabetes, but I've had other issues. And it is one of the things that I think makes many of us very nervous to the point that I would be concerned that some people with diabetes or any condition would be scared enough not to want to seek treatment. Can you talk a little bit? I mean, look, you've already mentioned you've got like eyeball pictures in your office. So I'm not sure you're the best person to ask. Can you perhaps ease some fears about getting treatment for retinopathy?
Alecia Wesner 24:16 Well, I do think one thing that I should have made clear earlier, is that treatments have really changed since certainly since Marty had laser treatments and that I have had laser treatments. I mean, you know it from the diabetes perspective. Although lasers still one of the treatments, there are more options than there used to be. And I know for me, I think I'm pretty selective about my doctors. I've taken years to build up, like my dream team. I really like my doctor, I admire him, he saved my vision. So I think that helps a little bit to but also I think that you know these appointments, it's not like you're there for a month. It's one appointment, you do it once a year and then if you have a problem, you know Make your decisions on how you want to be treated. But the actual laser part of it, the types of things that I was having done, it's more the waiting, that is the harder part than the actual treatment, you know, you're, you have to keep your head still and your eyes being held open. And I guess for somebody who's like squeamish about their eyes, that might sound kind of freaky. But I would think you'd rather have your eye held open, then you'd be trying to do it yourself. So you know, it's just a matter of staying to bill. And I don't know if I will ever be good at meditating. But I think the focusing on other aspects of life for something like that, I mean, it's no different than any other part of diabetes care, you know, some of it flat out sucks, but you know, that these are the steps that you take for, for your life to go on. And certainly for me with my eyes, you know, I'm looking at a picture of my office right now with my eye and, and it looks like all little dots all over the inside of my eye, and that is scar tissue from where they cauterize the vessels. And that is not what a normal eye looks like. And that is the inside of my eye. But when I look at that, I didn't feel anything during that, like it, there's no physical pain, it's just the discomfort of things still, and a bright light being in your eye for a little bit of time. So I think in like the scheme of, of like, physical pain of things that you're treated for, certainly, as somebody who's broken quite a few bones, like a broken bone is 1000 times worse than having your eyes treated. But I think the stress of the anticipation of having a problem is really the hardest part.
Marty Drilling 26:38 If anybody is concerned today about getting treatment for their eyes, the progress that has been made makes it a totally different experience from what we experienced and what I experienced. And they don't even use laser treatments as their primary choice for treatment of anybody with the retinopathy. So they shouldn't be squeamish. It sure beats the alternative of not being able to see
Stacey Simms 27:05 Alecia, I've got to ask you, because you know, you've been through these clinical trials, and my son uses control IQ. I'm curious, what led you to that? And when did you jump in? Was it back with type zero years ago?
Alecia Wesner 27:17 Yeah. Well, this is this is a crazy story. So I live in New York City. And I was at a JDRF board meeting, and Todd Brobson spoke, and he had been in a lot of the very early closed loop clinical trials at UVA. And at the end of his speaking, I asked to take a picture with him and hug him. And I don't know that he was totally comfortable with that. But I'm aggressive. But I felt so passionate about what he was doing. And that, how could I do something like that? And then, you know, you worry, because you've had diabetes for so long that you won't qualify, you know, like, Am I almost like too broken to participate in these things. So I got on the list at UVA, along with a very good friend of mine. And over about a year and a half, there were a couple times where they were going to bring us in and you know, we got our physicals and all of those things. And then we both got an email saying, We've good news and bad news. The good news is the trial we were going to use you for has made enough progress, that we don't need you anymore, which you know, if you think you're going to be in a trial, that's a real bummer. Especially because you're trying to coordinate how you're going to get to UVA and like take time off work and all this other stuff. But the good news was that the next phase of trials now is going to go out to other research institutions. And one of them was Mount Sinai in New York, I got this email as I was sitting for my regular three month checkup with my endocrinologist and Dr. Cara levy. And she was the doctor who was going to be overseeing the trial. She walked into the room, I said, you're never going to believe this. And she said, I already know your file as somebody who maybe could be in this trial. So that's how it all started for me. But I think for me, at a certain point in my life, my life view is that this life is really a gift, and that I am lucky to be here, and that I have lived on borrowed time since I was six years old. So I think I had gotten to a point where you know, I can do fundraising, I can do walks and I can do rides and everything else. But what is the next level for me of how you know, my life, and this body can make an impact and I thought being in a clinical trial so you know, some of the trials have been much more challenging than others. One of them was actually up at Joslin and I wish I had known Marty then because I then walked around Joslin, after everything and there they had done a lot of eye scans, and they have the original equipment for treating eye treatments in the lobby at Joslin and to me that hit me hard because you know your life is like Not a straight line and not a normal path that you plan. But that was a real moment. This friendship that I have with Marty is, you know, we were laughing about the fact that it's been a year. But Marty and I talk all the time. And it's such a crybaby mess. And I've only had like two cups of coffee, like usually this is like a drink.
Stacey Simms 30:28 But we understand why,
Alecia Wesner 30:30 you know, I just, I just feel really lucky. And, and I am glad for that. And it is just, it is such a pleasure to know somebody who has, you know, it's like Marty, I, there were no blood meters when I was a kid, it was testing your urine. And the technology has changed so much. I mean, carb counting didn't exist. But I I look at that. And it's, it's such a special thing to have this bond with somebody else. And that they they really did have an impact on your life.
Stacey Simms 31:01 Marty, have you been back to Jocelyn? Have you seen that in the lobby?
Marty Drilling 31:05 Oh, yeah, absolutely. stone in the base of my unit. It's prominently displayed there in the lobby, the corner of the waiting room. I have seen it then that like a we should meet makes a big difference. Joslin does a great job of maintaining the history of the development so that we can all appreciate this how far we've come, we're not, we don't have a cure. But most diseases, you never get a cure. But certainly with the improvements made with them, the pump and carb counting, we have a lot of instant information to help you make a best decision you can based on what the facts are at the time, knowing full well that what may work five days in a row, which isn't going to work six days, six, seven or eight. But but that's just the reality of the situation. And was it wasn't cool, we should he's right is I think we have a unique bond just because we have so many shared experiences, and have the same approaches is take advantage of each day and your torture.
Stacey Simms 32:10 Before I let you go. I'm curious. Marty, one more question about you know, your story here. They told you it sounds like one of the reasons you did the clinical trial in the first place was because they said, you know, it's 1974 you're probably going to go blind if you don't do this. And I'm curious, you know, looking back at that, what's that, like to hear those words, I talked to a lot of people who are diagnosed, you know, before, I mean, I'll just put down 2000 as a casual marker, I'm kind of making that up. But I know people who were diagnosed in the 1990s, who were told they wouldn't live to be 30 years old. You know, it's got to be devastating to hear that. And I don't know how somebody hears that and says, forget you, I'm gonna fight I'm gonna do what I need to do to make it. I'm just curious, you know, when you hear words like that, how do you keep going?
Marty Drilling 32:54 From my point of view, I said, I'm going to make the most of each day if that's what's going to happen, you certainly don't have an alternative because there's only a Joslin said, if you will have a comply with the rules and you know, live a good life in terms of diabetes care, you can survive, and if you don't, you're gonna die a quick and very painful death. So that was the impression. But no, you're talking about those that were diagnosed in the 90s. Back in, in the 50s. My mother, I was four and a half. And my parents were told, he's not going to make it to its 11th birthday. So I go leash everyday is against, I just figured I'm going to get the most out of life while I have it in this 70s. every October, the New York Times would run a full page article. And now all the deleterious side effects of diabetes long term complications. So I figured if I survive to the age of 40, I'm going to not have any legs or be blind. So that certainly impacted I'm sure on some of the nights when I decided I was going off this strict regimen. But all in all, I just said, I sort of figured if I can defy science, and that's alright in my own book. And so I just kept wanting to prove people wrong, but it didn't it impacts how you think about life. Certainly, I didn't do some things like I never took up skiing for an example. And we should can because I was told by ice wood, all the jolting and going down the ski slope would cause the my eyes to hemorrhage. So there are sacrifices you make, but I just never let it stop me from getting out of bed in the morning and doing something positive.
Stacey Simms 34:50 And now Alecia, I'll ask you to you know, it is remarkable to meet someone like Marty, who as you said for years you wanted to thank the people that had done these clinical trials, what is it like now knowing that you are that person? for other people, there is somebody who is into the 21, who is thanking you, who may never meet you for doing these clinical trials and everything you have done.
Alecia Wesner 35:14 Yeah, that part's a little weird. So because Marty actually asked me this one time, about how I see him, that other people will see me like that. And I really poopoo the whole thing. But there is a sense of responsibilities. Like when you're in these trials, you're following a lot of rules. And I think the reason that I kept kind of working my way up the chain of clinical trials, as far as AP step one was because at the beginning, they want to make sure you're, you know, you're on a tight schedule, and you're writing everything down. And you know, it's a huge time commitment. So I think I've taken the responsibility of being in trials very seriously because I, I want these technologies to work. But I think for me, you know, I, and Stacy, you're a mom to somebody with Type One Diabetes, I think that a lot of credit goes to my parents, my parents, when I was diagnosed, the doctor said, She's a child first and a diabetic second. And that really, they took that to heart. And I played sports, I didn't want to play like sports, I hated. My parents made me play, because I was going to show the world that I could do this, but also because I was supposed to be getting exercise. And like I went to sleep overs as kids. I did not like in my class, because my mom thought if this person will you know, when I was diagnosed, the concern in the neighborhood was that I was contagious. Right? Right. It must have been Oh, yeah. And, you know, all of a sudden, like, I went from having friends too. And, you know, this is long before the internet and sold. But, you know, somebody invited me to sleep over and I thought this girl was a bully. And my mom said, You're going there. And I was like, Please don't make me go, please. Go and, and, you know, and I ended up going to sleep over because her mom really wanted to put it out there. But it was okay to have me sleep over. And I looked back at, you know, my parents pushed me so much. And I guess there's like a negative to that too. But I think in the end, like, you know, I went to college, and I knew somebody else with type one who went to a local school because their parents didn't want her. They thought it was too much of a risk to move away. And Stacey, as you pointed out, we both went to Syracuse. And Syracuse was, you know, a whole different world than what I had come from. But I think those things, and I do think that's part of the bond that I have with Marty beyond like I was to have these clinical trials, we don't have diabetes and stuff like that. It's that I think we both have a very similar approach to life, which is go out there and do it. You know, and that doesn't just relate to diabetes. That's life.
Stacey Simms 37:45 I love it. Well, it has just been remarkable to listen to both of you. I hope I've done your stories justice here. I'm still kind of teary and I'm not happy about that.
Alecia Wesner 37:59 Marty just had his wedding anniversary this summer. And I spent the day with him.
Stacey Simms 38:05 Oh, Marty, how long have you been married? Tell us about tell us what your wife.
Marty Drilling 38:08 My wife is a saint. We've been married 47 years, have two kids and five beautiful grandchildren. And I tell people all the time that without her I don't think I'd still be here because she has accepted the burden of living with a type one diabetic and does what she knows has to be done. Even if I'm having my low when I get nasty. She put tolerate it and then I pay for it later. But I get out of that immediate situation. And so yes, Maureen has been a godsend to that. She after we got married, she actually went to nursing school, too, because that would give her more flexibility in working with the kids. But it also has been a huge benefit for my day to day existence in our day to day life together.
Unknown Speaker 38:58 Marty.
Stacey Simms 38:58 Alecia, thank you so much for joining me for sharing your stories. And I really hope you come back. Let's check in again, maybe you know next year and see what everybody's doing. But thank you so much for joining me.
Marty Drilling 39:09 Well, thanks for the invite and great, great talking to you and Alecia.
Unknown Speaker 39:15 Thank you.
Unknown Speaker 39:21 You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 39:27 Lots more information on what you need to know about taking care of your eyes. We will link up more information about some of these clinical trials. I just found this story to be fascinating. You can go to Diabetes connections.com click on the episode homepage as always for the links in the info and the transcript. I so enjoyed this interview. I think you could probably tell as I said, I don't get too emotional about this stuff anymore. But every once in a while it sneaks up on you and boy, I mean you can't even hear it really during the interview. I cried so much more. It's a complete mess and it was one of the things Few days, I forgot what I was doing that day. But I'd actually put on makeup. I had something else where I had to be on camera, and I was a complete mess. If I haven't cried off my mascara in a very long time, thanks to all this working from home. Hopefully we'll follow up with Marty and Alecia, I really think they'd be fun to check back in with. Okay, up next we're going to talk innovations, a new team is announced for the United States pump market. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you know, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it now about once a week. I probably check it a little bit less than that these days. But it really helps Benny and me dial back and see longer term trends and help us you know, not overcorrect to what just happened for one day or even one hour. The overlay reports help the context of these glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo. As I am taping this episode, it has just been announced. And I mean like an hour ago that Eli Lilly and Yep, so med have entered into an agreement to quote advance an automated insulin delivery system, they are getting into the hybrid closed loop market. There is going to be a lot more information forthcoming. I have already contacted these folks to see if they'll come on. I definitely want to talk to Lily I really want to talk to Yep, so mid I hope I'm saying that right. This is a European pump company that has been out bro, I'd say since the mid 2000s, probably since 2016. I know a couple people who use it who are very happy with it. It hasn't come to the United States yet, but really plans to bring it here, they will probably submit in 2022. If all goes well, so who knows if it'll be early or later when that will actually come out. But here's what's interesting to me. And again, we're getting a lot more details in podcasting is not the best way to get breaking news. So I will be putting more out on social media. But here's my very quick take about two two and a half years ago in May of 2018. A bunch of bloggers and I guess influencers were invited to Lilly's headquarters in Cambridge in Massachusetts, as Lily had this connected diabetes solutions system that they started talking about, and apparently or supposedly wanted blogger input. So we all went and we were shown an early prototype of what was supposed to become Lilly's pump. And I assume now that they are not going to use what we saw, which was a little disc it was a little bit smaller than I think at the time, people compared it to like a little round box of shoe polish or tobacco chew, you know, that kind of stuff. It was about the size of a small coaster, it was less than an inch high, it was very sleek and tiny. It was connected to the body by a little tube. So you could make the tube longer or you make the tube shorter. The idea was that you were close to the body, kind of like what we've seen of the upcoming and expected tandem tee sport where it has a tube but it is supposed to be placed very close or on the body like an omni pod. And you could hear us talk about Lily's connected diabetes solution as they call it in a past episode, I will link that up. It also features pens, and it is at least at the time we were shown it would be using the dexcom CGM. I don't see an announcement of that. I don't see a CGM announced with this. But of course, they'll have to be one, the assumption would be that it is Dexcom since Lilly has an agreement with them. But what's troubling and I guess that's a strong word to use, but I'll use it. what's troubling about this is that this pump will use prefilled insulin cartridges for Lilly's rapid acting insulins. So it is a proprietary insulin system. I don't think there's any other pump on the market that only uses one kind or one brand of insulin. And my guess is they will make sure that by making the cartridges, a special shape or some kind of patent so that if you want to use a novo insulin in it, you can't. I don't know for sure. We haven't seen that the DIY community is fabulous at this and if it can be done, I know they will get it done. But I find that troubling when we voiced that in 2018, we asked about using only Lilly's insulin in their pump and how troubling that would be. And at the time reading between the lines, my takeaway was Lilly feels the insulin makers all feel that the Ryan's gonna be over soon, states are getting into the action, they're cracking down on price. There are going to be reforms whether they're on the federal level or not, and they're not gonna be able to charge what they have been for insolent and they need to find a way to continue to make the outrageous sums of money that they are making. I know it's not very nice of me to say but you And how I feel about this. So I think proprietary pumps are one way that they may try to do that. I of course will give Lilly a chance to respond, as I said have already reached out to them and to give some meds so hopefully they will come on the show and tell us more competition in the pump market is a great thing, but not if that's at the expense of competition, little as it is in the insulin market. We’re in the homestretch of 2020 and like a lot of you this year cannot end soon enough for me However, there's still some good stuff to come we will look at the bright side as much as we can and friends for life is coming up. They are doing a wonderful virtual winter conference. I will link some information in the show notes as well. We are doing our game show Wait, wait, don't poke me which is one of my favorites. And we had a great time doing this. I love writing all the nonsense that goes into the show. If you haven't listened to it or seen it in the past is a take off of NPRs Wait, wait, don't tell me. If you haven't heard that show. I highly recommend you listen to it. It's just a fun trivia news and nonsense. There's limericks. It's really a fun game show. Doing these game shows without an audience is very difficult. My panelists were ready in game and up for anything and they did a great job. I might have to put a left track in as I edit it, we shall see. But I hope if you're going to friends for life, virtually that you stop by watch the game show and take part we have some fun interaction. Last time we did this over the summer I created a bingo game where you could play along from home. I think we'll do that again. And then we are just looking forward to 2021 I have lots of fun stuff in store for the podcast as usual. I always want to hear from you. Let me know what you think what you like to hear what you don't like to hear. I take it all to heart and do the best that we can. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Benny 46:55 | |||
