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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: 2021
Aug 3, 2021

Anticipation just keeps growing for the new Omnipod system, still waiting for FDA approval. This week, we talk to Dr. Trang Ly, Senior Vice President & Medical Director at Insulet Corporation. We’ll get an in-depth run through of the features of Omnipod 5 with Horizon, what makes it different from the other hybrid closed loops already on the market, and many other questions you all had.

Our previous interview with Insulet CEO Shacey Petrovic 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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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  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

This week anticipation growing for the new Omnipod 5 system still waiting for FDA approval. Many of the people behind it have waited a long time to knowing the promise of closed loop systems for people with diabetes and their families.

 

Dr. Trang Ly  0:42

I still remember the very first time the very first patient that I put the system on and, and I was watching that insulin being delivered. And I remember just like hugging the participants, Mom, because we just both knew how incredible this was going to be if, if this could reach masses of people.

 

Stacey Simms  1:04

That's Dr. Trang Ly, Senior Vice President and medical director at insulin Corporation, we'll get an in depth run through of the features of Omnipod 5 with horizon. What makes it different from the other hybrid closed loops already on the market and many other questions you all sent in.

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 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. As you listen to this particular episode couple of things to keep in mind, Omnipod 5 with Horizon the full name of the system we are talking about today is not out yet it is not commercially available as of this taping. This episode is live on August 3 2021. The FDA is still mulling it over. If you are looking for even more information and some of the history of this, it may be worth going back to our first episode about this system that was almost exactly two years ago with the company CEO Shacey Petrovic. And I will link that interview up in the show notes at Diabetes connections.com

COVID, really through this submission for a loop with the delays. And I didn't mean upon there with the word loop. But I know there has been frustration in the community. And there's frustration with an Insulet as well. But it really is close. Now, if you are not familiar and I know we have a lot of new listeners who've joined the show more recently. I know some of you have been hearing about this for years. But bear with me for just a moment as I explain it very quickly. You've got your Omnipod pod. That's the thing that holds and infuses the insulin, it's an all in one. It sits on the body, there's no buttons, there's no display, there's nothing to read, you've got your separate handheld controller, the thing with the display on it and the buttons are the touchscreen of how you actually control the pod when it comes to giving insulin for meals or for correction doses, that sort of thing. And for Omnipod five with horizon, you also have the Dexcom G6, the continuous glucose monitor, the pod and the CGM work together to give less or give more insulin to try to keep you in range. Now that is very, very simple. But Dr. Ly will explain it in much better detail. And I will also link up more information as always in the show notes. If you haven't ever seen what this looks like if you're curious, we'll link you up to all of the information.

Dr. Trang Ly, my guest is the Senior Vice President and medical director at Insulet. Corporation, she leads their Omnipod five automated insulin delivery system clinical program before her time at Insulet. Dr. Ly was a pediatric endocrinologist in Australia. And toward the end of the interview, we talk about how personally knowing families that will benefit from this system and systems like it, you know what that is like for her.

So my interview with Dr. Ly in just a moment, but first Diabetes Connections is brought to you buy Daario health and over the years, I finally managed 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 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, Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.

Dr. Ly, thank you so much for spending some time with me. My listeners are very excited to get all the information that they can about this. So thanks for being with me today.

 

Dr. Trang Ly  4:58

Yeah, great to be program. Thanks, Stacey

 

Stacey Simms  5:01

you got it. Let's start with an overview. I know that most people listening are probably very familiar with what we think Omnipod 5 with horizon will be. But can you start by just giving us an update and taking us through what is in front of the FDA for approval as you and I are speaking today?

 

Dr. Trang Ly  5:17

Yeah, so happy to do so the Omnipod five system that you're referring to is Omnipod, or Insulet, first automated insulin delivery system. So this system, he has previously known as horizon or the Omnipod, five algorithm on the pod itself. And it talks directly with the ICGM, which is the Dexcom G6 sensor, and also has a separate controller device as well to be able to remotely deliver boluses and stop and start automated mode, the system that some kind of FDA just requires you to wear a pod and a CGM to stay in automated delivery, because the algorithm is on the pod itself. And I think that is the key feature of the Omnipod five system,

 

Stacey Simms  6:14

a lot to break down there. And we'll get to each of the components. But let's start there with the kind of the brains of the operation being on the pod. What does that mean, in a practical sense when someone is wearing the system that they don't have to worry about it stopping that sort of thing?

 

Dr. Trang Ly  6:27

Yeah. So the The key difference between previous products is that with our current Omnipod dash and earlier versions of Omnipod, the pod delivers the basil programs and the bolus delivery that the user has initiated. And so insulin is not under automated delivery. But in our future system with Omnipod. Five watch the pod does is that takes the CGM value which you wear on body and so that value directly communicate with the pod itself. And then the system and the algorithm on the pod takes that CGM value and determines how much insulin you need every five minutes. If you're running high, and you need a little bit more influence, the pod will automatically increase insulin delivery. And if you're at your target or dropping low, it will augment insulin delivery, so it might suspend or it might reduce the insulin that you need. That is the key difference between the product that is available today. And the future with Omnipod. Five,

 

Stacey Simms  7:38

you would still use the PDM or the phone and we'll get to that to give yourself a meal bolus or a correction bolus.

 

Dr. Trang Ly  7:47

That's right. For those instances where you're about to have a meal. Or if you're running high for whatever reason, like you underestimated carbs earlier, and you want to give a manual bolus, you can do that any time. And you would do that by using the controller device or PDM, to enter in your carbs, and use our bolus calculator to deliver that insulin. So all of those features are very similar to the current production on the pod dash, which again, is very similar to our earlier version. So that's on the pod.

 

Stacey Simms  8:24

Let's talk about the algorithm a little bit. I know there's a lot that's proprietary here. But I'm curious, we've seen over the last couple of years, Medtronic come out with a you know, an automated device. Tandem has control IQ, I believe my listeners are pretty familiar with the workings of those, what would be the biggest differences between how those systems work and how Omnipod 5 with horizon will work.

 

Dr. Trang Ly  8:49

I'm very familiar with those algorithms. Because I, you know, in my previous life, I worked very quickly with those systems as they were being developed. And so I say, you know, having been in this role for the last five years and been running the clinical trials. For them, I can tell you that the main difference I'd say would be that our algorithm, you can set the target glucose for whatever time of day. And the range we have is between 110 to 150, in 10 milligram per deciliter increments. And you might have a family where you want to go overnight, you want to run out and 20 because you feel more comfortable at 120 overnight, and then but during the day you want to run at 110 you can set up a profile so that the algorithm augments insulin delivery to your preferred target glucose level. And, you know, we we knew when we were coming to market that we were not going we certainly weren't the first and not the second product market. So we knew that we had to deliver a level of personalization for our users. So we really listened to what people wanted. And people do want that level of personalization and customization. And so we implemented that design feature into our clinical trial to demonstrate that our system performs very safely across those different target glucose level. Until our clinical studies which show we'll get into Dude, what was tested across a very wide range of patients, for initially, we did a beam study, which was for patients aged six to 70 years of age. And then most recently, just a couple weeks ago, we were reported on our preschool age participants who were between two to six years of age, and they see I'm sure you'll appreciate that they're young. glucose control is just very variable, very unpredictable. And, you know, I think strength of our algorithm is that it works very well, even if you, you know, Miss or skip a bolus, occasionally, you know, that algorithm is going to kick in, it's going to deliver, you know, a decent amount of insulin to get you back in range, it's going to happen immediately, but it's calling to do its best to keep you in the range as much as possible. And similar, I'd say to the other systems, especially, I'd say more second generation systems is that we are getting, you know, excellent timing range, especially in the overnight period.

 

Stacey Simms  11:32

It was I laughed a little when you said preschool, as you know, My son was diagnosed before he was two. And whenever I see studies with little kids that work so well, it's so exciting, because you know, that age group, they can't even tell you when they're feeling weird. They can't stomach my son couldn't even pronounce the word diabetes. So it's a different age group altogether. So I was thrilled to see those results.

 

Dr. Trang Ly  11:53

I know, well, I have two kids under five right now, and they don't have diabetes. And I have no idea how much they're going to ace or whether or not you know how much activity they're going to do. And I just can't even fathom how challenging it would be to have a child with diabetes. And are they low? Or are they or as I just grumpy? asleep,

 

Stacey Simms  12:18

I didn't have enough. Oh, my goodness, I should have said this towards the beginning. And I know, I know Dr. Like that, you know, this, we use control IQ. We're very happy with the Tandem, but we're not rooting for any system here. I think that the and I say we I mean me, I it's so exciting to see all of these systems beginning to come to market beginning to really have an impact to have differences in their algorithms so that people can pick and choose exactly what they want. And we're just at the beginning of it. So I am so excited to see the study's going so well, I have a couple of questions about what you've already mentioned, on that target of 110 to 150, just to be crystal clear about it, you're talking about not just putting the pump into say using Tandem, for example, exercise mode or sleep mode, you're seeing in you know, my weekday profile, for example, I know my son plays basketball every day from three to seven so we're going to create a profile that changes his blood glucose target for that period of time, perhaps starting you know, before he plays a little bit and then extending after and that's an actual profile in the pump that you then could change. Okay, perfect. All right, that's really interesting. Is there an Is there a and I hate to use Tandem is word sorry, is there an exercise mode or a sleep mode? Or is it just the user sets it as they want?

 

Right back to Dr. Ly answering that question. But first Diabetes Connections is brought to you by tchibo hypo pin 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 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 Jeeva hypo pen, it's the first auto injector to treat very low blood sugar chivo Kibo pen is premixed and are ready to go with no visible needle before Jeeva 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 G book logo g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk. Now back to Dr. Ly. Going into more detail about how the Omnipod 5with horizon system works.

 

Dr. Trang Ly  14:36

Separate but yes, what you describe is exactly how our product works or during the day. It might be that you want your son to run out 110 through the day but maybe between the hours of three and seven you'd run at 140 that is an option. And you can set that up pre programmed so that he doesn't have to remember to do that every day or you can run in what we call a hyper protect mode, which is work similarly to like attempt days or that you you'll be familiar with. So that's more of an ad hoc, oh, I feel like exercising for the next two hours, I'm going to set my program in hyper protect mode. And hyper protect, what the system does is it adjusts your target glucose to 150. And it actually gives you less insulin than your basal insulin. So you're running essentially with less insulin on board than you would normally would during that period. And so we we did a lot of studies to kind of land on that design. And we feel that he does a good job of preventing hyperglycemia for, for people without problems asked afterwards. So it has worked well, because it doesn't, you know, sometimes, when you're preparing for exercise, you might take a snack, and that drives your blood glucose up. And then if you have a really robust algorithm that might kick in and give you a fair amount of insulin. So that's what we were trying to avoid with our design was that not just that the setpoint is elevated, but also that the system can't give too much insulin during that time. So that's sort of our equivalent exercise mode. We don't have anything called sleep mode. But as I said, our set point of 110, you know, once were created will be the lowest available in the United States.

 

Stacey Simms  16:30

One of the things I've learned recently, and I I feel like I haven't seen this reported very widely, is that, unlike Tandem control IQ, the Omnipod system, the Omnipod, five with horizon, learns the user it changes, it has a little bit of I guess I call it artificial intelligence. Is that correct? And can you walk me through what I'm saying? What I mean by that? Yeah.

 

Dr. Trang Ly  16:56

Yes, yeah, I think I think you're I'm getting to a really key difference between our, our system and others. So with, with our system, when we, when we were developing it, we wanted to reduce the work that comes with diabetes, as well. And so you know, a lot of the work that comes with that is adjusting those or rate adjusting, you know, all the settings and things like that. And so our system, initially, when you, when you have it out of the box, it does rely on your basal rate to start off, automated insulin delivery. But over time, the system learns through the turtle Gary informed that is delivered by the system. So the system knows about this, and can rely on this information, because it's reliable come through the system to augment insulin delivery. So you might have a small child who only has 10 units of insulin per day. Now system is not going to give too much insulin, based upon the fact that it knows that in the last few days, it's never given more than 10 units a day. And so the safety constraints are personalized for that user. And on the opposite end of the spectrum, know, we have users that use 100 units a day. And in that case, the algorithm knows that it can give a lot more insulin, and this person will tolerate it quite fine. Because you know, when you have insulin is unlikely to make much difference for this person who takes 100 units a day. And so as it accrues that information over time, the algorithm does adapt the ability to know how much insulin it delivers based on that information. So what it means is that, in order to get the results we got, you know, you're not having to tweak basil rates on an hourly basis. Sometimes I've seen, you know, people have different basil rates every hour. And what we're really striving to do here at Insulet is create products that reduce burden for people. And that includes including, you know, optimizing settings, so that people can get, you know, so that everybody can get good glucose control and, and not have to rely on perhaps educators and clinicians at the academic centers who are familiar with these devices to really get those good results.

 

Stacey Simms  19:38

So I'm just trying to understand the the automatic adjustment that you're talking about there based on the total daily insulin. So if after a few weeks of using Omnipod five with Horizon, a person should expect to not adjust basil rates should like what should they be seeing because if like let's say as someone has six different basil, right When they start on the system, what what's happening? Right? What's going on? Are they Is it like the other systems where it's adjusting every five minutes, it's giving you boluses. If needed you How is the smartness of the of the pump working there?

 

Dr. Trang Ly  20:12

Yes, if you had six different rates running for 24 hours, initially, the algorithm would take that information and would have bent in front of every every five minutes based upon the inputs that were provided to the system, as well as how your CGM is tracking how much insulin on board, you have all of those things. So at all times, the system makes a influence decision every five minutes. So that occurs, as soon as you put the system into automated mode. That happens all the time. And when people ask me about order corrections, I say, yes, this system automates and make some adjustments every five minutes to drive you towards your target glucose. So corrections are incorporated within the system, we don't consider any difference between basil modulation and what was modulation of insulin is insulin. So every five minutes, you're getting a essentially order correction if you need it. But that works very similarly to, you know, the systems that are currently on the market. And over time, the those six basil programs that you have really not utilized in the system at all beyond that first part. And so if you are running high for whatever reason, and you know, you you tweak other things, but not your basal rate. And so I'd say in in that way, you know, our system is more similar to the Medtronic system. And in that way that the basil rates do not directly inform automated insulin delivery. But things that are still under your control at all times is influence coverage, share your correction factor, target glucose, correct above all those settings that have always been within on the pod, and also very similar across many bolus calculators all stay the same. So you're always going to be sort of always going to be directly in control of all those fat. And so if you're running high, it might might be that you need more corrections over time before your system adjusts to that higher insulin requirement. But

 

Stacey Simms  22:34

you're in control, oh, wait, target number, but only only down to 110? That's right. Gosh, I have so many questions with the automated systems. I think you mentioned this, but I'm not sure. What about insulin duration, is that something that the user can change? Or is that something that is set,

 

Dr. Trang Ly  22:50

so there, so the Dow system, the user can change that, and how it manifests itself is that it will inform the duration of insulin action for all those manual boluses that you deliver. So if you're someone who's very sensitive to insulin, and it hangs around for a really long time in your body, and you have a six hour early insulin action, then you can program that until you know your bolus of insulin that you deliver at 6am in the morning, that's going to take till midday before it disappears from the system, as it knows that all of those will still be accounted in the same way with the duration of insulin action that you provide to the system. In terms of the automated insulin delivery, we have the intellects, proprietary duration of insulin delivery, that is the input to the insulin model from which we deliver that insulin that is consistent, and is just one value. And it's the same value and the algorithm that's been tested across the board from in all of our clinical trials. So that does not change, and is within the algorithm that dictates that five minutes away insulin delivery.

 

Stacey Simms  24:11

To me, that was one of the big surprises of using an automated system. We have, you know, My son is 16. And we started using an automated system when he was what 14. So you're in the middle of those fabulous teenage years, and he's using tons and tons of insulin. And it seemed to me that we needed an insulin duration of like two to three hours. And when they switched it on Tandem. It's it's five, I really fought on that thinking this is going to be a disaster, and it was fine. It worked really well. So it's one of those interesting things once you get an automated system and realize this is my opinion, once you realize how much work you were doing to try to stay in range. It's kind of nice to let that system take over once you trust it. And I would assume that that's what you found in these studies. I mean, you mentioned that people spent more time in range, but let me give you the floor. Take a minute or two to talk about. I've seen the study You know, you've been kind of putting them out with different age groups over the last couple of weeks and months, take a moment to brag about the studies.

 

Dr. Trang Ly  25:08

Yeah, we're so grateful to the diabetes community who really gave this product life through our clinical studies. So I'm just deeply grateful for every patient and family who took part in it. Because without them, you know, be a product, but it wouldn't be Omnipod. Five. And so it was really a ton of work that we I feel like has been many years in the making. Yeah, we've worked really hard on this algorithm to get it pretty much as good as it could be. And, you know, back in 2019, as we were preparing to do these clinical studies, I really wasn't sure about how our results would stack up. But I have to say that I'm completely blown away by how well our algorithm has performed. So in the talk first about our six to 70 year old age group. So the first lot of results that came out came out in March of this year, we had essentially two groups. So we had the children, which were six to 14 years of age, and then the 14 to 17 years of age, which is the adolescent and adult group. So I was just covered the adult group there. So we saw and time in range improvement to 74% in the adult Group, a once the reduction down to 6.8%. And then very minimal hyperglycemia. If you look at our hypo compared to other published data out there, it's the lowest hypo, which we measured by time under 70, compared to all the other groups. And in terms of the children, there's six to 13.9 years of age group, we got to a timing range of 68%. And this was equivalent to 3.7 hours per day improvement. So really remarkable improvement in timing range. And in terms of a one see improvement, we got that down from 7.7%, down to 6.99%. So really remarkable reduction in a one C. And what's super, super exciting is that just recently at Ada to see or wishes a couple of weeks ago, we showed that in the extension faces after the main three month pivotal study, everyone could continue using it if they chose to. And we saw a further reduction in a one C, which is just incredible. So in both the adults and children, we saw a continued decline in a one C. So just really super exciting to see that, you know, our product continues to be helpful for these patients with diabetes.

 

Stacey Simms  28:05

Let's talk a little bit about the the setup of the system. You know, when in the very beginning of the interview, I asked you to kind of describe it. And it's Omnipod Dexcom, G6, and then a controller of some kind. Let's talk about the controller. Last I had heard this was going to be the PDM. If needed, the more traditional I guess you'd call it but you'll expLyn it to me or an Android phone. Tell me about the controller in the short term. And then we can talk about what you're planning.

 

Dr. Trang Ly  28:32

Yeah, that's right. So we will have the controller device. So we have an Insulet provided controller, which our were choosing to use that word over PDM. Because not everyone knows what a PDM is that yes, that controller device, we will always ship with our product. And so you will be able to use that in a locked down device which can only communicate with pods and can't really do much else with it. And but users will have the option to download an app from their from selected android phone to also have that same experience. So it's the exact same app that would be that would exist on the controller. And you would be able to essentially control your parts and replace that controller with the Android app.

 

Stacey Simms  29:25

I should have said the PDM stands for what personal diabetes manager. That's right. Okay. So that's an antiquated term now, though, so we'll put that aside. But to be clear, so if I have the right Android phone, you're seeing this is not a lockdown Android phone, I can get this the app and I can use my personal phone to control my Omnipod five with horizon system.

 

Dr. Trang Ly  29:47

Yes, that's right. That's what's currently in front of FDA right now.

 

Stacey Simms  29:51

Do you know and again, if it's up to them, or you can say I know we're limited sometimes what models or is there a list somewhere?

 

Dr. Trang Ly  29:57

Yeah, we haven't. I don't think We have indicators or phone models that will be available at any time. But we'll do that soon after launch will list those out that they will be as the first offering selected Android phones.

 

Stacey Simms  30:14

And I would assume the plan is to eventually go to all types of phones, including apple. That's right. My question for Omnipod is always what I'm about to ask you. But phone control makes it a little bit obsolete. And that is why no button on the pod why not even like a one dose one unit or something on the pod?

 

Dr. Trang Ly  30:34

I've been asking this, since I've had the podcast. Yeah, I think he just originated with the original design. And I think perhaps, because it really started originally with the idea of children using our device, and having that separate controller to track all the information. I think just at that time, because it was primarily a product for children, we wanted to make sure that infant delivery was always, you know, very intentional, and not unintentional. And so would always to have that remote control potential and and not have any, you know, button on the pod, which could lead to accidental or insulin deliveries, unintended,

 

Stacey Simms  31:21

or just a couple of laundry list type questions. Dexcom has already announced that they're going to seek FDA approval for the g7. Soon, I would assume that Omnipod will eventually, you know, work with the g7, which should users should be concerned at all about that kind of compatibility?

 

Dr. Trang Ly  31:38

Yeah, I think eventually, you can expect that, you know, systems that are integrated with G6 Today, we'll be working towards g seven in future. You know, I think the whole idea of interoperability reach was beheaded by the FDA really enables companies to work faster to integrate with future versions of systems. So you know, we we want to be at the leading edge of that innovation. And I think that will come with time. We I don't think we've announced any times or dates regarding that. But it is something that, you know, we fully intend to support.

 

Stacey Simms  32:17

And this may be another business type question. But everyone who's using Omnipod right now, what's the plan for current customers? We're getting ahead of ourselves, I know the system's not approved. But can people using arrow so dash expect to kind of be seamlessly switched over to Omnipod? Five with horizon?

 

Dr. Trang Ly  32:35

Yeah, I don't think we have released all the information regarding how we're going to transition our current customers. Yes, I don't think that that is publicly available yet. But we, you know, one thing we do strongly believe in is supporting our current customers. And what we have said is that Omnipod five will be available via the pharmacy channel at price parity kadesh. And so what that means that if you are already receiving cash today that you're going to be in a very good position to have coverage for Omnipod. fi. And but we haven't detailed the information regarding you know, how we're specifically transitioning every single patient at this, at this point,

 

Stacey Simms  33:25

separately from the pod. tide pool loop is also in front of the FDA, as you and I are speaking, I'm not even quite sure really what to ask you about this doctor, like because I know it's coming from tide pool. But can you share anything about the relationship from Omnipod to Tandem? And how the loop project is going? It's kind of a it's a different animal kind of out there. But I don't want to leave without asking you about it.

 

Dr. Trang Ly  33:51

Yeah, you just said Omnipod to Tandem, but I'm

 

Stacey Simms  33:54

so sorry. Yes.

 

Dr. Trang Ly  33:58

Yes, yeah. Well, that is title program. So it's best that you speak to Howard about that. But it is a program that we support. And and we certainly, you know, believe in interoperability and supporting points for our users. And yes, you're right. I believe the last update is that it is currently under review with FDA wouldn't use the dash parts, or does it use it with Omnipod? Five. So it's, it's not it's not going to be backwards compatible with dash pod

 

Stacey Simms  34:35

guidance. My next question was, so if Omnipod five with horizon is approved, Omnipod is manufacturing the same pods for both systems. That's right. I know you know, I'm not sure we're supposed to talk about it. But I know you know, because you've spoken to the loopers groups and you speak to people all the time that there's a bunch of people using the older pods, the arrows, pods, I believe for a nod FDA approved system, they're looping with the separate from title loop, they're looping with those pods is only going to keep making those pods once this new system is approved,

 

Dr. Trang Ly  35:10

we haven't said exactly when we will stop making those pods. But I think the community should expect which and I know that they already do that at some point in time in the near future, we would need to stop making those pods. And that's for a variety of reasons. But as you will know, Stacy, and many of your audience will know, you know, that is much older technology. And you know, we prioritize innovation that is going to work well and be safe for our users. You know, that's partly why we moved to dash to integrate Bluetooth technology. And then which has enabled us with Omnipod, five to talk via Bluetooth to CGM. So that type of safe integration is really important to us in our future offerings of product. And so at some point in time, that will, we will need to start making that and also, you know, that is with all the technology, all the components, and etc. So, once that happens, though, we will let the community know with sufficient time so that people can prepare for alternative methods of therapy. And hopefully that will be Omnipod. Five,

 

Stacey Simms  36:25

you've been so generous with your time, I just have a couple of more questions. I really appreciate it. One of the questions that was asked in the podcast Facebook group was when approved, how will the training for this go? In other words, with control IQ, I sat down, I took a course I took a quiz. And once I passed it, my doctor had written a prescription. And we got the downloadable, you know, into the pump. And we were off and running did not meet with a diabetes educator or an endocrinologist to learn how to use control IQ. What will the system be for teaching people and getting Omnipod? Five to them?

 

Dr. Trang Ly  36:58

Yeah, so for people who are already using Omnipod dash, you can expect that the experience will be similar to what you just described for control IQ. So you will not have to meet someone in person in order for you to start that system up. So it will be similar in a training quiz, number of steps. But you can do it all self directed and be often running on Omnipod. Five, or you can choose to speak to someone or meet in person with an educator if you wanted more information about for instance, how the algorithm works or whatever question you had on your mind. But for brand new users who've never used a pump before, then it will there will always be in person training, or virtual training. You know, there's some things that you we still feel that is necessary to cover, you know, basics of pump therapy that will require meeting with their certified trainer to go through. But yes, we're current on the Pog dashes as you can expect the transition to be fairly seamless.

 

Stacey Simms  38:08

Another question that came up was about insurance coverage, but particularly Medicare. Can you speak to that? Yeah. So

 

Dr. Trang Ly  38:15

currently, we have Medicare coverage under Part D, which allows for pharmacy coverage of the pod. So we do have that. And they only came in recently in the last I'd say three years or so. So once that came through CMS, we worked with many plans to get Omnipod covered under that peptides for Medicare. So one of the things that, you know, we're working on well, FDA clearances, is still under review, we are working on making sure that we get as many people covered as possible. When Lord, they come. So yeah, it's a major priority for us to make sure that our patients get covered for this product.

 

Stacey Simms  39:06

You referred back a couple times to your days as a pediatric endocrinologist. How exciting is this for you? You know, the people that use this product, you know, the people that use other automated pumps. Can you speak a little bit just from your personal side about the excitement because you know, this is going to help people?

 

Dr. Trang Ly  39:25

Yeah, it's just incredibly exciting. And maybe not everyone knows about this. But yes, Stacy, as you mentioned, I am a pediatric endocrinologist. And it's actually about 10 years ago now, but I did my very first study in automated insulin delivery and that was back in Perth in Western Australia. And in that study, we use a Medtronic pump add to Medtronic sensors and a blackberry phone and the algorithm was on a blackberry phone and it was I haven't mentioned this to many people. But those those sensors were, you know, were challenging at times to deliver insulin from. But it was such important studies, in terms of proof of concept to show that, you know, we could augment insulin delivery and, and making that decision every five minutes gets you in better glucose control. And it was really extraordinary. And I still remember the very first time, the very first patient that I put the system on, and, you know, and I was watching that insulin being delivered. And I remember just like hugging the participants, Mom, because, you know, we just both knew how incredible this was going to be if, if this could reach masses of people, it's always been for me, something that will be realized. And, you know, it has been through really great products like control IQ. And you know, soon Omnipod five will be out with a great algorithm. And because we just know that this type of technology is what is going to allow parents to sleep at night and let people be comfortable with their diabetes and be more confident about it so that they can focus their brains on other life decisions and not be so consumed by their diabetes. And so it is really incredible for me to be able to see the results of our algorithm just works so well in such a huge population of patients, even in just in clinical trials today. And I just know that there's going to be incredible impact from this product in future when we launched.

 

Stacey Simms  41:47

Well, thank you so much for coming on and sharing so much information. We're all excited to see what happens next. And I hope that you are you know, other folks or Insulet will come on and share more information, you know, fingers crossed as the rollout happens. So thanks so much for joining me.

 

Dr. Trang Ly  42:02

Thank you so much. So happy to be on.

 

Announcer  42:09

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  42:15

Lots more information at Diabetes connections.com. I know the one question everybody asks that we cannot answer is when will this be available, it will be available when the FDA approves it. And you know, that could come any minute it could come in a few months, you know, we are not privy to that information. But once it is available, it will take a little while to roll out. So Omnipod I'm sure we'll make a lot more information available as we move forward. We'll talk to them again. And we will answer as many questions as possible. Also got a lot of questions about insurers, that's going to depend as well, quite often, insurers will not initially cover new products. I know Omnipod is talking with everybody. But it may take a little bit of time. So we'll circle back on all of that it is difficult to pick and choose the listener questions that I asked but I really try to focus on what I know the person that I'm talking to can answer and I thought Dr. Ly was was really fabulous and spoke to me frankly, for longer than I expected. So I really appreciate her sharing so much information with us. And I hope you found that helpful.

All right. Diabetes Connections is brought to you by Dexcom. And I do want to talk for a moment about control IQ. You heard me mention that several times during the interview. That is the Dexcom G6 Tandem pump software integration. When it comes to Benny's numbers, you know, I hardly expect perfection I want I'm happy I'm healthy. I have to say control IQ has exceeded my expectations, Vinny is able to do less checking and bolusing and is spending more time in range. His last couple of Awan C's were his lowest ever and this isn't a teenager, the time when I was really prepared for him to be struggling. His sleep is better to with basil adjustments possible every five minutes, the system is working hard to keep them in range. And that means we hear far fewer Dexcom alerts, which means everybody's sleeping better. I'm really so grateful for this. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

Before I let you go, we're actually traveling this week. So the interview with Benny about Israel is coming up and thank you so much for all of the questions that you have sent in. There was a Facebook group posted Diabetes Connections of the group. If you want to chime in and ask me some questions to ask my son who recently got home from one month overseas. He is 16 and he was with a camp group but it was not a diabetes camp. He's home safe and I've done some debriefing with him. It was really interesting. And Gosh, teenage boys. So interesting. I can't wait to share some of his stuff with you. And some things I'm not sure I will share. No I mean we're pretty much an open book but he right he doesn't really handle diabetes exactly the same as I would but home safe and sound and really did very, very well. reminder that on Wednesdays I do in the news live On Facebook on Diabetes Connections, the Facebook page, and that becomes a podcast episode on Fridays I, as I said, I'm traveling, so hopefully technically all will go well, we shall see. But that in the news episode has become a lot of fun, frankly, and people really enjoy that still short, so I'll put that out as well.

And then in the weeks to come, I have some great interviews for you. We have interviews about sports and being very active. I have an interview with the folks that have Afrezza that I'm really excited to bring to you. It's been a while since we spoke to them. And of course, that interview with Benny, so lots to come. thank you as always to my editor John Bukenas from audio editing solutions. I 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  45:46

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jul 30, 2021
It's "In the News..." the only LIVE diabetes newscast! Our top stories this week: 100 years of insulin, the largest genetic study of type 1 diabetes is complete, approval for a new type 2 meds for teens, research moves forward on an insulin-producing implant and an Olympic hopeful starts a diabetes sports foundation!.
Watch "In the News..." live every Wednesday at 4:30pm EDT on the Diabetes Connections Facebook page

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.  I’m on the road, so apologies if the audio and video are a little bit off but I think we’re good enough. And 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

Lots of articles, op-eds and celebrations to mark this week’s 100th anniversary of the discovery of insulin. In July of 1921, the collaboration of Frederick Banting, Charles Best, James Collip and John Macleod led to the isolation and purification of insulin.

Most marking the occasion this year are focusing on access and affordability..

The International Diabetes Federation is launching a three year campaign to celebrate the advances made in diabetes, but also to call on more action to ensure all people living with diabetes have the best possible quality of life and health outcomes.

https://insulin100.utoronto.ca/

XX

The largest and most diverse genetic study of type 1 diabetes ever undertaken is complete. Researchers at UVA say they’ve identified the “most likely causal genetic variants associated with risk and their target genes.” They hope the results will help lead to better medical and drug treatment or possible prevention and genetic treatments. This study looked at more than 60-thousand people. and identified 78 regions on our chromosomes where genes are located that influence our risk for Type 1 diabetes. Of those, 36 regions were previously unknown.

https://news.virginia.edu/content/largest-ever-type-1-diabetes-genetic-study-identifies-potential-treatment-targets

XX

New partnership announced between LifeScan the glucose monitoring company and Noom, a digital health platform focused on behavior change.

LifeScan will be the first digital health diabetes management company to partner with  Noom's Diabetes Support Program. The goal is to bring personalized health insights to better address eating habits and weight management.

The new fully-integrated OneTouch Solutions program will be available first to consumers in the US starting this Fall.

https://www.lifescan.com/news-and-updates/2020-press-releases/noom-to-launch-digital-diabetes-and-weight-loss

XX

AstraZeneca gets approval for its once weekly diabetes medicine  Bydureon in kids as young as ten.

 

The injectable is used for people with type 2 diabetes. The approval comes about a month after data showed the drug significantly reduced blood glucose levels in adolescents compared to placebo. Bydureon is already approved for adults with type-2.

The only other non-insulin options available for adolescents with type 2 have to be taken daily.

https://www.reuters.com/business/healthcare-pharmaceuticals/astrazenecas-weekly-once-diabetes-drug-gets-us-approval-children-2021-07-23/

XX

Rice University bioengineers are using 3D printing and smart biomaterials to create an insulin-producing implant.

The three-year project is supported by a grant from JDRF. They researchers will use insulin-producing beta cells made from human stem cells to create an implant that senses and regulates blood glucose levels by responding with the correct amount of insulin at a given time.

The goal here is to show their implants can properly regulate blood glucose levels of diabetic mice for at least six months. So we’re really early on here but it’s an interesting new way of looking at reproducing what the pancreas does.

https://indiaeducationdiary.in/rice-university-rice-team-creating-insulin-producing-implant-for-type-1-diabetes/

XX

A judge rules that Roche did NOT infringe Insulet’s patent – this case brought over a patch pump sold in the UK. We told you about this case a few weeks back.. Insulet claimed because of it’s Omnipod patent, Roche didn’t have the right to sell it’s Accu Chek Solo. The judge ruled for Roche.

https://www.jdsupra.com/legalnews/roche-diabetes-care-succeeds-in-uk-3307644/

XX

An Olympic hopeful with type 1 is sitting out the Tokyo games due to an injury.. but she’s also inspiring others and starting a new non profit to help other people with diabetes. Long jumper Kate Hall Harnden was on track for the 2020 Olympics, but was injured this past January

Diagnosed at age ten, she and her husband have formed the DiaStrong Foundation, which aims to give financial assistance to people with diabetes who want to improve in their sport and diabetes management.

They’ve planned to launch grants for financial assistance in July 2021, and those details are being finalized. They’ll host two camps in Maine this year.. one for teens and one for any age.

I’ve linked up to a great story in DiabetesMine if you want more info..

 

https://www.healthline.com/diabetesmine/kate-hall-diabetes-olympic-hopes

XX

That’s In the News for this week.. if you like it, please share it!

And join me wherever you get podcasts for our next episode -Tuesday –  I’m talking to Omnipod – we’ll get a update on the Omnipod 5 with Horizon system. This week’s interview – the one that’s out right now – is 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.

Thanks and I’ll see you soon

Jul 27, 2021

When Gary Hall Jr was diagnosed with type 1 diabetes in 1999 his doctors told him to give up competitive swiming and drop out of the 2000 Olympics. Instead, he charged ahead and became the first person with T1D to take home an Olympic Gold Medal. Hall won Gold in Sydney in 2000 and again in Athens in 2004, adding to the medals he'd won in 1996 before his diagnosis.

Stacey caught up to Gary at this summer's Friends for Life Conference and asked him how he got past what his doctors told him. He also shared what he tells newly diagnosed families today.

Plus, Benny is home – after a month abroad.. Stacey has and update on her son's trip to Israel and how they managed his diabetes for that time.

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 transcript 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 with the Summer Olympics underway and swimming taking center stage this week, I caught up with gold medalist Gary Hall Jr. The very first person with T1Dto take gold. He talks about what's changed since then.

 

Gary Hall, Jr  0:40

I rely heavily on the convenience of CGM, I mean being able to see where my levels are trending. In order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day,

 

Stacey Simms  0:55

when Gary was diagnosed in 1999. He was told he'd never swim competitively. Again, we talked about how he got past that and what he's telling families today, and Benny is home my son after a month abroad, I have a little bit of an update on how it went. 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. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben, he was diagnosed right before he turned two back in 2006. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. That's how you get the podcast.

And one of the fun things about going to diabetes conferences is that you don't know who you're going to run into. It turns out that just a few weeks before the postpone to Summer Olympics were to start there was an Olympic gold medal swimmer at the recent friends for life conference. So great to be able to go back in person finally kind of feeling our way through this and hoping that, you know, we'll see what happens for the rest of this year but hoping that we can get back to it. But once I saw that Gary Hall Jr. was speaking to families, attending friends for life for the first time. I knew I had to ask him to be on the show. So he graciously agreed he met me just a few hours later we did this interview in person you will hear me during the interview referred to how far he had to walk and I mean it. This conference center is huge. And I appreciate him basically meeting me at the farthest point from where he was. And you'll also likely hear some background noise or some music.

If you are not familiar Gary Hall Jr. represented the United States at swimming in 1996 in 2002 1004, it's really quite a family legacy. His father, his grandfather, and his uncle all competed on the US Olympic swim team. Paul won silver in 96. And then he was diagnosed in 1999. With type one, his doctors told him he would never swim again competitively. But then in 2000 in Sydney, he became the fastest swimmer in the world. He broke his own record in 2004. And by the time he retired from competitive swimming in 2008, he had won 10 Olympic medals, including five gold. In these current Olympics.

There is a competitor from the US with type one, Charlotte Drury. She's not a swimmer. She's a trampoline gymnast. And I talked about her during in the news last week, our last episode hoping to have her on the show in the near future. I'm really interested to hear the difference because it's only been what a little bit more than 20 years since Gary Hall Jr. was diagnosed and told no way dropped out of the Olympics, you'll never do it. And Charlotte Drury was diagnosed and three weeks later returned to her full training as she was diagnosed this year, she was diagnosed right before the trials. So it's a completely different world in these 22 years, let's say in between those diagnoses. So I'm really interested to kind of talk to her in the near future hopefully.

Alright, so let's get to it. 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 autoinjector to treat very low blood sugar gvoke hypo pen 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.com slash risk.

Gary, thank you so much for walking the length of the convention center to talk to me today. I appreciate it.

 

Gary Hall, Jr  4:50

Yeah, I'm getting my steps in today. I feel really good about it. And I'm also having a lot of fun. Awesome. I'm

 

Stacey Simms  4:56

glad to hear that. You spoke to the first timer. Families this morning people who have are experiencing their first time to friends for life. Why was it important for you to speak to them? What were you talking to them about?

 

Gary Hall, Jr  5:09

The antiquated expression is shell shocked. Now, I think it's PTSD. But when you go through a diagnosis, it hits your heart, it hits your family members and loved ones really hard. And you have a lot more questions than answers. And desperate is a word that comes to mind when reflecting back on my own diagnosis, what makes this such a great convention, such a great organization, friends for life, and children with diabetes. And everybody that attends, you know, it's that sense of community here that we're not in this alone, that there are others out there living and dealing with this condition in a similar way that understand your struggles. And that's really all we want. In some ways, it's just to be understood, you know, in such an emotional, traumatic time and experience. And so for first timers, many of them are newly diagnosed, or the parent of a newly diagnosed child, it means a lot to me, because I haven't forgotten what it's like, in that short time after a diagnosis and to be able to offer some support and encouragement and hope, hopefully, hope, to those makes me feel really happy.

 

Stacey Simms  6:34

But when you were diagnosed, there was no one to lead you through it. There is no had been knowing with your experience or the experience you wanted to have. And you've very famously shared, you know, what a difficult time that was and how emotionally low it brought you. I don't want to take you through that whole thing. But I'd be curious to know, where you found inspiration. How did you get through that time when they said sorry, kid, you're done?

 

Gary Hall, Jr  7:00

Yeah, it took time. It took time, you know, there are stages of grief, and waited my way through that mark. And found, in some ways, fortunate that I was a top level swimmer prior to the diagnosis. Because I had people reaching out to me, this is unusual, that's not the norm. And so I was able to very early connect with jdrf children's Congress, and children with diabetes. I was here in 2005. When this was a new thing.

 

Stacey Simms  7:40

I'm gonna ask you about that. I heard there with some some swimming some kids. Yeah, it stands in the pool.

 

Gary Hall, Jr  7:46

You can count on that when it's here at the Coronado Springs Resort. Disneyland world. Yeah, lots of swimming. Lots of smiles. Good memories.

 

Stacey Simms  7:57

I bet I bet. But I mean, not to dwell on the difficult, but it's wonderful that they reached out to you. Right. And that is, that is an unusual experience. But you still had to find a way to say to yourself, my dream still gonna happen?

 

Gary Hall, Jr  8:12

Yeah, there was no certainty in that pursuit. I didn't know what was possible. But this is life, right? Like, we don't know what we're capable of, until we put ourselves out there. And I was willing to try and was really fortunate to connect with Dr. Anne Peters and, and has been here in the past and spoken so many people and she's great. She's, I love her. I love hen Peters. She was the inspiration. It only came in the way of Yeah, let's give it a try. You know, is that that was such a departure from these other doctors that I had initially come in contact with that, um, yeah. If you set your mind to something and try to figure it out, you're gonna have some success, eventually. So that's what we've kind of set to work doing. And like I said, there's no certainty that I would be the fastest swimmer in the world one day, but that's what happened.

 

Stacey Simms  9:20

Yeah. When you look back at that time, and you think about how you manage diabetes Now, what's changed for you?

 

Gary Hall, Jr  9:29

The game changer in diabetes management was the continuous glucose monitoring device and Dexcom came out with that device just changed with diabetes management, and it was just almost like, how come I I couldn't have had this 20 years earlier? You know, or you know, I guess it wasn't that long when I but 10 years earlier. I rely heavily on the convenience of the sea. gam I mean, being able to see where my levels are trending, in order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day. And that doesn't even come close to comparing to you know what the Dexcom has to offer? Yeah, that's been the biggest change area. You know, in 2000. I was diagnosed in 99. last century,

 

Stacey Simms  10:25

turn of the century turn of the century,

 

Gary Hall, Jr  10:27

you know, the pumps were really just becoming popularized at that time. And I like pumps, a lot of people swear by them and love them. But it was just I never felt connected. That's the first time I've ever used that. Upon I just caught myself. Anyway, I yeah, I just never the attachment. And maybe it was because I was swimming in the water and just wearing a skimpy Speedo or whatever body conscious, I don't know. But I was able to get over that with when the CGM and in the street behind the speedo location.

 

Stacey Simms  11:05

We get a little personal on this show.

 

Gary Hall, Jr  11:06

Yeah, so yeah, but the benefits to me were worth a wearable. Yeah, I live with the pump companies were doing but at the time 2000 everybody was, you know, it was parading in the convention halls. You know, the pumpers, you know, is this big movement and game changer, and you know how diabetes managed, but I found after trying all the pump set, you know, I was getting good, you know, range as long as the testing was the key. And as far as long as I was willing to give myself a shot. You know, pen needles are pretty easy to take. So that's just personal preference.

 

Stacey Simms  11:46

I just want to ask you about the 20 finger sticks a day, because I remember my son went seven years without a CGM. And it was, especially in the pool, this pruney fingers, it's really hard to do finger sticks. Was that an issue for you? I mean, do you have memories of like, oh, not this one. I'll try this finger or I mean, it must have been slipping around on the pool and the wet test strips.

 

Right back to Gary answering that question. But first, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's the little tasks all adding up. Are you sick of running into strips? Do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line to the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections.

Now back to Gary answering my question about what it's like checking your blood sugar while you're swimming.

 

Gary Hall, Jr  13:00

So yes, drying off properly is very important. There are times where Yeah, there's just a watery blood thing I don't Yeah, it was juggling, you know, and a lot more to carry and a pocket. You know, I like to travel white empty pockets. So now I've got my smartphone and, and a pen. And so I appreciate probably that more than anything because I you know, bulky pockets, slow you down.

 

Stacey Simms  13:29

And my listeners will definitely want to know, if you have any tips and tricks keeping that Dexcom on in the water. Everybody's got a different method because everybody's skin is different. I'll give you that disclaimer. Any advice or any thing to share?

 

Gary Hall, Jr  13:41

Yeah, I know. I use duct tape.

 

Stacey Simms  13:45

I need to just narrate. He looked around almost ashamedly. Yeah, I know.

 

Gary Hall, Jr  13:53

I'm just hardcore that way. I guess I'm sorry. I kind of like the roughness of it. And so yeah, when I need securing I get that that silver ducted.

 

Stacey Simms  14:06

I'm almost Sorry, I asked. You're meeting kids here. You're talking to parents. You know, this is a family conference. There are a lot of adults with type one as well. But I remember when my son was first diagnosed, anybody that looked like they were living well, with type one, I would just great. How did you do it? What did you do? You know, what's the key? And I know there's not really an answer for that. But I'm curious what you say, because I'm sure parents have already asked you.

 

Gary Hall, Jr  14:30

What do you have to do to stay healthy? And?

 

Stacey Simms  14:34

Well, I think it goes beyond that. I'll change my question. Beyond keeping your blood sugar in control and listening to your mom. Right and doing everything. Yes, always. I'm curious if there's more to it, because for me, I find that my son thrives the best when he is he's allowed to take risks. He knows that we trust him. And even if he messes up, you know, hopefully it's in a safe enough environment. He's 16. Now, just for context, So we're giving him a longer and longer rope. And I think that's important for thriving with diabetes is letting your kids make mistakes, letting yourself make mistakes. I'm curious if anything like that kind of helped you. I mean, you're somebody who had such high goals that had to help you thrive as well,

 

Gary Hall, Jr  15:16

well, I've got children, my daughter is 15, my son is 13. Now, and they don't have diabetes, knocking on wood, and they're at an age where I remember from my childhood independence as an important thing. And as a parent, you want to protect them in a shelter them, right. And even more, so when your child has diabetes, we have to let them go, they have to leave the nest at some point, and develop that sense of independence. And so that's difficult for a lot of parents here. Especially newly diagnosed, you know, that really have that instinct to protect and shepherd and, and so then there may be some mess ups, you know, and learning curve, and trial and error process, there's air involved, and there certainly was in my learning curve and diabetes management. Eventually, you get through that, and they're able to take some ownership of it. And I think for me, I've always had a fierce sense of independence. And so that was really important for me, not just in my pursuits in the pool, but also in in diabetes management.

 

Stacey Simms  16:34

Summer Olympics are coming up. What can we look for? Like, can you tell us anything? We should be like watching behind the scenes or stuff we don't know, or, you know, fun stuff about swimming? I mean, you you made such a show of it.

 

Gary Hall, Jr  16:48

That sport is entertainment. So don't fault me. No, no. I had some fun. That's all I was doing. horsing around, but it for Look out, I went to the Olympic trials for USA Swimming. They were in Omaha, Nebraska just a couple weeks ago, and saw the team qualify. And what an intense meat that is, you know, they take first place and second place, third place goes home, I was able to see some outstanding swims. I'm a fan of the sport. I've been following it closely my entire life and the guy, the next guy, you know, because there's certainly been a lot of merit of, you know, Michael Phelps, his retirement, he's been a pillar of USA Swimming for so long. You know, who's going to replace that pillar. Caleb dressel is the guy. And everybody will know his name after these Olympics. He's really just a phenomenal swimmer and great role model. I expect good things out of him on the women's side. Katie ledecky, she was around in the last Olympics. She is a sweetheart, she's a darling, she's exactly who you want your daughter to grow up to be like, so Team USA is in good hands. There's a lot of swimmers with them, shoulder to shoulder, representing the United States and we can count on them to do a great job and represent us really well.

 

Stacey Simms  18:10

And then just one last question before I let you go. Kids listening families listening with type one who want to swim, high school level college level, maybe dreaming about the Olympics. Any advice for them? I guess I'll be fishing here a little bit. But feel free to get specific. Obviously, you want them to follow their dreams?

 

Gary Hall, Jr  18:26

Yeah. Listen, I say it often, you know, you don't have to win an Olympic gold medal to enjoy the benefits of sport. You know that there is social camaraderie, this built in a support system and you're surround yourself with other young ambitious people that have goals and work hard to chase them down. And, you know, this is an exclusive to swimming. Obviously, I'm a little bit biased. I think it's the greatest sport in the world. It is but you know, we'll we'll accept the benefits of other sports in addition to I love sport, I love what it teaches the data. It's overwhelming kids that are involved on us in a sports program on a sports team average, they outperform their classmates by one full grade in the classroom. You know what it does in stress reduction, and overall health benefit is tremendous. You know, if there was a single drug that had the efficacy of exercise and provided the same benefits of exercise, every single doctor in the world would prescribe that. It doesn't have to be swimming doesn't have to be for a gold medal. But go out and have some fun.

 

Stacey Simms  19:43

Gary, thank you so much for talking to me.

You're listening to Diabetes Connections with Stacey Simms.

Lots more information about Gary in the show notes at diabetes dad connections.com or wherever you're listening, most podcast players will let you access the notes. But I do put a transcript in now to every episode. And that can get a little bit long. So if you don't like the way it looks in whatever player you're listening to just head on back to Diabetes connections.com and click on the episode homepage. And I'll be honest with you, I don't usually share this kind of stuff, but I kind of wish I prepared a little bit better. I mean, I didn't realize I was talking to Gary until I talked to Gary. Right. I met him there. And he said, Sure, I'll come on. And then we did the interview. And he has so many other things I wish I had asked about he punched a shark. I guess this dude who's in the middle of a shark attack, the shark was attacking his sister, and he punched the shark. I mean, this is a crazy story, his sister's okay. And he's also been very outspoken about doping during the Olympics. I'd like to talk to him again, maybe we'll be able to do an Olympic Roundtable, one of these days with the other athletes who have competed, but he was very gracious to talk to me and to make the schlep all the way down the hallway to where I was, and you're laughing, it probably takes a good 15 minutes to get where I was in the conference center there at the beautiful Coronado Springs Resort at Walt Disney World. That's where they have the friends for life conference every year in July.

All right, up next, Benny is home. Many of you know that I haven't really felt like I could breathe for the month that he was overseas. So I'll tell you a little bit about how we handle that. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with get comfortable with how you want everybody to use the system. Even if you're following your young child. These are great conversations to have, what numbers will you text, how long we will need to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that's helping Vinnie with any big issues using the data from the whole day and night, not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes, Connections comm and click on the Dexcom logo.

All right, so Benny is home. As I am taping this episode. He's been home for just two days. Now we grabbed him up from the airport here in Charlotte and hugged him, I did not want to let him go. It was so nice to see him. So just real quick, if you aren't familiar, then he is 16. He's been going to a non diabetes, sleepaway camp for a month since he was nine years old. And it is with this camp, that he just went to Israel. And he was gone for a little bit more than a month. So how did we do it? How did we let him go with a non diabetes crew of people overseas for all that time, I'm going to do an episode hopefully with Benny soon I want to get his take on this. But I'll just give you an overview basically, of what we planned and how it went.

So the main thing to know is that Benny has been doing this for a long time when he goes to this camp. As I said, one month since he was nine years old, we do not use share, we don't use Dexcom, I am not a part of his day to day diabetes care. So I think that's the first big thing to know. And also the first big thing that went into really making sure that he knew what he was doing. He's proved time and time again, that he could do this. It's never perfect, I should probably have led with that. We don't expect perfect blood glucose lines and numbers when he's at camp. That's not part of our expectation, which I think helps a lot. And I am used to not really knowing what's going on for an entire month. Now certainly we check in with the medical staff, and especially when he was younger, we would have phone calls. And we did a lot of prep.

And we did a lot of prep here. So we made sure that the staff knew what was going on that he had diabetes, that he will be that he will be a little bit more help probably in certain situations that they had to make sure to store things correctly, not just the insulin, but storing all of the extra diabetes supplies. You don't want dex comms and pump and sets. You know, when you're schlepping across the Negev  desert, you really don't want those in your backpack. So where would we keep them that they would stay cool, you know, that kind of thing.

We decided to set up several different profiles in his pump, he uses the Tandem x two with control IQ, which was frankly a very big help on this trip. But we set up a few different profiles, the regular profile, a 15%, less insulin profile, any 30% less insulin profile, and we named them that 15% less 30% less, make it really easy for him to adjust as he got there because there were some times when they were incredibly active, you know, lots of hiking, lots of moving around lots of heat. We decided in advance, you know, had a lot of conversations about this that a staff member would follow is Dexcom. I will debrief Benny more about how this actually went. But my understanding is that the counselor who is known for years followed his numbers but only had the urgent low alert on his phone. So you know, he wasn't getting beeps all day long. And that seems to have worked out very well. I also followed I wasn't quite sure that I wanted to like I said, I don't usually follow him when he's away for that month at camp.

But we decided in this circumstance, it would be a good idea. But I had to have a plan. So Benny and I talked about what do I do? Right? What am I supposed to do from North Carolina? If he's beeping in Tel Aviv? So we decided that if he was low for a certain amount of time, if he was high for a certain amount of time, I would text Benny. And if I didn't get an answer, then I had a system set up in place where Okay, I would call the counselor who was following him no answer. I would call the counselor and staff who's in Israel, no answer, I would call the staff in New York. And we would go through that I never had a moment during the month where I had to call anybody or text anybody. But Benny, and I only did that, and we'll talk about the episode that we do together. There were a couple of times where he was not low, but it was alerting urgent low for longer than I would have been happy with. So that's why, you know, when he's low for that amount of time, I texted him, he said, it's fine. We resolved it.

That's about it. I mean, what other prep did we do? The prep that we've been doing since he was two years old, you know, my philosophy is trying to get him as independent, as confident as I can with diabetes, although I gotta be honest with you, that has come back to bite me because I did not expect him to be this into 16. And I was, frankly, very worried all month, but he did great. He really did. It's a lot to shoulder. It's a lot to shoulder at any age with diabetes, right at any time. But this in particular was a big challenge for him. I'm really proud of him. And I can't wait to hear although if you know, Benny, if you've listened for a long time, I'm also kind of dreading hearing someone. Say, but we'll be honest with you, and we'll share it all. So hopefully, that'll happen in the next month. I'll have him on the show to talk about his trip. But he is home. He did really well. And he's excited to be sleeping in his own bed.

Alright, before I let you go, we are traveling a lot in the next couple of weeks, just some family stuff. And I'm going to be at a podcast conference going to Nashville for podcast movement. So I don't think we're going to have any schedule interruptions. I've got it planned out pretty well. But hey, you never know. Please join Diabetes Connections, the group to stay up to date when stuff happens. I post there first, so you will know what's going on. But I think we're smooth sailing in terms of shows. We are talking to the folks from afrezza and I've got an omnipod update lots of information about what's in front of the FDA right now. Man, I hope that stuff gets approved soon, but we shall see. And then we're going to be back to school here. In the end middle of August, middle of August for my daughter goes back to college end of August for Benny and COVID and delta variant permitting. I'm really hoping to get back to some in person activity on the local level on the national level. So fingers crossed, we shall see. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'll be back in a couple of days with in the news. Join me for the top stories in the diabetes community. Until then, be kind to yourself.

 

Benny  28:00

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jul 23, 2021
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

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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.

https://www.biospace.com/article/releases/im-therapeutics-reports-positive-results-in-safety-tolerability-and-mechanism-of-action-of-phase-1b-trial-of-lead-drug-imt-002-in-type-1-diabetes/

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.

https://www.healio.com/news/endocrinology/20210714/more-youths-with-type-1-diabetes-meet-timeinrange-goal-with-hybrid-closedloop-system

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

Jul 20, 2021

Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump.

Stacey talks to Jack and his son Jamie. You can watch the video that brought them to our attention here.

In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Previous episodes with people who've lived with type 1 for more than 50 years:

Marty Drilling

Jeanne Martin

Richard Vaughn

Judith Ball

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 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 Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news.

 

Jack Tierney  0:38

And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960

 

Stacey Simms  1:00

Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump

in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. 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. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast.

I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com.

If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription.

If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment.

But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very 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 daario.com forward slash diabetes dash connections.

Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video,

 

Jamie Tierney  4:19

my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went.

 

Stacey Simms  5:06

All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away,

 

Jack Tierney  5:16

right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven.

 

Stacey Simms  9:10

It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No,

 

Jack Tierney  9:47

you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years.

 

Stacey Simms  10:50

How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing?

 

Right back to Jack 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. 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 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 gvoke glucagon.com slash risk.

Now back to Jack answering my question about how he stayed healthy.

 

Jack Tierney  12:06

Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to

 

Stacey Simms  13:37

let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing?

 

Jamie Tierney  13:50

Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around.

 

Stacey Simms  14:25

Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan?

 

Jamie Tierney  14:42

Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly,

 

Stacey Simms  15:36

Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind?

 

Jack Tierney  15:58

No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots.

 

Stacey Simms  17:11

Now, what led you to do this? It was was it a conversation with your endocrinologist?

 

Jack Tierney  17:16

Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well,

 

Stacey Simms  17:56

I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while?

 

Jack Tierney  18:16

Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to

 

Stacey Simms  19:58

Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's

 

Jack Tierney  20:20

so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those tapes, that study I think, yeah, it was called the DCC, diabetic comm closed stations control trials dcct. And that thing, that thing, I was concluded early, because it showed how important it was. And I think as a result of that the a one C was developed, and also kilmallock. Because before that I was using NPH, insulin from 1961 until the latter part of the 1990s when human log became available, and also, I got my first day one see back in the 1990s. Well, because that wasn't available. Until you know after that monumental study, the dcct. That's when the a one c came about, I believe. And also more synthetic insulins like human lock, right. And that helped me a lot getting on unilock it really good. But I didn't get on that till about I think 1998 1999 thanks to Dr. McCallum

 

Stacey Simms  22:13

What does he say to you? It's must be really interesting for him to talk to someone. I mean, my guess is that you educate him about many, many things as well. I'm curious. It just sounds like he's really open minded and really a team player with you to to encourage someone who has you know, not but on an insulin pump has lived with type one for more than 60 years. And then to make that change. Do you feel like maybe you're educating him as well? Oh, yeah, I

 

Jack Tierney  22:41

think it's mutual. Definitely. In fact, what happened was, Jamie said to me in mid March, he said, Dad, I'd like to interview Dr. McCallum. We've done the eight tapes. But like Jamie just said previously, I'd like to interview Dr. McCallum. So I called me and Jamie had to come down here on another job to San Diego from LA. And he wanted to do it on a Friday afternoon. Well, I called Dr. McCallum and he said, You know, I can't do as it's just chaotic once you guys come in Saturday morning, I couldn't believe he invited us in Saturday morning. We were the only one over there. And so I said to him, Well, can I sit in and listen, because Jamie interviewed him for an hour and a half. And I resist taking in his responses to all the questions, because you know, a lot of what he presented I had not heard before. And so it was just a very good education on my part to hear his responses to Jamie's questions. And also all along. He's been very respectful of my what I've learned. I'll give you one good example. And this is good to know, for every type one diabetic, sure, you got to pay attention to your endocrinologist, but also, you've got to pay attention to your experience. I remember when I first got on insulin back in the early 1960s that I was obsessive compulsive about making sure it was refrigerated. I mean, I was Oh, CD on it. I really was well, I'm reading a Life magazine. And this had to be in like 1963 about a gentleman by the name of Franklin, Billy Talbert. And Billy Calvert was one of the greatest tennis players ever. He was diagnosed in 1929. He lived to be 80 years old. In fact, that's one reason why I made the tapes. I said, Well, Billy made it to 80. Maybe my time is coming up. So I better do something that I've been contemplating doing for a while. But in that article back in the 60s, this is what Billy said, I'm playing tennis all over the world. I can't keep my insulin refrigerated all the time. And so I wasn't as I can, you know, you kind of learn by experience what you can do in the like, I mean, sure you take the advice of all of your doctors. But after that I wasn't obsessive compulsive about keeping my insulin refrigerated when I learned what Billy tailrace experience was. And that's what I found with Dr. McCallum he really paid attention to my experiences with this chronic illness. That's great.

 

Stacey Simms  25:28

Jamie, let me ask you, you know, you are a filmmaker, what do you hope happens with this video, I could ask you why you made it. I kind of have, you know, there's so many reasons why you would do something like this. But I'm curious to know, why did you do it?

 

Jamie Tierney  25:41

Well, I mean, my dad asked me to maybe not make exactly a film like this. But I just think it's an interesting story. I mean, when I when I got into it, I mean, the thing that kind of hit me the first thing that he survived for almost two years without insulin, yeah, I don't know how that happened, to be honest. And, and I tried to do some research. And I did ask the doctor, how many people have ever made it for that long, I don't think there's too many have forgot about it. He's my dad, but just from a human interest perspective, that someone could survive like that on a small amount of calories and no insulin with basically the pancreas not producing any more insulin at all. So that I feel like it's, it's pretty interesting, just the triumph of the human spirit, I think, and then having lived for, you know, 16 more years after that episode. And but then also, what's interesting to me is just how he's gone through every single phase of treatment. I know the first two treatments were began in the 20s. But it sounds to me like in the 60s, when he first started, it was basically a similar treatment to the 20. So it's pretty much gone through every single medical advance. And I just wonder, again, how many people are out there who are 81, who are getting started on something technologically advanced, like this pump and take into it? I feel like there's an interesting story there, too. I don't know how many people are are in his in his boat with that, too. Yeah. Can I piggyback a little bit? I'm going to tell you something. I haven't told too many people. As we said earlier, Jamie did fill eight scripts. Well, everything led to script number eight. And in script number eight, what happened was from 1992 to 1995, I was asked to be superintendent of the schools in a school district, that was the worst in the state out of 1000. And when that three year period finished, I believe, and maybe I don't think I'm off on this. It became the best school district in the state. And Jamie was getting his master's degree at USC, and screenwriting. And he said to me, dad, someday you have to tell this story. And I thought that was commendable on his part. In fact, he bought me a recorder. And so for a whole year, whenever I was driving, in my new assignment anywhere, which involved a lot of teacher training, I would record my thoughts. And when I finished, I recorded 55 hours of material. And I vowed to write three books. And I have written those three books on my experience there. And that is my ultimate reason for doing these tapes with Jamie helping me because I want to get a little bit of personal notoriety out there in hopes that a reputable publisher will publish my three books, because I think I've got a story. In fact, I told my wife and I just finished watching Downton Abbey because many of our friends thought it was so good. Well, I said to myself, after I watched Downton Abbey, my three books are an American Downton happy because it's a story that in fact, when I was contemplating doing when I started writing the three books of fellow Superintendent friend of mine said, Jack Tierney, he said, You beat me to it. When I retired, I was going to write a Michener light novel titled School District, because what really goes on behind the scenes in a school district has never been taught and what goes on in a border town. The story of what really goes on a border town has not really been told yet. And that is my ultimate person, poor person. I want these books, hopefully a reputable publisher rather than my working on self publishing, and maybe even three movies be made because I think it has the potential for that. And every month cent made will go to be find a cure for type 1 diabetes.

 

Stacey Simms  29:57

That's great. Well as we start to wrap this up, I'm curious to ask we on this podcast hear from a lot of adults who have been diagnosed with type one, I mean, sure, there's a lot of children as well, this audience is really half and half. And I'm curious, what would you say? What would you say to somebody you know, who was 60? Or 50? You know, who's not six years old? What would you talk about or tell somebody who's diagnosed as an adult?

 

Jack Tierney  30:21

Well, I probably would say the same thing. That I would say to someone who's diagnosed that like those four young men that I saw, for SAT prep, one of them was diagnosed at age three, the other two were re diagnosed at age seven. And then Brandon, who I mentioned earlier, nine, they have the ability and the courage to take this head on, you know, it is a chronic ailment, but with taking the advice of your endocrinologist and working at it, it is indeed manageable. I'll tell you what one one of the four young men told me when I met him for the first time, we finished the session on SAT prep. And I knew in advance that he was a type one diabetic, he actually had been diagnosed when he was seven. And he was now 16. And I said to him, I said, Well, probably in your lifetime, there will be a cure. And you know what he said to me? You're not going to believe what he said, Stacey, what did he say? He said, I wouldn't take it, huh? Because he had learned how to do it. And he had met this challenge. In fact, when he said that to me, I said, Jamie knows I've said this a lot. I think a lot of young people today, we don't have fixed rites of passage and societies too much anymore, where you did something notable. And the whole community recognized you as a aspiring adult. So young people are picking their own ways to prove to themselves the world and their families that they can stand on their own two feet. So I think that's why that young man made because he had his rite of passage thrust upon him. And he felt that he had successively done it. And so he didn't want to take him away necessarily. Yeah. Anyhow, that's my degree in philosophy. Coming to the fore here on why he responded the way he did, I've heard my dad tell versions of the story, my whole life, but it's, it's nice to have something that you can condense into 11 minutes and hopefully that people can get a sense of him, but also just how you can thrive and have a great life amidst the challenge of this disease. And as he says that, you know, hopefully, this this treatment is, is great, but hopefully there is a there is a cure someday and stories like harrowing stories of what my dad went through it in something. The future,

 

Stacey Simms  33:04

Jackie, so playing golf.

 

Jack Tierney  33:05

Oh, yeah. All right. Oh, yeah. I don't play that well, but I love to play. And what's best of all, I love playing with Jamie and his sister. In fact, every time we play, they're a lot better than I am. And they always give me a good tip. And that helps me to play a tad bit better. One of my neatest experiences as a father. In fact, the three of us, three of us always played on Father's Day. We don't now because Emily's in Cape Cod as being a doctor and Jamie's MLA. But whenever we did, when they were in elementary school in high school, it was one of my fondest memories on Father's Day.

 

Stacey Simms  33:51

Well, thank you so much for sharing your story. Jamie and Jack, I really I can't thank you both.

 

Jack Tierney  33:57

Give your best to your son, your 16 year old now. Just neat. He's doing so well. And what a champion he is.

 

Stacey Simms  34:06

Thank you very much. That means so much. And I appreciate you both coming on to share your story. And you know, we can learn so much from it. So thanks, guys. I really appreciate it.

 

You're listening to Diabetes Connections with Stacey Simms. More information about Jack and Jamie at Diabetes connections.com including the video with lots and lots of photos, Family Photos, if you'd like to take a look at that. I really appreciate them coming on. So much fun to hear that story and really reflect back and I love that you started using an insulin pump. Just last year, I have a friend who was diagnosed with type one in her late 60s and immediately went out and got the technology she wanted. A CGM right away hasn't started using an insulin pump yet she may never and that's okay but just knowing that the option is there. I think it doesn't matter what age, right? It's all about finding what works for you.

And if you're interested in learning more about people who have lived a long time with type one, like I said, at the very beginning of the show, I've talked to several people who've lived, you know, 60, or even 75 years with type one, Richard Vaughn comes to mind. But there are a couple of other people who've been on the show before. And I'll try to link that up in the show notes as well and kind of make a little list if you'd like to go back if you're new to the show, and want to hear more from these incredible pioneers in our community, a little bit more about in person connections and things like that.

But first Diabetes Connections is brought to you by Dexcom. And you know, a couple of weeks ago, we were watching TV, and I got a Dexcom alert, Benny was upstairs in his room, we were downstairs. And for some reason, it kind of took my brain back to the days when we basically had blood sugar checks on a timer, we would check during the finger stick the same times every day at home and at school, you know, whatever extra we needed to as well. 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 show to get up and check on him. I knew what was going on, I could decide whether I wanted to text him or you know, go upstairs and help him out. Using 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. And 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 you know, their individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes connections.com and click on the Dexcom logo.

So tell me something good is usually where I share your good news. And hey, send me your stuff, Stacey at Diabetes, Connections calm or I'll post in the Facebook group Diabetes Connections va group, I'd love to hear the good things that are going on for you, you know, this summer, and as we head into August, let me know what's going on. But for me, the Tell me something good this month was friends for life. I didn't even realize how much I needed that until I was there. If you're not familiar, and I know many of you are joining me because you met me at that conference. But if you're not familiar, it is the largest diabetes conference in the country. This year, they made a joke. It's the largest one on the planet because it's like one of the only ones happening on earth this year. Usually it's almost 3000 people meeting up in Walt Disney World at the convention center there. It's gosh, it's so hot in Orlando in July, but it's always so worth it this year. I think it was about a third I want to say maybe 1000 people were there was a smaller event. But it was still fantastic speakers education a chance to meet the industry people touch insulin pumps, talk to vendors, things like that. There's a lot of stuff happening. And for the kids, you know, it's a chance to see and and adults too, it's a chance to see lots of other people wearing the technology that many feel self conscious about. And usually by the end of the week, and I met a family like this a shy seven year old who didn't want to meet anybody and was almost hiding in her hotel room was jumping in the pool by the end of the conference showing off her Dexcom and her insulin pump. So it's about empowering people with diabetes. It's about educating families. It's about support.

As I mentioned, last time, we had an episode I was gonna say last week, but it was two weeks ago. I mentioned a new presentation that I was doing reframe your diabetes parent brain. I thought that went really well. I was really thrilled with the crowd. really terrific people. And they did the presentation. I was always afraid of people gonna play along and give me their examples that everybody was great. So if you are interested, I'll do this on zoom. I'll come to your group. Welcome to your parent meetup. It doesn't have to be anything formal. It's really just about taking the terrible things we say to ourselves. I'm failing my child. I'm the worst Mom, I'm not doing as well as everybody else. How could I possibly have forgotten the blah blah blah. And reframing those thoughts to help us not only feel better, this isn't like a woowoo thing although there's nothing wrong with with changing the way you feel. But this is really actionable stuff about seeing how you are actually living so well with diabetes and you're doing a great job and your child is thriving right under your nose when sometimes you think everything is going wrong. So that was really fun. Sometimes it friends for life or new at the at a conference a couple weeks ago. Sometimes there's big announcements about new technology or you know, people will do presentations and show the new stuff. There really isn't anything like that this year. There's a lot of delays because of COVID. As you know, if you listen you know we are waiting for Omnipod five with Horizon, we are waiting for tandems boltless by phone, we are waiting for Dexcom to be submitted to submit g seven to the FDA. So there's a lot of things we're waiting on. But the community is always there. And I really really needed to see those other moms to hang out with everybody and just to breathe that air again. So thank you so much for everybody who came who said Hi, and who's listening. Now.

We also had a really, really great meetup in the Charlotte area and I only share this because you can do this where you live, even if you don't know anybody with diabetes, reach out to your local jdrf or post in some of these Facebook groups post in the Diabetes Connections group you never know maybe there's somebody who's local to you and start talking about let's get together. We had a fantastic meetup. It was parents and kids, and it was adults with type one. Our chapter has really gotten on the ball with adults, they have a whole volunteer outreach now for them. And you know, it's so cool to see people of all ages living well with diabetes, and we all help each other right? So I share that not just to say, isn't my chapter great, which it is shout out to my fabulous friend and Sutton, who makes that chapter home. But also just to spur you on to think about meetups in your own area. They're hard to organize, I do them too. And it's sometimes 20 people come sometimes two people come, but it is really worth it to keep putting it out there and keep trying to find parents, kids, adults in your area, we need our diabetes community, you only see your doctor for teeny weeny amounts of time, every couple of months. Diabetes is 24 seven. So reach out, find people post in the Diabetes Connections Facebook group, if you have questions, we can help you I do a whole presentation on making connections. So I can definitely give you tips and tricks, especially as we get closer to school starting about how to find other families in your area.

All right before I let you go, if you have listened for this long as you are listening to this episode, if you listen as it goes live, Benny knock on wood should be coming home from Israel today. As I am taping, it's still a couple of days away. But it will have been a month and I should be picking him up at the airport as this episode is airing. I am hoping that after he sleeps and showers, or sleeps for a couple of days, that he will do a debriefing on the show and talk to me about what it was like not just going to Israel with camp for a month. But what it was like doing all the diabetes stuff completely on his own. At this point. I don't really know a lot. I've seen his numbers. And I think I know what's going on. But I really want to hear it from him. So couple of days left, I can do it. Keep breathing. Oh my gosh, this has been so stressful. And I will share more with you all warts and all. I'll share the honest story, but not until he's back and home safe. All right.

Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening in the news every Wednesday live on Facebook at 430. And then we turn that around into a Friday podcast episode. Do not miss out in the news is like six or seven minutes. It's real quick. I'm trying to get it to five minutes, but I can't get it to five minutes. It's only six or seven minutes long. There's just so much good stuff happening and news to bring you from the diabetes community. So join me every Wednesday live for that or listen for the episode here. I will see you back here in just a couple of days. Until then be kind to yourself.

 

Benny  42:51

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jul 16, 2021

It's In the News - the only weekly diabetes newscast! This week's headlines include:

Lawsuit against insulin makers moves ahead
Mixed news for Teplizumab
Peep the pump at Pixar
Antacids to help type 2?
#T1D up K2

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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.

https://news.bloomberglaw.com/pharma-and-life-sciences/sanofi-novo-insulin-price-suit-advances-with-trimmed-claims

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.

https://www.biospace.com/article/lilly-buys-protomer-for-1-billion-plus-for-next-generation-insulin-products/

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://www.fiercebiotech.com/biotech/provention-bio-slapped-fda-rejection-for-diabetes-hopeful-teplizumab

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

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More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

  • Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from accidental discoveries to famous names in science to old myths hand washing to and even a horse poop crisis in New York City – luckily averted. And this all actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..

Back to the news…

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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

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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!

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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

Jul 12, 2021

The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult.

Also this week, Mike Suarez turned his son’s story into an adorable picture book called Year One with Type One

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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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 pre mixed autoinjector 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, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult.

Robin Benway 0:43
Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect.

Stacey Simms 0:54
Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one.
in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. 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 so glad to have you along. I'm 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, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years,
and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there.
All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It 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 there. 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 comm and click on the One Drop logo.
My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway.
Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s?

Robin Benway 5:28
Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out?

Stacey Simms 7:36
Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that?

Robin Benway 7:44
I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So

Stacey Simms 8:50
the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah.

Robin Benway 9:29
You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt.

Stacey Simms 10:53
Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in

Robin Benway 11:09
that dress. You know? It's expensive. You just really don't want to get anything on this.

Stacey Simms 11:15
So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to.

Robin Benway 11:32
Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it.

Stacey Simms 13:29
Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the

Robin Benway 13:42
time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah.

Stacey Simms 14:54
How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction?

Robin Benway 15:09
I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did

Stacey Simms 16:45
a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it. But I thought was going to throw this word up. I really thought it was masterfully done. Yes, she learned more about her. And yes, there was a there was a lesson there. And, you know, I know there's a lot of criticism from people who get uncomfortable with those kinds of issues, but I thought it was so well done. And they did it many, many times over. And my 18 year old who's really conscious of those things right now, I was really impressed. I thought it was really well done. But I was very worried about the truth about Stacey, I was like, Oh, no, because we see this happen so many times in media, and I think they got a couple of things that adults would notice kind of wrong. Boy, did they hit it out of the park, in terms of what younger people would see.

Robin Benway 17:41
What did you see in Stacey, what I see in myself. Here's a girl who has many, many things. But one of those things is diabetic. It is not the arc of her life is not the big picture of who she is. It's one thing and there's a scene where she goes to babysit and her blood sugar feels a little bit low and she pulls out a juice box and I realized that I had never seen that in media before. You know, I hadn't seen this girl or any girl or any woman just do that she feels better she keeps going. I mean, I have had literally hundreds of juice boxes on the road working, traveling, you know, so many so many juice boxes go down in bathroom stalls and downstairs bathrooms and you know, just you do what you have to do that's important. And then your blood sugar's come back up and you move on. And I was shocked to how blown away I was by that because it's such a simple act, but it is such a big part of managing your blood sugar and managing diabetes.

Stacey Simms 18:35
Yeah. Didn't you expect her not to do that and faint or have to go home from a babysitting job? That's that's what I think we all expected her to do. It was such a nice normal. No, I'm fine.

Robin Benway 18:45
Yeah. And I also I did like there is a scene I think at the end where it's sort of like a neighborhood meeting with all the parents of the kids that they watch and though the girls are explaining what it what this means for Stacey and how this works, and I liked that they introduced the doubt of the parents. Because I think that's, it's the pushback that you get like, are you okay? Can you handle this? You know, there's this feeling of, are you just gonna collapse at any moment? Are you safe and I like that they were like, this is how we this is how Stacey manages that this is how she handles it like these are factors in her daily life, but she's also smart enough and mature enough and knowledgeable enough to take care of herself. And I thought that that was a really good message as well to see that some people may not understand it. And here we are explaining to you what this is. Really, if we had had that exact discussion, not as a group of parents, because we aren't lucky enough to have a Baby-Sitters Club in my neighborhood.

Stacey Simms 19:37
One of our babysitter's when my children were younger, has type one. And when Lauren would come over we the first couple times we talked about, well, what would happen if you had a low blood sugar and what would happen if this happens, and we talked about all of that, and it was funny, I saw a few adults in the community commenting on the show, and they that would never happen. parents wouldn't talk about it that way. And then they also and I said yes, well, I'm sorry, but we did. Mother's overreaction, right? No mother would overreact like that. I was like, Hello, I mice my son's very first low blood sugar when it was a bad enough low sugar that we had to treat with more than just a juice box. We were about three weeks in, I called my endocrinologist convinced he was gonna send us to the ER, Mm hmm. Right? Okay, we treated it. His blood sugar's coming up. What do we do now? They were like, What do you mean? But I thought we were gonna go in for tests or something. So that kind of confusion really made me laugh, because in the show, she actually did wind up going to the hospital for the day. But in our experience, I mean, I did call I can't say that I didn't. So it was pretty funny to see our real life reflected in that way. I did also like the mom turn around by the end, but it was more as we mentioned earlier, it was more about Stacey and less about the other character. She turned it around.

Robin Benway 20:52
Well, going back to the mom, you know, I was diagnosed at 26 I know how much my mom still worries about me to this day like she would never Say that you're stupid ever say it explicitly. And I'm sure the way you worry about your children and your son, you know, there's just always going to be the worry. I think that's also very much based on who Stacey's mom and her parents were in the books as well. They were very anxious about her disease. And I think that was really important to see that, you know, Stacey is managing many different facets of this disease, including what is other people's reaction to it, including, what is her? What are her parents reactions to her? And it and I like that they were able to have that conversation and the confusion between this is who I am versus this is how you're making me feel. I mean, I think those are things that every young person feels even if they're not dealing with a chronic disease or not diabetic, how are you reacting to me versus how I want you to react to me, so I thought they did a really good job with that, but it's just tricky because every person you meet is going to react completely differently to your diagnosis and regardless of how you react to it. And so that's another thing that you're always navigating is, I mean, I'm sure your son has heard this. I'm sure every diabetic has heard this, but we Hear the Oh yeah, my uncle had it. He lost a leg or he now he's blind. You know, everybody write tragic stories and you have to sort of put up a barrier and remind yourself okay, well, that's not me that is your uncle or your dad or whoever. So I think that was for me as I bet seeing Stacey navigate the reactions of other people I thought was really important as well because that is a big part of it.

Stacey Simms 22:22
Robin Well, I have you and as you listen, Robin is a National Book Award winner New York Times bestselling author, six novels for young adults. I want to ask you, Robin, why is it so hard to write genuinely for young people?

Robin Benway 22:38
I think for me, you know, six books in now at this point is empathy. It's the very first thing that it has to be the biggest part of every book is empathy. I think it's very easy to like see young people today and be like you kids with your tic tac toe and your snip snap, you know, like they don't, you know, people it's very, very easy to look at what is this? What are we in now, generally See, I guess and look at them and think, well, in my day, we had this and not that we weren't on our phones all day. I mean, I'm on my phone all day. I'm a 43 year old woman. So I don't you know, I'm not gonna judge a 15 year old for being on their phone all day. But I think for me, the biggest thing is empathy, because nothing really changes, right? Like we're all still figuring out how to get along with our friends. Who do we want to be? How do we get along with our parents? How do we move through the world? You know, I as you get older, you hope you get wiser you hope you have more experience that makes you grow mentally, you hope that you maybe have a little bit more agency and a little bit more ability to vocalize how you feel and how to stand up for yourself but the struggles are still the same. You know, the way you get along with your teachers the kind of the same way we all get along with a boss or sometimes in a classroom, you have to be with people you don't really want to be with same as in an office space. You know, sometimes you have co workers. So I think the feelings are always the same. The technology doesn't matter. The place doesn't really matter for me. It's just The feelings whether it's love or family or friendships,

Stacey Simms 24:03
have you ever considered putting type one into one of your books? Yes,

Robin Benway 24:08
I have. I've definitely over the years, I've had conversations with different editors or people in publishing. And they've said, like, hey, you're diabetic, would you ever think about writing a book about diabetes? I think the thing is for me, and this is something that I've really, really, it's why I don't speak publicly about being a diabetic so much is that I don't want it to become the only thing that people think of when they think of me again, I'm not ashamed of it, I'm very open with it. But at the same time, you don't want to just become Oh, that's Robin, she's the diabetic, you know, we we are all more than just one thing. And so I know that if I do a book about being a diabetic or a character who has diabetes, I will have to talk about that book for years, you know, hopefully, you know, one to two years. You know, it will become the defining part of every interview that I do every, you know, work conversation that I have, and Worry sometimes that it will dilute down to just me being the diabetic when I like I said I am so many other things as are pretty much every other diabetic out there we are more than just that disease. And so I do think about it. Also for me fiction is such a wonderful escape. I don't write books because I have to I write because I love writing books, especially for young people. And I think that for me, I love that escapism of it. I love that I am not having to figure out a character's blood sugar situation. I'm already I've got enough doing that for myself. So I don't know I think about it. Maybe as the years go by, maybe in a few years, I'll engage it. There would have to be a really good idea. It wouldn't just be Oh, this character has been diagnosed with diabetes, there would have to be more at play for me so. So I think about it, never say never, but if someone else wants to do it, go for it.

Stacey Simms 25:52
You know, it's funny, I don't want to put too fine a point on it. But the first part of your answer there, which is you didn't want to be defined by Diabetes Connections. What Stacey's story is all about to Yes. And I think that's why we like it so much, because that's how almost everybody I know with any kind of diabetes feels. Yeah, right. Agreed. I think anybody with anything

Robin Benway 26:11
like that, you know, it's very easy, especially in sort of these wild modern times to focus on maybe what is unknown or scary or, you know, baby, if people don't understand it, that's what they kind of go to first. But that's just not how I view and that's not how I view being diabetic. It's just so it's just a thread that's woven into my life, you know, I, it will always be there. It's something I will always manage. But it's so inherent to me. I don't want someone just to pull that thread out and only look at that rather than the bigger picture.

Stacey Simms 26:41
Is there any depiction of type one in media that just makes you mad? Like, can you think of something where you're like, Oh, I hate that one. When people refer to that one,

Robin Benway 26:48
I can definitely think of one thing but I can't say

Robin Benway 26:52
but I it was fairly recent and yeah, it just I for me, it was sort of like that thing where you're just like, Are you serious? Like, is this really like, this is what you had to do, and this is what you did with it. And it just it was petty on my part. And, you know, mean, and I can't say it, but I got so frustrated and so annoyed. And, you know, I think that was a long simmering feeling that once I got to the depiction of Stacey, I think those two feelings just sort of combined and became an article which was I can't believe I just had to read this versus Oh, I can't believe I just saw this, you know, and that the negative and the positive of that sort of combined together, but yes,

Stacey Simms 27:32
definitely. And then Baby-Sitters Club has got to have a season two, you know, is there anything that you remember reading that you really liked them to see? And it doesn't have to be about Stacey, oh gosh,

Robin Benway 27:42
I really want to see Don's mom and Mary's dad get together. I know they were together in the first season but I if memory serves, they get married. So I really want to see that wedding. Just because I love Dawn's mom both in the book and on the show and I love the way that they've treated Maryam dad is fun. This is kind of sad, but in the opening scene. Louis, the Collie, you know, appears with Christie. It's Christie's dog Louie Who's that Collie dog. And I was like, Oh, no, Louis because I don't. If memory serves things get a little dicey. Oh, no.

Stacey Simms 28:11
Sorry. Spoiler

Robin Benway 28:13
alert. I really, I when I saw Louis, I was like, Louis, you know,

Stacey Simms 28:19
it is amazingly six with us from what we read in our childhood, right.

Robin Benway 28:24
Well, I was talking with a friend of mine about this. You don't realize how much you buried in your brain. You know, I'm watching the show. And I'm like, oh my god. It's Louis. Oh my gosh, it's more been a destiny. I forgot about a bit of destiny. And just Charlotte Johansen, Jamie Newton and his sister Lucy and I'm like, how do I remember all of this? And yet I'm like, did I pay that bill? See now I'm

Stacey Simms 28:45
jealous. I want it I like sweet Valley High. backer revel in those memories.

Robin Benway 28:52
I'm sure it's developing somewhere.

Stacey Simms 28:54
I kind of hope not really cheesy. Can I ask you are you working on anything new right now I know authors always hate that. I know just finished and Oh, that was great. But what's that?

Robin Benway 29:07
I always say it takes a brave person to ask a writer somebody working on because oh tread carefully. I am working on something. Yes, it has been a slow road. But the book has evolved many, many times. And I've sort of distilled down to what the book actually is. And I have started writing it. I feel really good about it. I started it a couple times, didn't feel good, went back to the drawing board ripped it all up again and started over. So I do feel good about it. Now it has taken me a long time to figure out what it's about. And I think at the same time, I was coming down off the success so far from the tree and the time that that took, which was wonderful, no complaints, but it was hard for me to both work on a new book and enjoy the success apart from the tree. So I am basically staying with family for a few months. I'm sort of quarantined away here and just everyday I sit down and write 1000 words and it's going well, it feels very, very good to be writing. Again, I haven't written for a while and I have missed it very much. That's fantastic. Well, I look forward to reading that. I'm so glad that I read the article. That was an L. Thank you so much for joining me to talk about this. It was a lot of fun. And I continue to learn more about the Baby-Sitters Club baby. Those books. Thanks so much for joining me. Thank you call me if you have any questions about the baby sitters.

Stacey Simms 30:17
You got it Robin.

Robin Benway 30:23
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 30:29
More information on Robin and her books on the episode homepage. I'm really appreciative that she jumped on with me and I definitely got to seek out her books now. It was funny to think about not just the Baby-Sitters Club books, which as I said, I was marginally familiar with as a kid I was a little too old. But the sweet Valley High books man, she made me want to see if my mother still has them. I bet she does. I guarantee you they do not hold up for where they are relic of their time. Right The 80s if you're familiar with sweet Valley High I know you know what I'm talking about. If you are not I will not suggest Due to any more of an explanation, all right, in just a moment, I will be talking to a different kind of book altogether a different kind of author, a dad who wrote a book about his son's diagnosis to help other kids and families.
But first Hey welcome to our newest sponsor Diabetes Connections is brought to you by Gvoke HypoPen you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. have very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it is easy to use. How easy is it, you pull off the red cap, you push the yellow end under bare skin and you 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 Jeeva glucagon comm slash risk

If you have a child diagnosed very young with Type One Diabetes, chances are you have a favorite book about diabetes that you read together. We were so lucky to have a couple of these Rufus comes home was one from JDRF. There was another one that I've mentioned before called Jackie's got game that we absolutely adored. There are a lot of wonderful books now for kids with type one. And this week, I am talking to one of the authors of these books. And that is Mike's for as he wrote year one with type one, four and featuring his son, Andrew, it's all about their diagnosis story and also a bit of a teaching tool. Here's my conversation with Mike.
Mike, thanks so much for joining me. It's great to talk to you.

Mike Suarez 32:43
Hi, Stacey. Thanks for having me on.

Stacey Simms 32:45
One of the things I loved doing when my son was diagnosed was finding books that we could read together. And you know, My son was tiny, he wasn't yet too. And so when you have a picture book like this, it's really a nice opportunity to go through it with the kids. So I just want to let you know that They really appreciate what you've done here. I think it's great.

Mike Suarez 33:02
Yeah, thanks for saying that. You know, it's kind of the same experience I had, you know, I went to Amazon when he first got diagnosed, and I was looking for books myself, and I found some pretty good ones out there. But I was, you know, really looking for one that really kind of resonated and something that I could share with my own family members and friends to really kind of drive home what it is that he goes through and what it's all about.

Stacey Simms 33:23
Well, it's been a couple of years now since Andrew was diagnosed, but why don't you take us through? Even though you're talking about it in the book, why don't you take us through his diagnosis story? Had you all had any experience with type one Had you ever given an injection before and this,

Mike Suarez 33:36
so I was unfamiliar entirely with Type One Diabetes. My wife was more aware of it because she had friends growing up and in college that had type one diabetes, and she was around people that have given themselves insulin injections. And for me, I was just totally unaware of this condition. I was totally aware of of the treatment for it. The only thing I knew of diabetes was unfortunately, just That joke that people like to tell around how if you eat too much candy, you get diabetes. And that's basically all I knew of diabetes, which obviously isn't true or isn't fair and especially isn't isn't true of type one diabetes. So I learned a ton, just in that that first few days in the hospital,

Stacey Simms 34:15
when did it occur to you that with everything else that's going on, it would be a good idea to write a book.

Mike Suarez 34:21
So it was probably a couple months shy of his first year with it. I don't know how the idea popped into my head. I was taking the train in and out of Boston every day for work. And I think just a few lines kind of popped into my head. So I took out my iPhone and just wrote him in my notes app. And I think part of it too, was that my wife and I were talking about bringing a book into school, to read to his classmates, know what it is that he has and goes through and know why it is that he has to leave and see the nurse and why it is he gets, you know, Skittles every once in a while and he's in class. And, you know, going through the books out there, you know, again, there were good ones, but I was just looking for the right one that told the story I wanted to tell his classmates in the way that I wanted to, you know, I've seen that a lot of the other books out there are actually self published. So I knew that the opportunity to do this was out there, you just had to kind of sit down and figure it out. So I utilize my train time in and out of Boston to kind of write and refine my lines and kind of do a little bit of research to figure out what the process was all about

Stacey Simms 35:26
was the idea for you to write it for kids to read or for parents to read. I mean, it's the kind of book right, it's in rhyme. But there's some concepts in there that are going to be above a four year olds head.

Mike Suarez 35:38
Right. I think what I wanted, most of all, well, I guess there were a few goals. There were a few readers I had in mind. One was the newly diagnosed I wanted for newly diagnosed children to be able to read this and be able to relate to Andrews story and be comforted to know that you're not alone in this that there's other people that have been through Through this and have dealt with it. So that was maybe my primary audience secondary to that would be kind of the friends and family of somebody who is newly diagnosed, including my own friends and family so that they can get an appreciation for what it is and kind of understand what it is that their, you know, diabetic friend or family member goes through. But I guess, you know, I was just thinking about when I read to my own kids, you know, a lot of time it's me reading to them, not them. I guess as they get older, it's more of them reading to themselves, but it's mostly me reading to them. So I can, you know, kind of pronounce the big words, but also the books that we tend to enjoy the most, or that I enjoy reading the most and they seem to be the most receptive to are the ones that rhyme. So I did want to have that kind of make it accessible for kids not make it kind of a chore to read. And that's something that I none of the other books that I saw did was was kind of right in verse so I wanted to have that aspect of it to be accessible. Similarly with the pictures and the drums I wanted them to be kind of, you know, light hearted in a way as much as it's a serious subject matter, but to make it accessible for kids to understand,

Stacey Simms 37:08
the book tells the story of you know, your family's journey, and then educating people about the basics of type 1 diabetes. But at the very end, your son has signed it and say, thank you. How did that piece come about?

Mike Suarez 37:23
One thing I haven't mentioned yet is I actually did this whole thing in secret, because I did it on my train rides, and nobody was watching me and then at night, I would, you know, once everybody wants it bad, I'd maybe work on it a little bit more. And this includes the whole process, finding the illustrations, kind of framing it for them, getting beta readers to help sharpen up the the rhyme and all that sort of thing. And I wanted this kind of personal touch because I wanted people to read it and realize that this wasn't a fictional character that this is a real boy. There was maybe the same day that I asked Andrew to write up a birthday card for a birthday party he was going to I just took out another piece of paper and just asked them to write on it. Thank you for reading love Andrew. And he asked me What's this for? And I just was like, I don't worry about it. Like I didn't really, I just asked him to do it. Then I put it all together. And then I when it was finally done, I got to read it to my family for the first time, you know, naturally they all loved it. But I think it was I read it first to my wife and son while my daughter was napping, because I didn't, I kind of wanted to, you know, have their full attention. But after she woke up, Andrew took the book, and he showed it to her. And he flipped immediately to that page that had his writing on it, and was like, so proud of having that contribution to the book. That was the first thing he showed his little sister. That's great.

Stacey Simms 38:41
There's a page of the book that, you know, has him coming home and has gifts and things with a lot of beams on tags. Are those friends and family names.

Mike Suarez 38:51
Yep, they were basically you know, the people that probably were the first to find out and you know, felt, you know, really bad and came to us with, with just some gifts for Andrew, including our next door neighbors and their kids, my sister and her husband and their kids, basically, you know, aunts, uncles, siblings, it just so happened that some of the names rhymed. So if you read them in order, even though the name tags kind of, you know, rhyme together, when I recognized that I was like, you know, I should put them all in there and kind of, you know, thank, you know, some of the people that were, you know, part of this journey and a part of kind of coping with all of this.

Stacey Simms 39:31
Yeah, I think it's really well done. The one thing I would say is, there's this little bit about no sneaking snacks. We count carbs to know what goes into my body, but no sneaking snacks. That's beyond being naughty. Yeah, I'm no psychologist, but I always felt like sneaking and and associating any bad behavior with diabetes was something that maybe it was something that we never did. Let's just write that way in my house. We always said you can't get in trouble for anything to do with diabetes, it just flies off the books. So that's the only thing that kind of made my eyebrows go up a little bit. But Gosh, Mike, I'm not really not a critic here. Sure, you know, and I think that's also a good illustration, no pun intended that we all parent in different ways. Yeah. Right. I mean, there's no one size fits all you got to put insulin in, you got to know where your blood sugar is. Yeah. But you know, the way you parent is probably not exactly the way I parent and that's fine. Right. So that I was just curious. And you know, you showed it to your endo. I think that's, again, with my book, I did the same thing, right. You know, you're not a medical professional, but you're showing it to the medical professionals and hoping that they will flag anything that comes up. I'm also curious to know, your daughter makes a couple of appearances in the book, and she's one of those names that we mentioned. Who is she doing and how do you balance the son who gets all this attention for type one and trust me, I have the same situation in my family, right. I have an older daughter who doesn't have type one. How do you handle that with her? How is she doing?

Mike Suarez 41:00
Yeah, I mean, she's just as used to it by now as as Andrew, you know, Andrew was four and a half, she was one and a half. So she has no memory, you know, whereas Andrew may may recall, he's he's a, he's got a pretty good memory for a kid his age, he may recall a time before all of this, she would have absolutely no memory. So this is all she's ever kind of grown up to now. So whereas if they were teenagers, then maybe if she was used to just, you know, snacking whenever she wanted, she would continue to do that, despite Andrews diagnosis, but because we're able to kind of be careful around that about that stuff from the outset. If it's not time for Andrew to eat, then we're not going to let her eat in front of him. But if we're you know, giving Andrew you know, something to bring his blood sugar up, if it's maybe a pack of Smarties or something like that, and we only need to give them eight of the 10 then maybe we'll give her the other two, but it is interesting to see how she internalizes as she gets older, how she responds to it, somewhat funny side note around it She sees Andrew take shots all the time and she doesn't get them herself. And sometimes she sees Andrew get shots and she like, asks or she at least at least did this. earlier on, she would say, where's Maggie shot? Where's Maggie shot? And we would explain No, Maggie doesn't need a shot. So I think it was last year when we took her to get a flu shot. She was all about getting her flu shot right. After she got it, she asked for another one. And she was like crying because not because she got the shot, but because she only got one, which was kind of backwards from what you'd expect a kid raised to do. And then another kind of similar story is there was one day where she closed like a dresser draw on her finger and her fingernail started bleeding and you would expect a kid her age to just start wailing. She actually picked up her finger and she was like check my blood sugar. Check my blood sugar.

Mike Suarez 42:51
You also wrote a Christmas story. Yep. Why did that come about? Tell me that story?

Mike Suarez 42:59
Yeah, sure. So When you're one with type one first came out, yeah, I created a Facebook page to kind of go along with it to give updates about Andrew and to kind of, you know, create some fun memes and things like that to kind of draw attention to it. And I created a kind of a spin on Twas the Night Before Christmas. And every once in a while, like a new couple lines would occur to me even after Christmas, and I would kind of go back and edit the post. And then at some point, I was like, you know, there's probably enough here and there's probably enough opportunity for reuse from my first book that, you know, I wouldn't even be that many more new illustrations. I could just turn this into another book, relatively inexpensively and you know, certainly justify the cost that goes into it. And so I said, Yeah, why not? So I just kind of thought through it and just kind of threw it together and I was really happy with the way it came out.

Stacey Simms 43:50
So Mike, we celebrate Hanukkah. I'm not sure how well versed I am in this classic poem, right? But it seems to me that all of the reindeer have Dexcom on I'm not sure I remember that from the original Am I looking at this right? Do they all have Dexcom

Mike Suarez 44:07
everybody everybody basically everybody in the story that the Dexcom the reindeer have all all of Dexcom on the Elf on the Shelf has one Santa has one basically everybody in the book and that's what I wanted to create was kind of a world where you know what, it's okay that everybody in the story has it.

Stacey Simms 44:25
All right, so what's next? Well, there'll be another issue of this are you gonna move on to the elementary school ages Andrew, you know, with seven now so it's a little different than when he was little?

Mike Suarez 44:35
Yeah, it's a good question. I'd certainly like to do you know, to continue Andrews story. I haven't really started anything yet. But I've got a few ideas floating around. I mean, I think one of the things I realized is that there's actually more children's books that are picture books than there are kind of chapter books. That's obviously a whole different ballgame. Then picture books, but my mother in law's actually she's an author. As well, and she's written lots of novels. So if I do decide to go down that road, it'll probably be a lot more work than I did for these other ones. But I certainly would have, you know, a mentor throughout the process. If I did go down that route.

Stacey Simms 45:13
It'd be great to have more books with a protagonist who lives with type one. And it's not about type one, if I could put a request in. Yeah, no, it would be really nice. There's a few books and I'll, as you listen, I'll link some of them up in the show notes. But there are a few books Besides, you know, the Baby-Sitters Club that feature Stacey who lives with type one, but it's a little outdated at this point. And the lily books, there are some I hesitate to call them novels. They're like novelizations for middle schoolers and stuff like that. It'd be great. There's only a couple of books I can think of that have a protagonist who lives with type one, but the book is really not about the diabetes.

Mike Suarez 45:47
Right. So yeah,

Stacey Simms 45:48
that's, I'll put my vote in for that.

Mike Suarez 45:50
Yeah, certainly. I think that's a great idea.

Stacey Simms 45:53
Well, Mike, I really appreciate you coming on. These books are so fun. I have a lot of great memories of reading the book that we liked. When he was little Jackie's got game was our favorite. I don't even know if they're still printing that one. But that was the one we loved. So I hope that people find this and love it, you know, kind of just like we did that stories. Thanks for coming on and sharing your story. Sure,

Mike Suarez 46:13
yeah. Thanks so much for having me.

Stacey Simms 46:14
You can find out more about Mike's book, just go to Diabetes connections.com and click on the episode homepage. This is in the show notes. Every episode has show notes on whatever app you're listening to. If you listen to podcast apps, they will display a little bit differently. I think Spotify is finally letting people click through. In other words, if there's a link in the show notes, you can get there through Spotify, but you can always go to the homepage at Diabetes connections.com. if things aren't showing up in your player and find out more there, tell me something good is up next. And boy, there have been so many changes this year with COVID and the JDRF bike rides not an exception, but there's some really good news about one particular writer and I'm going to share that
but first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom Clarity. It is their diabetes management software. For a long time, I just thought it was something our endo used, but you can use it on both the desktop or as an app on your phone. And it's an easy way to keep track of the big picture. I check it about once a week. It really helps me in many dial back and sees longer term trends and helps us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. And you can share the reports with your care team. We've done that all this year with the virtual appointments makes it so much easier and 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 at Diabetes connections.com and click on the Dexcom logo
a couple of years ago I met a local woman here in the Charlotte North Carolina area who lives with type 1 diabetes. Dana Cumberworth first impression that she made me was that this might be one of the fittest people I would ever meet and come to find out she is really Just an athlete, just one of these people who is always always moving and pushing and thriving with type one she bikes she runs she weight trains. Dana was diagnosed as a student. She was a first year student at Wake Forest and their physician's assistant program. And how she was diagnosed is pretty incredible because they were doing the endocrinology part of the class. And when her lab partner tested Dana's blood sugar, it came back at 700. So she was diagnosed in the class while she was diagnosed at the doctor's office the next morning. Fast forward. She has since done I believe, three Iron Man races and then she started getting involved with jdrf. And the bike rides this year was two been a very big deal for Dana because this is her 10 year diaversary. It was just last week actually that she marks 10 years with type one, and she was going to do several if not all of the rides this year. Oh my goodness.
But of course plans changed. Everything went virtual. So she and her husband and friends planned ahead To the beach to the east coast here of Charlotte, North Carolina, and do their own version of the ride there. This was supposed to happen this past week. But if you've been following the weather and the hurricane trackers, then you probably know that hurricane eecs was a big problem here in North Carolina. So instead of being able to complete this at the beach, in fact, with the way the podcasting time shifts here, she will have completed 100 miles in Charlotte with some friends and family. So that is absolutely amazing. She set a new goal she keeps surpassing her monetary goals. So her new goal set just a couple of days before that ride is $20,200 because as she said in one of the videos she makes 2020 has already been unbelievable. So why not push that goal? That way? She's not that far off. So 2020 $20,200 and oh, I have forgotten to mention that Dana and her husband announced a couple of weeks ago that she is pregnant, I believe at this point. She's about 1819 weeks along. Hi, I'm going to put some of her videos in the Facebook group because she's been talking about her journey this whole year. And I just think her story is amazing. I will link up some of the videos that she's been doing into the Facebook group at Diabetes Connections, the group, but yeah, hundred miles, type 1 diabetes pregnant. And when you look at her smile, it just looks like it's a piece of cake. She's so inspirational to me, especially to push on with everything that's happened this year and how this ride keeps getting changed and changed and changed. So congratulations, Dana. Continued Good luck and good health to you and your family. And we will cheer you on.
If you have something good going on. It doesn't have to be 100 miles of biking while you're pregnant. It can be you know, a diaversary milestone that makes you and your family happy or something that you really want to shout to the hills. Let me know you can email me Stacey at Diabetes Connections comm or post in the Facebook group Just tell me something good

At the top of the show, I said I was going to talk a little bit more about the Baby-Sitters Club, the TV show on Netflix. And I think that Robin and I covered it pretty well. But I just wanted to say a couple of more quick things about the actual depiction that I realized we didn't touch on in the interview. If you haven't seen it, or you've had I'm curious what you think the feedback I heard from my friends who have kids with type one who watched it was that I don't know anybody who didn't like it universally, very well received by their kids. They loved seeing a beautiful young woman who was accepting of her condition who told her mom, you know, I'm going to do it this way. Who asked for a fancy purse, she didn't get the fancy purse. But you know, she did this for that Gucci bag. And you know, other things like that, which made it seem very normal. You know, she was low during babysitting, she drank the juice box and went on her way. It didn't seem insurmountable and her friends, the kids, I don't think Robin and I talked about this. The other babysitters in the club, when they found out said Why does somebody with diabetes or you can still do such And so with that, right? Okay, no problem and they really just moved along. Like most kids do, it's the adults that have more of a problem,
the things I didn't like about it, they still got stuff wrong, which amazed me because I know that they had to be consulted with people who have type one for this, or at least I hope they did. But what they got wrong was the seizure. Did you see that she had a seizure before she was diagnosed, and they talked about it like she went into insulin shock. Now, I am not a medical expert. Perhaps that could happen. But it makes no sense to me that somebody who is not yet diagnosed with type one, so they are not taking any insulin could go into an insulin shock that would make them have a seizure. Right. It just seemed kind of a stretch. They wanted to do something that would make Stacey embarrassed to push the reason why they moved. It was just this whole I don't know to me that was a big turn off, but it was quick, and I get it it move the plot along.
The other thing was this weirdness where that one low blood sugar, which Stacey treated herself causes her mother to take her in for a day of tests. Now, having been a very Worried Mother, I'm still one, let's face it. But when I called my endocrinologist every single day of the first month that Ben he had type one, which I really did do, they never told me bring him in for tests because he had a low blood sugar. Right? I could see a parent calling. I could see a parent being alarmed. I couldn't see an endocrinologist going along with that. And given Stacey was talking about how she was in the hospital for a whole day taking tests. So that was also a little weird. Is it nitpicky? Yeah. But if you're going to tackle something like type one, it's really not that hard to get it right. So I hope they continue to follow Stacey and show her confidence and show we're doing lots of other things that have nothing to do with diabetes. There's definitely gonna be a season two of this show. It's a huge hit. That means there's a lot of room to get it right. So I stay optimistic. What did you think I'm really curious to hear what other people have to say about this as more people discover the series
before I let you go, I have something to ask of you and it is about podcast reviews. If you are still listening, I know you were a big fan. I would really appreciate it. If you haven't moment to go to whatever podcast player you're listening on and leave a review. Maybe you're listening on the website or through social media, but especially if you're on Apple podcasts, I'd really appreciate a review there. If you're not, you can head over to Apple podcasts easily find Diabetes Connections and hit subscribe. It's free to subscribe. no cost. It is free on any podcast player and we are everywhere you can get audio Spotify, Pandora, Apple, Google Android, if you're not sure, go to the website, Diabetes connections.com. Scroll down, and you will see 15 links of places to subscribe to the podcast. And you just you can pick one, chances are good, the app is already on your phone and subscribe for free and leave review. I'd really appreciate it. All right, thank you to my editor john Kenneth 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 55:01
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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Jul 6, 2021

What do we know about the upcoming Dexcom G7? Find out in this conversation with company CEO Kevin Sayer. As usual we have a long list of questions from you covering everything from adhesives to watches to more. Sayer shares details about how they’re preparing for the G7 rollout (it has not yet been submitted to the FDA), as well as issues with Medicare, integration with their current pump partners and when arms will become an approved wear site for US customers.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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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 autoinjector for very low blood sugar, and by Dexcom: help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.

Announcer 0:23
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:29
This week, a Dexcom update from the company's CEO. As usual, we have a long list of questions from you, covering everything from adhesives to watches to more about the upcoming G7.

Kevin Sayer 0:41
And the goal is to simplify CGM for everybody across the board. What I often say is everything you love about G6, you'll love more about G7. The size is so small, you don't really recognize it's on your body. It's really a great profile, a little bigger than a nickel.

Stacey Simms 0:56
CEO Kevin Sayer will also share details about how they're preparing for the G7 rollout once it's approved, as well as details about Medicare and use but their pump partners. This podcast is not intended as medical advice. If you have those kinds of questions, 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. I'm your host, Stacey Simms, my son Benny was diagnosed back in 2006, just before he turned two. He is now 16 and a half. My husband lives with Type 2 Diabetes. I do not have diabetes, but I have a background in broadcasting. And that is how you get the podcast. My usual disclaimer, whenever we have them on, Dexcom is a sponsor of this show, you will hear their commercial later on. It's because we love the products. But when we have people from Dexcom on as guests to give you information, they don't tell me what to ask or what to say outside of that commercial. And I just want to take a minute to say, I very much appreciate Kevin Sayer and others from Dexcom being so accessible over the years, you know, they don't always answer my questions, but at least they come on and address them and listen to them. There are a lot of companies that are very reluctant to even do that, who won't come on the show. And that's really unfortunate because you, as you listen, and you know the diabetes community overall, I'm very much entitled to speak to these people and to these companies. So I will keep pushing nicely, but I'll keep pushing, I promise.

Quick heads up, there will likely be no longer format episode like this one next week. I'm still gonna do the "In the News" episodes that I have added live on Facebook and then turning them into podcast episodes. But I am, as you listen, if you're listening as this episode is going live, I'm at Friends for Life. I'm at that conference. They're having it again. I'm so excited. It's the first diabetes conference I have attended since February, no, since the first week of March of 2020. I went to a JDRF conference in Wilmington, just as COVID was beginning, it was very weird. If you did anything, any kind of public event in March of 2020, you remember that. But I'm back, they're back, I'm at Friends for Life. And I really don't want to rush out an episode. But if anything exciting or you know, breaking news happens or I'm able to record something and put it out, I will. But just a heads up, likely no episode next week.

Alright, and this week, not much of an introduction needed. Kevin Sayer is the CEO of Dexcom. And this interview focuses on some of what came out of the recent ADA scientific sessions and ATTD conferences. But mostly I share your concerns and your questions. We've covered a lot of these issues before, I don't ask a lot of follow up about things that, in my opinion, you can easily Google up. As usual, I had limited time with Sayer, who was doing back-to-back interviews. So if you have a specific question or if things went by very quickly, definitely jump into the Facebook group. You can comment on the post with this episode. We have some amazing members who will answer your questions, who will show you where to find the information. It's likely a previous episode, but we have people in clinical trials, we have people who were in on a lot of the investor calls. They listen, they take notes, they're fantastic. So if you haven't joined Diabetes Connections the group on Facebook, I highly recommend it.

My interview with Kevin Sayer here in just a moment. But first, Diabetes Connections is brought to you by Gvoke HypoPen and you know low blood sugar feels horrible. You can get shaky or sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can be different for everyone. I am 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, it's 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. And this made emergency situations even more challenging and stressful. This is so much better and 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 gvokeglucagon.com/risk.

Kevin, thank you so much for jumping on with me. Another busy time for you, as so many presentations, lots of studies, lots of news, lots of upcoming and anticipated news. So I appreciate you spending some time with me and my listeners.

Kevin Sayer 5:11
Oh, thank you for having me. It's always fun.

Stacey Simms 5:13
Let's set the table a little bit here. We are following up on the ATTD conference and you are in the midst. Dexcom, as we're speaking of ADA, this is all still virtual though, right?

Kevin Sayer 5:25
It's all still virtual, yeah. I was looking, was hopeful earlier this year it might be in person, but not yet, probably not till next year.

Stacey Simms 5:33
Well, as we look through the news that is coming out of both of these conferences, I could just start out by saying it's kind of, I'm not sure victory lap is the right phrase here. But it does seem that almost every study is basically, Kevin. CGM works, it's good, it helps, we get better outcomes from it. So let me just give you a moment to talk about some of that. Because there were so many, we can't really touch on all those studies.

Kevin Sayer 5:58
There are so many studies, and it's good for a number of different groups as well. You've got all the automated insulin delivery studies, and other than Medtronic's product, all these other studies are powered by Dexcom. You've got stuff in the UK, France, Insulet Tandem in the US, there's a lot of good news on the automated insulin delivery system front. And all these works are powered by Dexcom G6 right now, you've got studies that we presented at ATTD ast week, or that were presented by physicians that we're very well aware of. The mobile study, which was for patients with Type Two Diabetes who are on basal insulin only. You know, when you start a study like that, it's kind of a risk, because you ask yourself the question, "What happens if it doesn't work?" Well, it works. And what we learned is these patients, even though they're not making a decision every four or five, six hours, for eating, they are making decisions about what they eat, and what they do and how they exercise when they can see data. And they can see the effects of what goes on in their lives. And their time in range goes up significantly, if they can see what their time and range is, you know, they've been operating in the dark, and people would argue that they don't need it all the time, like I do. And so that study, we think is just really good and will be the basis, hopefully someday for getting CGM coverage for that group of patients. And so we'll push on that one. There was another study we had last week, or at ATTD. Early in the month, published in Belgium, where a coalition of diabetes gurus I guess, over there's the best I'd call them, it's really all the leaders in the Belgian diabetes community, took a bunch of intermittent CGM users and put them on Dexcom G6 for an extended period of time. And then we looked to see what happened. And what we saw is on real time CGM, the patients are better in every category, every single category, time in range, hyper(glycemia), hypo(glycemia), you name it, they did better. So we really did validate the Dexcom equation over competitors with that study. And we think it's very important and they realize real time CGM, it is important, it is important for data (to) be accessible. And the alerts are something that you can use. There are other studies being presented by other people in the Type Two, Arena-Kiser's got a study where they show patients do well on, Doulas got several studies, they're across the board. And the evidence is building for these other markets. But it starts at the beginning, obviously with automated insulin delivery and, and we work our way down. But we've had information presented across the board showing the utility of Dexcom. And if you've been to this study, this meeting 10 years ago, like I was when I first started here, my literally, my first month was my first Dexcom ADA, nobody even knew who we were. And those who did said yeah, the product's not real great. So times have changed pretty dramatically.

Stacey Simms 8:41
Do you remember what that first study that was presented at ADA or ATTD? Which one it was that you were there for 10 years ago? I'm curious of that.

Kevin Sayer 8:50
Back in the day?

Stacey Simms 8:50
Yeah.

Kevin Sayer 8:51
First study, we didn't even present studies. Back then, we, I will tell you the most important study we did, we did a study in where we first got ADA recognition, we did a study with our G4 system against a competitor in Europe. And we got a bunch of recognition there. And then the next study that really got us a lot of recognition in ADA meeting was our DIaMonD study where we show the people on multiple daily injections. If they went to CGM, they would get much better results. What it was hard for me to learn is you don't say I want to do a study like this and get it done in a week. It takes a couple of years to accumulate all the proper data, process it, develop all the subsets and everything. And so my patience has been has been level set with respect to studies like this. And there's multiple studies going on in the field that will be presented over the next several years.

Stacey Simms 9:44
All right. Well, that's a really good segue to moving ahead, because, as you know, my listeners are very interested in this technology. And the slide that probably got the most attention in our groups was one that was presented at ATTD about introducing the Dexcom G7, showing all of the features of this. So let me, I'm not going to go through all of them, obviously. And you and I've talked about this many times before, but faster warm up. It's smaller, simple application, all in one. This is all still part of the plan, as we had talked about before.

Kevin Sayer 10:19
Oh, yes.

Stacey Simms 10:19
Okay.

Kevin Sayer 10:20
Yeah. And, you know, we started working on the G7 before G6 was even in clinical trials. The G7 is a project we've envisioned for a long time, Verily, actually it was Google Health before then, Verily was a partner with us in designing this product, and we (were) working out for quite some time. And the goal is to simplify CGM for everybody across the board, what I often say is everything you love about G6, you'll love more about G7, the size is so small, you don't really recognize that it's on your body. It's really a great profile, a little bigger than a nickel. We're running this study with arm and abdomen indications. And while patients wear them wherever they want, we're going to show you that it can be worn wherever you want. And I think that's a big deal, that we go ahead and do the work to do that. The faster warmup is kind of mind-blowing when you put a G7 up and then you look after you pair it. And then you look and see you only got 25 minutes left, it's like, oh, wow, I don't have to do the two hour countdown. You know the accuracy and performance that Jake presented at ATTD shows that we're not, we're not ever going to go easier on the performance side and say good enough, we always push ourselves to offer something that will keep people safe and confident with what they have. The app is completely new, we'll build things into the app over time, like automated, the frequently asked questions feature we have now but we're just gonna keep making it better. Some of the features of our Clarity system will ultimately be in the app. So you'll get more information. When you go to it and look at it out of the get go. You know, we'll get it approved. It'll be a while before our partners have integrated their systems. But we're working with Insulet and Tandem already on G7 integration, it'll be able to talk to multiple devices at the same time. Its manufacturing cost ultimately will be less expensive. It's been designed for an automated process. And we've got fully automated lines up and running to assemble the G7 sensors. We have, in fairness, have automated G6 lines up and running now too, but we've got special transmitter lines and center lines and those kinds of things. It is going to be, a really, the most advanced CGM ever.

Stacey Simms 12:25
Well, you've touched on a couple of listener questions already in that testing alternate sites, including arms, integration with the systems that are already using G6, so I don't want to spend a lot of time going in depth on things that you've mentioned. But in the slide it said direct to watch capability.

Right back to Kevin clarifying what was meant in that slide. But first, Diabetes Connections is brought to you by Dario Health and bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny he gets older, you want that kind of support so take your diabetes management to the next level with Dario. 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 hyperglycemic events. Try Dario's diabetes success plan and make a difference in your diabetes management. Go to https://mydario.com/diabetes-connections for more proven results and for information about the plan. Now back to Kevin Sayer, answering my question about what the company means when it says the Dexcom G7 has direct to watch capability.

Kevin Sayer 13:44
Capability. Yeah, it won't go there first pass. But we had to have different electronics and a different radio set to go direct to watch than what we have in G6. And it's easier to get us to change than it is to get Apple changed or to change their watch. And so as we were doing the G7 system, we did contemplate that. So it is configured to do so, I do not believe it's in the first release. But it will be not long after that. We'll have a direct to watch capability. And we know people really want that, the watch presents interesting problems. And we can all sit and say we want that. But you have to charge your watch every day or at least every 36 hours. Where are you getting your alerts if you're direct to watch and it's on the charger? And you're in different parts of your house? There's complexities to the watch that go far beyond just direct to connect. And particularly with the FDA who've used the alerts in the alarms and the connectivity is so important that we had to make sure we do it right. So we'll work on that and get it wired appropriately. But I look, I know what something I would want If I were a user. So we continue to push for it.

Stacey Simms 14:44
Just to follow up on that. When you say it won't be in the first iteration of it but you know, it'll be, it's capable, it'll come, that it kind of implies that you figured out what to do with the alerts and alarms when someone hangs it up to charge.

Kevin Sayer 14:56
I don't know what they have figured out. I just know they're addressing it all. I have to plead the fifth, I just, as I've asked that question, they said, "Well, here's a problem. How are you going to deal with that?" I said, "Well, you guys don't have to tell me." They'll come up with the right answer, Stacey.

Stacey Simms 15:09
Alright, so, I'm sure they will, but to say direct to watch capability, there's a little parentheses that says when we figure it out,

Kevin Sayer 15:15
Oh, I know we're working on it, but...

Stacey Simms 15:17
Okay.

Kevin Sayer 15:18
But Stacey, we couldn't even go direct to watch before with the electronics. We couldn't go direct to watch with a G6 transmitter, the G7 electronics stack and configuration is such that it can go direct to the watch, we could not with G6.

Stacey Simms 15:32
Okay. Many more questions. My listeners are very, of course, interested in the adhesive changes. Is the G6 to G7 change, I know you're addressing this, I know you're testing it, we've got emails from people who are in different trials for adhesive and reactions and things like that. And I have lots of questions, people say it's getting better, other people say it's getting worse. Anecdotally, it's very difficult, obviously, for me to know. Talk to me a little bit about those changes and how it's improving.

Kevin Sayer 15:58
Well, we've tested numerous adhesives before we landed on the adhesive we selected for G7. One of the reasons we kept the product life down to 10 days is to make sure we have enough adhesive to get to that 10 days. We'll be putting the overpatch in every box. So if somebody wants an overpatch, they don't have to call us. So everybody should be thrilled with that one. And it's quite easy to use, we're hopeful that there's no allergy with G7. Somebody's always gonna have a reaction, that's just physiology, but we're working with new tapes for G6 already, where it will hopefully have something. The things that cause a lot of the allergic reaction in G6 we've eliminated from the G7 manufacturing process. So we're hopeful that a lot of this stuff goes away on its own, we'll monitor it very quickly. But we've already got four or five other G7 adhesives in test in addition to the ones that we're going to launch with, to make sure we can create better options in the future if we need to. So, you know, stay tuned on that one, we are comfortable. As I sit here, we will not have the same level of reaction that we would have at G6 when we change it. But yeah, we won't know till we're out there.

Stacey Simms 17:09
Yeah. And you mentioned the 10-day wear and part of that being for adhesive. But my understanding is that the idea is for 14-day wear for Dexcom G7.

Kevin Sayer 17:19
Eventually.

Stacey Simms 17:20
Eventually.

Kevin Sayer 17:21
Eventually, not again, not first pass. We'll get it approved with 10-day data, very important to us is that we provide our customers with the experience they paid for and they signed up for. And we've looked at competitors' reliability data, how many make it out to 14 days, or how many make it to seven days if they only have seven, and we look at, it's one of the key management indicators, we monitor how many of our sensors are making it out to 10 days, and we've set a pretty high bar for how we want our system to work. And while we could have launched a longer lasting product, we wouldn't have hit the percentages with the configuration that we have. And so we said, OK, 10 days is enough. Our patient base is fine with 10 days as long as we deliver on the 10 days that we promise. And we'll get into longer live trials literally as soon as we're done with these and hopefully move it over. Because that does cost us a lot less and give us more pricing flexibility over time for the various groups. But for now we'll go 10 days, mainly, so we have more reliability. That's the biggest reason.

Stacey Simms 18:22
I have a few more G7 questions, but they're about pricing and accessibility.

Kevin Sayer 18:26
Well, I, you know what I can, I can't answer most of them...

Stacey Simms 18:28
Okay.

Kevin Sayer 18:29
...because we can't really go address pricing until it's approved.

Stacey Simms 18:32
Right.

Kevin Sayer 18:33
And we have as we put our G6 contracts together over the past couple of years, done so in anticipation of a G7 product to whereby, for example, for Medicare, it's a fixed charge per month. And for many of our insurance contracts, it's resembling more that type of business arrangement, we're hopeful that we can transition to G7 very quickly. But we will have to go to all your payers and get G7 covered before they'll pay for it. We're hopeful that'll be a quick process. But in the meantime, G6 is a great product and people will be able to use it. I can't give you a timeframe as to how long that'll take, we'll have to go to CMS, we'll have to go to all the Medicaid groups as well. What we're trying to avoid, and let me repeat what I don't want to deal with, is one of the things I dealt with with the G6 for a long time, we didn't have enough inventory of production capacity to get it to every group. So the Medicare population was stuck with G5 for quite some time. Those emails were not good. We want to make sure it's equal access when we can get it in the channel for everybody. And we're trying to build that type of capacity.

Stacey Simms 19:34
A couple of "what-if?" questions, just kind of looking down the road. JDRF recently announced that they are looking for and this is the very beginning. So as you listen or as you're watching, this is not in the works yet, this is a call for research, that they are looking for a CGM that could also measure ketones, and I haven't seen any companies step up yet publicly to say yes, we're working on that, we'd like to be part of that. Is that anything that Dexcom is thinking of doing?

Kevin Sayer 20:02
We've explored this for quite some time long before the JDRF initiative. And the question I keep asking, is continuous ketone measurement important? We know that for the pediatric world, that if you measure ketones continuously, you might predict dangerous DKA moment before it happens. But at what cost to the system? And is there a cost benefit associated with this? So we're setting all those things. We're in the learning phases, we think we have a platform that can do that. But we've got to decide do you sacrifice glucose accuracy? If you throw a ketone sensor on there? There's a lot of answers we don't have yet. But we're in the early phases. And we've talked with JDRF and others about it, is there a better way to measure ketones that might be easier and less expensive? I don't know. We've looked at several other analytes to go with our system over time. And I think in the future, that'll be something but that's not coming from us for at least three years, if not longer.

Stacey Simms 20:56
Got it. You've looked at other...

Kevin Sayer 20:58
Analytes

Stacey Simms 20:59
Analytes, tell me about what else has been looked at just for, you know.

Kevin Sayer 21:03
Well, I won't go into all of them. I certainly look at lactate from a stress level. And for physical fitness, for example, there are a lot of athletes who'd like us to produce a lactate sensor to whereby they can measure the progress of their physical fitness. There's also a use for lactate in the hospital environment with we think with respect to predicting sepsis over time, but those are you know, that's one of them. And we've looked at a few others and failed, I won't go into all those.

Stacey Simms 21:31
That's okay.

Kevin Sayer 21:31
We've looked at some that may be promising. What we find from time to time is yeah, what we'd love to measure but we can't is insulin on our wire. If there are any way we could measure insulin in addition to glucose, wouldn't that be awesome? We know exactly how much insulin you have on board. And we know exactly well, we, we've not been successful at that one. That would require different technology than what we have. So we look at all of them. And over time, we think we'll have some good stuff there. But not for a while.

Stacey Simms 22:00
Um, you know, you mentioned hospitalizations. And last year we talked about the CGM program in hospitals. Forgive me I, there were so many studies at ADA and ATTD, I don't know if this was presented. But let me ask a general, how is it going? Are hospitals adopting and adapting to using a CGM?

Kevin Sayer 22:16
They are adopting and adapting is harder than adopting.

Stacey Simms 22:19
Yeah.

Kevin Sayer 22:20
Because, you know, this is a device that was designed for your listeners. And for you. It wasn't a device that was designed to be used in a hospital room. With all of the cybersecurity and connectivity issues of a hospital, where do we send the information? How do we get it there? And so we've got to solve the workflow issue to make this meaningful in the hospital environment over time. What we have learned is our technology is more than good enough to go there. And that the places particularly where you have an endocrinologist very heavily involved in treating the diabetes patients in the hospital rather than a cardiologist or somebody else, when there's an endocrinologist involved, we can go very quickly, they can learn. Some of the hospitals would take an approach, let's put this on everybody. Others would only take an approach, let's put this on severe cases. So there have been different protocols used. But by and large, the response to CGM in the hospital has been very, very good. And we think it is a great market for us over time, we've got to work on the proper configuration for workflow. I mean, one of the best examples, how do you get the data to the medical record? Because everything in the hospital goes to the medical record. How do we make that seamless? We haven't figured that out yet. And that'd be important for all of our users even outside the hospital. Imagine how much easier would be to go to your doctor and have your Dexcom data already sitting in the medical record when you get there. We're not there yet. But we're having a lot of good discussions on that front.

Stacey Simms 23:41
Got it. One of the topics that's been kind of in the community recently, and I don't think it's so much Dexcom. But I want to ask you, anyway, is this issue of and you mentioned, athletes who want to measure certain things, of people without diabetes, using Flash glucose monitoring, or continuous glucose monitoring. I'm curious is that a market that Dexcom is looking to pursue? I mean, the G7 is smaller, it's lighter. And you know that I'm asking this because we've talked many times before. People who use insulin are very much afraid of not being able to afford, being left behind if many, many, many people who may not use it in the same way, start adopting these products.

Kevin Sayer 24:19
Let me address that in a couple of steps. Let's talk about the use case first. There are people, a lot of people using Dexcom, who do not have diabetes, as a health and wellness tool. And there are a number of apps that are being developed that require glucose information to level set your nutrition. Now, possibly Type Two diabetes or prediabetes, but there are groups and some groups with some very interesting ideas as to how to change your diet based on glucose data to make you healthier. We were used many years ago on The Biggest Loser with every patient that came in the door and one of the production people, I don't remember which one, might have even been the physician, came to me and said, "You need to get out of the diabetes business. You can make a lot more money in weight loss." Well, we're not getting out of the diabetes business, that's where we are and where we stay. One of the things we've contemplated with G7 is the fact that we're going to go to more people. And we're going to go to more people than just the Type One population. We plan on having capacity to build over 200 million sensors, before the end of 2023. 200 million sensors is gonna be more than enough for the intensive insulin using community. And as far as cost, well cost comes down if we can sell that much in volume. Now,

Stacey Simms 25:29
Well, hello...

Kevin Sayer 25:29
I would also argue...

Stacey Simms 25:30
You're in the American healthcare system, Kevin. You know this is not a market-based device, we don't...

Kevin Sayer 25:36
I'm aware, I'm aware of that.

Stacey Simms 25:38
I'll let you finish, I'm sorry.

Kevin Sayer 25:39
Let me keep going. At the end of the day, as you look at what somebody pays for taking care of themselves with delivering insulin and powering the insulin pump, that's a very complex task that requires a lot of customer service and support. If somebody is only losing weight, that's a different problem we're trying to solve, or if somebody is trying to titrate a Type Two drug, that's a different problem. I think we can find a way to make everybody happy. I don't think we're gonna disappoint anybody. And we planned this company and built this company to make sure that we have capacity to do all this, it's, you know. It's, one would look at me, I mean, we're gonna spend over a billion dollars on these factories over the next two, three years here. This is not a simple endeavor, it is a large investment. And this technology first goes to the community that we serve, now worldwide. We have to expand worldwide, but get it to the group in the US as well. After that, we'll go the other places, but we're going to have more than enough capacity to do that. In fact, one might question if I'm insane, or we're insane to create so much capacity and the 200 million, quite candidly, the wave design, the G7 lines, if we need to sample at a factory, we can do it very quickly. So this is a, this is a long term play for us. We believe this technology be beneficial to a number of people. And so if we can get, if we can get all these sensors out there and all these uses, I think it'll benefit your audience more than it'll detract from.

Stacey Simms 27:00
I know we're going to run out of time. I've got two more questions. You've mentioned,

Kevin Sayer 27:03
You got them, I'll give you time for two questions. Let's finish.

Stacey Simms 27:06
Okay, alright.

Kevin Sayer 27:07
Finish the way you want.

Stacey Simms 27:09
You mentioned already, lots of different apps are being developed, not all diabetes. You know, a couple years ago, Dexcom announced the availability of the API, you know, developers can get data through third party apps. I'm curious, is there anything going on maybe behind the scenes? Or are you doing anything further to kind of foster more innovation in the early stage, like the development of other companies? Or is that a thing of the past?

Kevin Sayer 27:31
No, I'll give you two things that we're doing. Number one, we have a live API use where you can have a live display of the data. That's on file with the agency right now, it'll eventually get approved. So you'll be able to run the Dexcom app, data'll go to the cloud, comes straight down to another one. I think that is a very good use of the technology and it shows our willingness to work with others. So that is a good use. One of the other things we have coming, then we'll see where it goes. Our intended use case in the beginning was with major healthcare systems. But we have another app that we've shown pictures of, it's an app inside an app. So let's say for example, you go to Scripts here in San Diego, I'll pick Scripts, and Scripts has their own healthcare app. And they also want to be the center of your diabetes care, particularly for Type Two diabetes, and they might have you wearing a sensor for something other than isulin delivery. We've developed an app that can reside inside another app, to whereby you can have your Scripts experience, but you can touch an icon and you go to a Dexcom experience. And it, it's an app that resides inside the app and for security, we're able to keep others out. That app inside the app concept is nothing we've done to commit to others, to give them an opportunity to use Dexcom technology in a different way. And yet preserving create their own experiences. We're very cognizant of the fact that we can't solve every problem, and there might be better experiences. And we can create. Okay, got time for one more.

Stacey Simms 28:54
All right, last question. And it's more of a request. But the question is when you, and this is from a couple of listeners, when you start rolling out the G7, any consideration for including and this may be an insurance question too, one extra sensor a year? So three in a month.

Kevin Sayer 29:10
What a wonderful question. And let me tell you something, we spend an inordinate amount of time analyzing sensor failure and returns and those types of things. We have run models that say if we give everybody, if we just gave everybody x more sensors a year, we could avoid all the phone calls and all of the issues and all that stuff. We analyze this warranty policy all the time. And I think what you'll see with G7, we'll have better tools. My hope someday just for your users, I would love to just diagnose this in the app in general, to whereby if your sensor fails, we know when we say your sensor failed, tap on this icon to get a new one. The flip side of that is we have a business to run and we can't do all free centers. So if it comes to the time, if you buy 12 months for the sensors, and pay for 12 months for the sensors, let's make sure you get 12 months worth of use. And if that means we ship you a free one because one failed, that's fine. But we're still, you know, we found one patient in another country, I won't say which one, they got 48 free sensors and purchased all of three, because they spent all this time. Those are the far exceptions from the rule, people will just want care. And so we are doing everything we can to come up with better policies to make it easier for you. Because quite honestly, those phone calls cost us way more money and they cause you guys frustration, we are going to make this better over time. That's a promise I can make. And let's talk about it in a future conversation and I'll tell you some of the things we've done.

Stacey Simms 30:35
All right, we'll hold up for a baker's dozen one of these days. But Kevin, thank you so much. You're always very accessible...

Kevin Sayer 30:41
Thank you.

Stacey Simms 30:41
...and I really do appreciate your time.

Announcer 30:48
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 30:54
Lots of more information at Diabetes-connections.com. If you haven't seen it yet, a while back Dexcom sent me what they call a sizzle reel of their G7, what it looks like. So I'll put that video in the show notes as well. We have a YouTube channel. I don't put a lot of extra stuff there. But things like that Dexcom video, and the "In the News," you can watch it if you'd prefer, I always put that on YouTube. And all these episodes are there as well, although they're mostly just the audio, but a lot of people listen, watch, they listen that way on YouTube. So that'll be linked up in the show notes. And I realized I haven't mentioned it on the show yet. But you know, this time of year getting your Dexcom or getting any gear to stick can be difficult, lots of wet and sweat in the summer. And I've created a guide, seven top tips to get your diabetes gear to stick in the hot summer. Over the years, we've tried so many things. Benny has had a pump since he was two. He's had a Dexcom since he was nine. So a lot of, you know, trial and error. And this guide is available, absolutely free. So I will put a link in the show notes. If you get the newsletter, you may have already seen it. But just in case you don't. And the show notes are always at Diabetes-connections.com. Every episode has its own homepage with a transcription, started that in 2020 and we are working our way back. If you're listening on a podcast app, there are shownotes there, but in case you have problems with links or whatever, you can always go to the episode homepage.

And as I mentioned, Diabetes Connections is brought to you by Dexcom. It is hard to remember what things were like before we started using the Dexcom. I just said Benny was nine, right? But he had diabetes for seven years before we started using it. And I guess I haven't really forgotten what that was like. But it's just so different now. When he was a toddler, we were doing something like 10 finger sticks a day. And even when he got older, we still did at least six to eight every day, more when he wasn't feeling well or when something was off. But with each iteration of Dexcom, we have done fewer and fewer sticks. The latest generation the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny's little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool. And Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G6 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.

As I mentioned at the top of the show, I am at Friends for Life right now as you're listening. If you're listening as this goes live, on the day that it goes out there, I'm traveling to Friends for Life, and I'll be here for the week. If you're not familiar, this is the largest family diabetes conference in the country. It takes place every July in beautiful Orlando, it's so hot, but it's a great time, it's on the Disney World property. I don't usually go to the parks if my kids aren't coming. They're not coming with me this year, so I doubt I will be going into a Disney park. But it's a fabulous conference. And I just want to let you know, I'm doing a new presentation. I'm working up some new stuff. I'm very excited about it. And this one is called "Reframe your Diabetes Parent Brain." And I gotta tell you, I am really sick and tired of seeing people berate themselves and talk about mom fail and tell themselves how terrible they are as parents. So this is going to be a session where we talk about the mistakes we've made. But then I want to help people reframe them so that they see what they've learned. You know, my whole philosophy is you mess up and you learn. And that's what this is all about. So I'm really excited to try it out. Will it go over well? I don't know. You know, I think so many diabetes parents are so wrapped up in perfect now that they feel like if they go above 120 or 150 that they failed their children. So, gosh, I feel really passionate about it. And we're going to try that. And then for the fall, I've been getting a lot of questions about sending kids to camp, and I've gotten more and more of these over the years. You know, how do I send my Type One kid to regular sleepaway camp. So I'm working on a presentation about that because fall, August, September, is when a lot of people sign their kids up for next summer. So as you listen, if you're affiliated with a group that does meetups or zoom calls, or in-person conferences, let me know. I would love to speak to you and start these dialogues and help you really help your kids thrive with Type One. We're not done. We're far from done, right? Benny's 16. But you know, he's a confident and happy kid. So knock wood. Where's all my wood to knock? I say all the superstitious stuff, right? I mean, I don't kid, you know how superstitious I am. But I really hope that I can help other parents. You know, the idea here is that you don't worry. The idea here is that you do it anyway.

All right. Thank you so much for joining me. Thank you, as always to my editor, John Bukenas from Audio Editing Solutions. I will see you back here in a couple days for the "In the News" episode, but again, no long format episode, the following week. Alright, I'm Stacey Simms. Until then, be kind to yourself.

Benny 35:49
Diabetes Connections is a production of Stacey Simms Media. All rights reserved, all wrongs avenged.

 

Jul 2, 2021
It's "In the News..." the only LIVE diabetes newscast!
Top stories this week:
Walmart private label insulin, Omnipod 5 pediatric study, Afrezza pediatric study, Stem cell updates, A new extreme challenge for a T1D ultra-athlete
Join Stacey live each Wednesday at 4:30pm EDT at the Diabetes Connections Facebook page

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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 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 - Walmart launches the first-ever and only private brand analog insulin at a discount off the list price.

This new brand ReliOn Novolog will have vials priced at $72 and a package of pens at $85 – compared to the list price of $289 and $558 respectively

Walmart worked directly with Novo Nordisk for the manufacturing of this insulin which will be in regular stores this week and in Sam's Club locations in mid-July.

Interestingly, this price is not below the one offered already by using coupons from groups like GoodRX or even the insulin manufacturers assistance programs. If you need help paying for your insulin, I’ll link up more info on that as well.

https://finance.yahoo.com/news/walmart-launches-private-label-insulin-at-discount-122021367.html?ncid=twitter_yfsocialtw_l1gbd0noiom

https://www.goodrx.com/novolog

XX

As expected, loads of info and studies from the ADA scientific sessions virtual conference that just wrapped up. Please check the links I’ll include because these are just highlights.

XX

Insulet is out with the results of their latest pivotal trial for the Omnipod 5 Automated Insulin Delivery System in very young children. The system improved time in range and reduced A1C in children 2 through just under six. I can tell you from experience, this is a tough age group for many reasons, including the fact that they can’t self-treat or really tell you what’s going on.

Parents and caregivers reported significantly improved sleep quality

Another Omipod 5 study with people aged 6 through 70 showed similar improvements. The system is awaiting FDA approval.

XX

ViaCyte, Inc. released preliminary clinical data from its stem cell-derived islet cell replacement therapy for people with type 1 diabetes. They show the implanted pancreatic cells produced their own insulin – which increase glucose-responsive C-peptide levels, increased time in range, and reduced A1C.

This method protects the stem cells in a pouch – that’s put very simply – Viactye is working on several different methods toward a functional cure.

https://www.prnewswire.com/news-releases/viacyte-reports-compelling-preliminary-clinical-data-from-islet-cell-replacement-therapy-for-patients-with-type-1-diabetes-301320084.html

XX

Another company on the same track.. Sernova Corp also showing their  Cell Pouch transplanted with insulin-producing islets is safe and effective. One patient has finished the trial and has now remained insulin independent – that means no requirement for injectable insulin - for 14 months with optimal glucose control.

This is a person who’s lived with type 1 for 47 years..

https://www.thenewswire.com/press-releases/1k3wFKYMv-sernovas-principal-investigator-presents-interim-data-and-positive-patient-outcomes-of-phase-i-ii-t1d-study-at-the-american-diabetes-association-81st-scientific-sessions.html

XX

More from ADA conference - In two small studies, the ultra-rapid acting insulin Afrezza was found to be safe in children with type 1 and adults with type 2 diabetes.

Inhalable insulin is currently only approved for adults so the goal here was to look at safety.. which looks good. But it’s also worth noting that . Time in Range increased from 39% at baseline to 62% which is more than four additional hours spent in range each day!

https://diatribe.org/top-highlights-day-1-ada-scientific-sessions-2021

XX

New info in on Medtronic’s Extended-Wear Infusion Set. This is the pump inset that lasts seven days. This study shows that 75% of the time it makes it to the full seven days – Medtronic’s 3 day infusion sets have a 67% survival rate.

Device failure rates were very low – 8 cases out of more than 3-thousand sessions. Satisfaction was high – with people citing convenience of use, ease of insertion, and comfort of wear. This extended wear set is approved in Europe, available in Finland and has been submitted to the US FDA.

https://diatribe.org/day-2-3-highlights-ada-scientific-sessions-2021

 

XX

More to come, including news on Control IQ and an endurance athlete starts an amazing new trek.. but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

  • Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this all actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts..

Back to the news…

XX

Control-IQ continues to get high marks. This study looked at adults with an average age of 70 who already had A1Cs around 6.9. Three months after staring Control IQ, time in range increased from 64% to 87% which is 5 and a half hours more each day.  All of these adults had prior experience with continuous glucose monitoring and insulin pumps.

XX

Former guest of the podcast, Sébastien Sasseville, is off on a mission to cycle across Canada in 14 days! Sasseville is a Canadian endurance athlete – he lives with type 1 -  and it’s going to take about 250 miles a day to get to this goal.

Sasseville says he’s riding to bring attention to the issue of access to technology – he uses the tslim x2 and Dexcom G6 – and to support JDRF Canada’s Access for All campaign. He set off on June 28th and is documenting the journey on social media.

 

Sebastien Sasseville cycles across Canada: https://www.facebook.com/CanadaRuns.

 

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 Dexcom’s CEO all about the upcoming G7.. I asked him all of your questions.

Our current episode out right now is with Nick Jonas – sharing his thoughts on the new campaign to educate about Time in Range and talking about he manages his T1D during concerts, shooting movies and during TV tapings.

Thanks and I’ll see you soon

Jun 29, 2021

Dexcom is going big in their new campaign to get us talking more about Time in Range. This week you'll hear from their most famous spokesperson, Nick Jonas.

The singer and actor was diagnosed with type 1 diabetes at age 13, back in 2005. In this recorded webinar, he answers questions about the new campaign and shares some behind the scenes info about his own journey with diabetes.

As Stacey says in the episode, for this event, media was invited to send in questions. The organizers selected the questions and they were asked by Melissa Katz, who is credited as host and representative of The Global Movement for Time in Range.

The Global Movement for Time in Range is a global consortium of diabetes community thought leaders working together to improve the understanding and accelerate the adoption of time in range as the standard of care in diabetes management. With the support of Nick Jonas, Beyond Type 1, Children with Diabetes, College Diabetes Network, Dexcom, JDRF International and Taking Control of Your Diabetes, the group will jointly address issues to improve the lives of people with diabetes. To learn more about the movement and how to get involved, visit WhenInRange.com.

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, a new effort to get us talking more about time in range. Dexcom is launching this campaign with their most famous spokesperson, Nick Jonas,

 

Nick Jonas  0:35

I would say A1C is a useful piece of data. But as I mentioned before, we're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended is really incredible thing.

 

Stacey Simms  0:56

Jonas answers questions about the time in range campaign and shared some behind the scenes info about his own journey with diabetes. 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 and oh so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed way back in 2006. Right before he turned two, he is now 16 and a half. 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 doubt he needs this introduction. But singer and actor Nick Jonas was diagnosed with type one at age 13 in 2005. He very famously partnered up with Dexcom in their first Superbowl ad earlier this year, and now he's part of that company's effort to educate about time in range from the news release they sent over Dexcom along with beyond type one and organization Nick Jonas co founded children with diabetes, the college diabetes network JDRF International and taking control of your diabetes has announced the global movement for time in range and awareness and education campaign to improve the understanding and accelerate the adoption of time and range as the standard care in diabetes management.

For this event, we were invited to send in questions ahead of time, the organizers selected the questions then they were asked by Melissa Katz, who is credited as host and representative of the global movement for time in range. I sent in three questions. I'll come back after and tell you more about that. And I'll share the one that they didn't use. I will tell you right off the bat. Everybody I know in the diabetes media on that call sent in a question about Nick using his platform to push for insulin affordability and access.

quick housekeeping note. Yes, Dexcom is a sponsor of the show, but they don't tell me what to say. longtime listeners are familiar with this. All my disclosures are on the website, Diabetes connections.com. But it's always worth the reminder. And you should know I edited out the very beginning of the session, they played a video about time and range. I'll link that up in the show notes as well. And I edited out the very end where they talked about details for media about getting the audio and some other notes. Other than that it is the full unedited q&a, and we'll hear it in just a moment.

But first Diabetes Connections is brought to you by Daario. Health. 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 my son 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 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 daario.com forward slash diabetes dash connections.

 

Melissa Katz  3:59

So our guest of honor here needs no introduction, especially in his own diabetes community. So please welcome diabetes Rockstar Nick Jonas.

 

Nick Jonas  4:07

Hello, diabetes Rockstar. That's my official title. Hello, everyone. I'm calling in from Cleveland, Ohio at the moment. So I appreciate your being on excited to talk to you about this global movement for time and range. It's obviously very important to me as a person living with type 1 diabetes since 2005. Now, I guess and I'm excited to be launching this movement for time range alongside Dexcom my partners and leading diabetes nonprofits, including one that I co founded, which was part of that video beyond type one, our goal is to make people aware of time and range and its benefits. And also just you know, I think so many people either live or know someone that lives with diabetes that are just not aware of this and to be able to kind of put this in the forefront and start a conversation around it. And it's an amazing thing for me as a diabetes ambassador and advocate, thrilled to be able to talk to you today and walk you through it all.

 

Melissa Katz  4:58

Fantastic. So let's get right to it, as you know, the diabetes media submitted questions in advance, so they're on line waiting for those answers. And we're going to start with Matthew Garza from diatomic. He asked, who introduced the concept of timing range to you.

 

Nick Jonas  5:14

But like all things with my life with diabetes, I rely on my doctor or everything, wonderful doctor, out of UCLA in Los Angeles and endocrinologist there. And we've had a candid conversations. And I think that the thing that really stood out to me was just talking to the benefits. And you know, we talked about in that video, high blood sugars are not ideal and have an effect on day to day life, diabetes, and obviously, lows can be really dangerous, and also have a major effect. The Dexcom clarity app definitely helps me with that, and has allowed me to see in real time throughout the day, my time and range or moments when it's not. And that's the thing to remembers, as a type one diabetic, you know, my main advice to newly diagnosed people is just to take a deep breath, and try to understand that there's going to be days that are unpredictable and harder than the others. And don't get down on yourself for that there are helpful tools and things that make that a little easier. But it is a journey. And once you can keep a positive attitude, it'll be alright.

 

Melissa Katz  6:11

So that would encourage other people with diabetes to have this conversation?

 

Nick Jonas  6:15

Well, I think there are a lot of ways, I think we hope to kickstart conversation here, obviously, around the importance, time and range and how it makes people's lives better. And I can speak to that personally, which really has become such an important thing for me to think about that time range and what it really means and not only relying on a one C, which would be your you know, kind of collect reading for two to three months and quarterly reading. This is a really valuable real time tool. And there's there's a lot of assets for people that maybe want more information, want to learn more about this and the impact you can have on their lives with their family and friends lives, when in range calm is a good one, obviously, and other social media tools and links that we'll share with you later. But a lot of good conversation starters out there and thrilled to be able to help in that process.

 

Melissa Katz  7:06

That's a great way to segue to Jessica apples question. She's from a sweet life. And she's asking, we know CGM is a great way to monitor time and range. But what's the best way to achieve time range in your opinion?

 

Nick Jonas  7:19

Well, everyone's journey with diabetes is different. And so I can only speak to mine. For me, it's a combination of obviously relying on my doctors kind of input and real time changes that we make to, you know, my life with diabetes as a whole one. And part of that is physical activity. Diet is a big aspect or just meal management and kind of understanding what's serving my body. And a lot of ways because I live such a crazy lifestyle, I think of myself more so as a an athlete in some settings and kind of prioritizing, living a healthy life with my diabetes, but also wanting to perform my best. And so there's, there's a combination of things that come into play there. And one of the other aspects is obviously, knowing where my glucose is a real time. And Dexcom definitely helps with that pretty obvious. And you know, I'm, like everyone else in the world person that looks at my phone way too much. And so having that information, right there is really helpful. Again, that's just my kind of personal, customized journey. And it's, as I said, a combination of all those things, but for everybody out there, it's gonna be different and you got to figure out what works for you. But having a bunch of tools in your toolbox is a helpful thing. And so that's probably a good place to start.

 

Melissa Katz  8:31

Alright, so speaking of athletes, it was a big moment, during the Superbowl to have you up there doing awareness raising and education about CGM. That was pretty exciting. However, there was also some concern afterwards about access. That was a big conversation that occurred which was I think, was a good thing. And Ross Wallen from diabetes daily is asking, CGM can be expensive both in the US and other countries, especially those without robust healthcare systems. And in some countries, it's not available at all. Is there any worry about emphasizing time and range when some people won't be able to access CGM?

 

Nick Jonas  9:03

I think that very aware all of us on this call and beyond and all the partners, the need for access and that growing conversation and priority for us all in the US and globally. You know, I think that that the exciting thing for us was starting the conversation about awareness in a big way on something like the Super Bowl was a really big step. And so I was thrilled to be a part of that. And thinking back to a time You know, when I was newly diagnosed, if there was someone that I looked up to or admire, who normalized something like diabetes for me on a stages basis, that would have been really exciting, which I think just again, helps the bigger conversation of this need for access around the world. And we have the onsite one are fully committed. We have a wonderful board there that that have been speaking about this a lot and really building a game plan from the ground up and wanting to see that change really happen and do all we can be part of it as well as the other partners I know that are on this call. So it's priority for us, and definitely something we'll work on is. But as you said, the Superbowl was was such an exciting moment, and something that I hope we can do more of taking diabetes to big stages like that. And just normalizing a bit.

 

Melissa Katz  10:25

Absolutely. So you mentioned A1C earlier, and my classic is with diabetes, mine is asking a when c remains the gold standard for diabetes care, where does it fit in this admission?

 

Nick Jonas  10:38

Well, I'm certainly not a doctor. I wouldn't even consider myself a diabetes expert, obviously, even though I've lived with this thing now for quite a while and have my days where I feel like I've really nailed it. But I would say A1C is a useful piece of data. But as I mentioned before, you're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended, is really an incredible thing. So I think that that time and range shows the trends in real time provides much more complete picture of glucose control over time, which is really a great thing. It's not to say that it's a, you know, one or the other. You know, there's many ways to manage your life with diabetes and enhance your life diabetes, but I think that the more information you have, the better it's going to be. And the more time and range, it just is obviously going to be

 

Melissa Katz  11:42

better days. You probably know all of our diabetes media or either have type one or have a family member for the most part. And Stacey Simms is a mom with a son who has type one, and she has a podcast called Diabetes Connections, and shows her a little bit more about your personal journey. So her question is, we'd love to hear about how you prepare for and recover from physical days.

 

Unknown Speaker  12:05

I know you have a lot of those.

 

Stacey Simms  12:11

Right back to Nick answering my question. But first, Diabetes Connections is brought to you by Gvoke Hypopen . I mean, 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 do 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 dot com slash risk.

Now back to Nick Jonas, and he's answering my question, actually a listener question about what he does to plan for and deal with very active days.

 

Nick Jonas  13:05

Yeah, I mean, I have a physical day coming up today, rehearsals and I'll be moving around singing and dancing around all day and all that and, you know, my PrEP is really to try to get good rest, and then start with a good meal, something that kind of sets me up for success with all the necessary protein and macronutrients and other sort of sustaining carbs. And then from there, just about staying on top of it. I like to just kind of frequently check in and see where I'm at and make real time adjustments. Knowing to that, obviously, the physical activity is going to have an impact. And whether it's this thing I'm doing now, or touring, or even just going out for day golf, you know, I'm always trying to stay on top of it and rely on my friends and family to if there are things that I need or if I need a second to take care of something, whether it be high or low blood sugar, then I take the time to do that.

 

Melissa Katz  13:55

Yeah. All right, as I said, faces a mom. So she's also concerned about your sleep. And she's asking any insight for your routine and how you prepare for sleep. Well, I

 

Nick Jonas  14:04

think like most people, my routine is basically to watch Netflix. So I get tired and hope that I can just sleep peacefully through the night. That seems to be the routine these days. But outside of that, it's pretty simple. I just, there's a certain range I like to be in before asleep, so that I don't overcorrect. If I'm higher or low that I'm hanging out there too long. I try to kind of target that range. And then obviously, you know, the alarms within the Dexcom really helps well and when I'm traveling I'm not with my wife, I'll share with her and that kind of gives her peace of mind which is a wonderful thing and really helpful tool.

 

Melissa Katz  14:44

Alright, so we're talking about the Super Bowl and we've heard so many sprays of little kids kind of jumping up and down. So excited to see you on TV. And you are diabetes role model for so many people. I'm curious about who were your diabetes role models when you were growing up?

 

Nick Jonas  14:58

Well when I was newly diagnosed that there really wasn't a person that I knew of that had diabetes or a role model of sorts, you know. So I think it was a real goal for me to be pretty outspoken when I was newly diagnosed and living a pretty public life, hoping that it would bring people some encouragement and that they would have someone to feel like they're on a journey with and what's happened is in being more open and honest and kind of outspoken about living with type one, I feel like my life's been enriched by hearing stories, feeling encouraged, you know, whether it's watching the superbowl commercial with their friends and family and feeling normalized. All of a sudden, or or, you know, whether a song that I've written I've spoken about this journey has encouraged them, those stories that in turn encouraged me and those become my role models and my heroes, my diabetes heroes.

 

Melissa Katz  15:52

Alright, so what resources should we be finding people to about the movement? Well, one enraged,

 

Nick Jonas  15:57

calm is a helpful one, lots of educational resources there. And you know, of course, there's this little thing called social media, it can be very helpful. So hashtag one range, and there will be lots of other assets, I'm sure you guys will share with them. But really, again, excited for me to start this conversation. And, you know, to be working alongside some partners who I know are passionate about, not only this initiative and program, but also doing good in the world and the nonprofit aspect of this the thing that that is most inspiring and exciting to me, outside of the obvious, which is enriching and encouraging people to you know, live with time and range, you know, that which is it's been an invaluable tool for me. So, a lot of positives here and thrilled to be a part of the conversation.

 

Melissa Katz  16:43

Well, thank you so much for the time this morning. We know how busy your schedule is, and how important the diabetes community is to us. So thanks for making it a priority.

Thanks for having me.

 

Stacey Simms  16:51

You're listening to Diabetes Connections with Stacey Simms.

As always more information at Diabetes connections.com. If you can't find the show notes on whatever podcast app you're listening to, you can find him there. If you're new, and you found us because of Nick Jonas, we are coming up to 400 episodes now. And I have a very robust search on the website. So if you want to hear about athletes, or celebrities, or technology, or just living with type one, or even type two diabetes, you can find out more at the website. And please let me know if there's an episode you would like to hear.

Listen, I'm really glad they asked a couple of my questions. And they were actually your my listeners questions about his active routine and about sleep. And about his diabetes role models. I've sent that one in too. But the questions I wish they had asked was the one I sent in about access and affordability about insulin editorializing here, obviously, but look, a huge impediment to time and range is the cost of insulin and the supply of insulin, especially here in the United States, where we have mentioned this before one in four people are rationing their insulin, I would love to see Nick Jonas, take a stand on that. I know I'm not alone, boy, he could really make a difference just in terms of public education. So you know, we'll look we'll keep pushing, we'll see what we can do there. But I do appreciate you sending me those questions.

Diabetes Connections of the group is where I do most of my communication in terms of you know, getting listener questions, finding out what you want to know more about. So please join Diabetes Connections, the group on Facebook if you haven't already.

Alright, and as I have said, Dexcom is a sponsor of the show, and we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 day sensor wear and the applicator is so easy, I haven't done one insertion since we got it Benny does everything himself. Now he's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course, we still love the alerts on the alarms, and that we can set them how we want 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, go to Diabetes connections.com and click on the Dexcom logo.

Before I let you go, just a reminder that every Wednesday live on Facebook, I'm doing in the news. It is a five or six minute roundup of all the headlines and news in the diabetes community of the past seven days that's live on Facebook at Diabetes Connections, the page and that's 430 Eastern on Wednesdays and then we turn that into a podcast episode. You can find it on Instagram and the YouTube channel as well. I'm having a lot of fun with that. And I'm working on my set on my studio. We'll see I have a green screen. You know we're working on some lighting. I don't know. It could look great. It could look very silly. I'm sure you will let me know. 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 in just a couple of days until then be kind to yourself.

 

Benny  20:11

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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