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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: Category: technology and tools
Mar 10, 2020

Lilly Diabetes announced they were getting into the pump and pen business almost two years ago. How’s it going? We get an update from Marie Schiller, Vice President of Product Development for Connected Care and Insulins at Eli Lilly – Connected Care is what they’re calling this platform of pumps and pens – now to be integrated with Dexcom.

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

We’ll also have a bit of an update on some other pump companies’ plans for the near future.. bolus from your phone?!
In TMSG a big fish, a hula hoop winner and a chance meeting over a foot?

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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 Transcript:

 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is diabetes connections with Stacey Simms.

 

Stacey Simms  0:27

This week, Eli Lilly announced they were getting into the pump and pen business almost two years ago. How's it going? We get an update. And of course I asked about price and access.

 

Marie Schiller  0:38

Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people act. So

 

Stacey Simms  0:53

that's Marie Schiller, Vice President of Product Development for connected care and insulins at Lilly We'll also have a bit of an update on some other pump companies plans for the near future. Well, let's sing from your phone in Tell me something good a big fish, a hula hoop winner, and a chance meeting over a foot. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to another week of the show. I am your host Stacey Simms, so glad to have you along for another week. As always, we aim to educate and inspire by sharing stories of connection. My son was diagnosed 13 years ago with Type One Diabetes. My husband lives with type two. I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast.

I'm excited to catch up with Lilly. I know a lot of people don't want to hear anything from them until they address the price of insulin. And I do understand that I want to be sensitive to that. And I definitely asked Marie all about that. Even though she has nothing to do with the price of insulin but she doesn't work at Lilly and this system. I can't be really separated from that, let's be honest. But I also think I have a responsibility to share what's going on in terms of diabetes technology, and Lilly plans to be a big player in this space. So that's what the interview is all about. We'll be talking about their system. We'll be talking about their partnership with Dexcom and other things as they move forward.

Before we get to that, I want to thank Kerri Sparling and the folks at children with diabetes. We replayed the interview that Kerri did with me this was on their YouTube channel and then last week in the kind of the mini episode although it wasn't really a mini we replayed the audio from that interview. It's always a little weird for me to be on the other side of the microphone, but it's always a lot of fun to I bring it up not to hammer on the interview again, if you wanted to see it or listen, you know, you know where to find it and I will link it up in this episode. But because they are doing a contest. The contest is open until March 20. And to enter you do have to email them so I will link that As well, it's over on the children with diabetes a website. But all of these links will be in the episode homepage. They're giving away a paperback of the world's worst diabetes mom and the audio version. So I'd love for you to go and enter and find out more on their websites.

Speaking of the book, I am having such a blast on the book tour that I'm doing this year. You know, we'll see how it goes. Obviously there are some health scares out there right now. And I'm not sure that all the events are going to stay as scheduled for right now. They're all on the books that's on the website as well. And if you're interested in the world's worst diabetes mom, that's an easy place to find out more but I have to share with you that I got a great note from a woman in Australia who listens to the show and you know, has read my book she bought it you can get it on Amazon really in so many countries now print on demand is absolutely amazing. And she got it in Australia and she reached out to me because her local group wants to do a bulk order. So we are doing that. And if you have a situation like that where you would like a little large number of books for your group. please reach out to me directly. You don't have to just buy it on Amazon for the full retail price. I am happy to work with you. My publisher has given me some ways to do this. That really makes sense. It's an amazing thing to think about people all over the world reading the world's worst diabetes mom. It didn't say America's worst diabetes mom. So I guess I have to stand by that now.

All right. We will have the interview with Marie Shiller from Lilly coming up in just a moment. But first let me tell you about Real Good Foods Diabetes Connections is brought to you by them. Have you tried their cauliflower crust Margarita pizza. They have a full size and a personal size as well. So yummy. It is low carb high protein real simple ingredients. And you know you gotta be careful because some cauliflower crust pizzas are made with corn starch. You know rice flowers, processed grains. And if you're looking for something that is 100% grain free and gluten free, this is what you're looking for. I love how Real Good Foods keeps creating Eating new products, they keep coming out with new yummy foods for us. It's the kind of thing where you as soon as you don't feel like cooking, sometimes you want the convenience. And when you go for convenience, you really don't want to sacrifice nutrition, right? I mean, you don't want to just pull out some junk food. I love Real Good Foods, it tastes terrific. And the people behind them are solid. They get involved in our community. They listen to what we have to say. It's really nice, find out more, go to diabetes, connections comm and click on the Real Good Foods logo.

 

My guest this week is Marie Schiller Vice President of Product Development for connected care and insolence at Lilly. Two years ago, I was part of a group of writers and reporters from the diabetes community invited to Cambridge, Massachusetts, to take a look at Lilly's entrance into the pump and pen market to give feedback on those plans and to hear from their partners. We did an episode back then and I'll link up what I and others wrote at the time. No pictures still of what they show. Very briefly that day, they showed us kind of the prototype, but it is a tiny pump. It's kind of like a fat little disc. It's much smaller than an omni pod pod. It's maybe about the size of the tee sport that tandem is coming out with. I'm actually going to talk more about that after this interview a pump update from tandem some news from Omni pod. We'll get to that after this interview, but I'll put up some photos of the T sport, but this is thinner than that the Lilly pump is just a small thin disc. It is tubed. So the idea is that you can stick it to your body or use longer tubing and put it in your pocket. We do talk about that. It'll fit in the palm of your hand very easily. Of course we do talk about the price of insulin, and what that means for access of anything coming from Philly. So here's my interview with Marie Schiller. Marie thanks for talking to me. I'm excited to catch up. It's been about almost two years since we've MIT in Cambridge, thanks for coming on the show.

 

Marie Schiller  7:02

Thanks for having me. I'm excited to be back.

 

Stacey Simms  7:05

All right, so give us the update. I know we're going to talk about the partnership with Dexcom and some other things that Lilly is working on. But when we last left this episode, the last time we talked at least in person, you over talking about the device that Lilly had been working on, can you give us an update on that

 

Marie Schiller  7:25

I can and maybe to be helpful Stacy just to remind the audience of what we've been working on. So Lilly has a personalized diabetes management system that is incorporating inform delivery devices, software and analytics. And obviously that will be combined with glucose data and other contextual information in order to hopefully to improve diabetes management. We have two parts of that system. So we obviously have a pen based platform where we'll be using our refill disposable insulin pen, with data coming in from glucose monitoring devices and be able to combine that with different elements of care in that platform. And then the pump based platform, which would be a hybrid closed loop system, integrating the the pump itself in with a continuous glucose monitoring and an algorithm as well. So that's the journey we started on. I think we were we had not just kicked off the program when we last talked a couple years ago, but it was certainly early in the development program. It's been a frankly, an awesome couple of years is advancing both of those areas we had started I know when we last talked, but with the development agreement with Dexcom, which we have continued to advance our relationship with Dexcom and now have entered into a global commercialization agreement with them. We continued our clinical trials with the pump based system we'll be talking about Some of the first clinical data will be shared this coming February at the the conference in Madrid at TCU. And on the connected pen side we have, so we secured a supplemental drug approval for the pen that will be compatible with the personalized diabetes management system. And we're in the midst of working with the FDA on the other components of the system that we will need to bring forward and launch the entirety of that integrated solution.

 

Stacey Simms  9:35

So there's a lot of moving parts, there are a lot of different things going on. You mentioned the clinical trials, and let's kind of take this step by step. I'm sure you can share the information ahead of the release. But what were you looking for this was for the pump system. Was this a safety trial? Was this an outcome trial? Can you share any information

 

Marie Schiller  9:55

for you know, I won't go into any details that we will be sharing at the conference, but As has been seen with other products going through on that hybrid closed loop system, we are focused on showing that the system is functioning accurately. So we are looking at that first stage looking at different you know, stress situations with the system making sure the system is responding as we would expect it to respond. And obviously as part of that is the safety of the system.

 

Stacey Simms  10:27

So, as we're talking about this system, what's so intriguing about it to me is that it is a pump, but it acts more like a pod. At least it did when I last saw it or I saw a mock up of it even so is it still that way it's very teeny tiny, but it it acts as a tube pump with a very small tube that goes into a traditional inset Is that still the hardware?

 

Marie Schiller  10:47

It is so we what we like to call it is that is a hybrid system meeting on the days that you want to carry it and put it in your pocket or wherever is your choice of carrying it. You could use a standard length infusion set or a long infusion set, whatever your preference, but on days that you wanted to wear it, and adhere it to your body, you could do that. And so it would still work with a standard catheter infusion set, but you would obviously be using a shorter tube in that instance, if you choose to wear it on those days.

 

Stacey Simms  11:24

You know, it's funny, Marie, I've I didn't ask this when I first saw it two years ago, and I keep thinking about it, because now tandem has a I don't know where they are in their development stage. They have the T sport which sounds very similar that they're hoping to come out with. How do you actually were these tubes, tiny tubes, pumps, the hybrid pumps on the body? Did they just kind of dangle from the tube? Do you stick them to your skin? Does it work?

 

Marie Schiller  11:47

Yeah, I can't comment on tandem. It's a great question though. Stacey, you know, obviously with our so there's an adhesive component where you are wearing the pump. It's not obviously on the infusion set right? But ours is where you would be adhering to the pump itself.

 

Stacey Simms  12:04

And my frustration was I thought you're gonna say I can't tell you anything. But that's great. There's like a sticky on the pump and it sticks to your skin. does it stick to the body? Like a? Is it like a Dexcom? sticky? Or is it like the ever since which is more like what I call a color forms? Remember those color forms? You could take them on and off and on and off? Is it more like that? Or is it once it's stuck to your skin? Then you kinda have to pry it off.

 

Marie Schiller  12:34

Yeah, I may, at this point, just pull back a little bit because I think I may be going down. I may be going down the rabbit hole as if I'm trying. I feel like I'm going to be playing a game of charades as I try to walk you through how the system works. And it may be more confusing than helpful. So yeah, as I mentioned that you have the ability to wear it and there's an adhesive system and we'll leave it at that.

 

Stacey Simms  12:59

All right. But it's very interesting. So then my next question is, do you know if Lilly is going to be developing new infusion sets? And I asked this because I've shared for years and years, and I'm not the only one, that I really think that the traditional infusion sets are the weak link of any pump. They're just not great. And I'm always hoping that somebody is going to come up with a better one. Any chance, this is part of your plan?

 

Marie Schiller  13:24

as we've talked about, look, we are looking at all components of the system. Right. And so we are starting with our core system, we're looking at all aspects of the system. I would say, you know, it's hard for me to say yes or no, on that side. I think we're looking at the need in the marketplace. Right. I think on that infusion set side. I'd be curious to sort of hear your experience with that. I think in in some of the research we've seen, it's different sort of aspects where people would say they'd like improvement. Clearly. Extended wear is something that we're hearing a lot I know jdrf and others Groups are focused on that. But what areas are high on your list

 

Stacey Simms  14:03

that they work better, that that you can push more insulin through them that they don't get kinked and they don't get occluded. And they don't need to know that they're, they're not as damaging to the skin that they're not as painful that I feel I could go on and on. But truly, I really think they're the weak link of pumping and you know that they even what was the one from BD for a while like it had a better flow, it didn't just float the bottom of the canula even to be able to rotate it there was one you used to be able to spin you know, that would go with that would turn you know, there's there's so much so sure, I'll be in a focus group anytime or recall me.

 

Marie Schiller  14:38

I'm taking furious notes here to make sure I get all of this feedback because this is exactly what we need to hear, you know, and exactly what we're excited about. I think we just continue to feel that there are so much room for improvement on these systems. Albeit we've made a ton of progress today. But these are all of the nuances right then each of us I deal with every day and why, you know, the more innovation the better and space where we can continue to look at all of these elements and make progress.

 

Stacey Simms  15:09

So let's talk about the pen system too, because that's very useful and very fascinating. The pen is, as you had already said, It is not just an insulin pen, it is part of a connected system. Can you talk a little bit about what that means? We've mentioned Dexcom. already. I assume you use your phone. You can see where you've been it recommends dosing, that kind of thing.

 

Right back to my talk with Marie but first One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It is sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips. lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to diabetes connections calm and click on the One Drop logo to learn more. Now back to Marie answering my question on what a connected system means and whether the pins help keep track of dosing

 

as we expect.

 

Marie Schiller  16:28

It does so as we mentioned, it's based on the the quick pen platform is is a core component of it. So if you look at the quick pen platform that we offer in forums and we have our current basic lar influence and humor log both in the half unit one unit and two units, and then we have our ultra rapid insulin that's under review today. So as in and I don't know what's your son ever on 10 before you move to pump,

 

Stacey Simms  16:58

he was actually uncertain Because the dosing was so teeny tiny, and they didn't even have half units, but he was on quarter units. But we have since we use pens a lot, because it's a backup for him. If he gets to fly and feels like his infusion set isn't working, he'll take a shot. And he is also a little unusual in that we use. We use a long acting shot with the pump. So he does use a pen every day.

 

Marie Schiller  17:25

Okay, well, then you're familiar with it. And I can share with you that I was a pumper for years. And now I'm back to two shots, as we all sort of go through those journeys, but what I was going to describe is when you're taking those informs, especially as you know, you're taking the long acting in the short acting. There are just some basic elements that we still don't have today, right? You're running out the door, you're trying to get your son to school or I'm trying to get to work that I did I just take that shot or not again, remember right and just some of the most the simplest aspects of being able to be like up there. If I took that dose, right, and being able to have that check in place, but there are, you know, as you move down that level of sophistication, most people on informer fire some level of glucose testing, whether that is blood glucose monitoring, or as we're doing with the continuous glucose monitors. So the idea is, is that you would have the informed data from the pen, you would have your glucose data, whether that's blood glucose or CGM data, and you would take that in integrate them into this diabetes management system that depending on what you want, is how you would interact with that system. So some would have a preference of saying, you know, when I'm doing okay, or my regimen maybe easier, I don't need as much variation. So, for me, it's a place that I can capture that data and not have to go to different places to get that data for others having some different elements of support in that system. will be beneficial, right? If you think about things on the Faisal influence side for people with type two diabetes faisel, type tration as you get started on the insulin, or maybe after I'm on insulin for a couple years, how do I make sure I'm optimizing? Right? You can go through sort of that journey and see all of these different places where how we can do better than we're doing today. And I'm honing in on the glucose data and the informed data. So we all know I sometimes say life gets in the way right exercise and food you know, all those things that are pretty standard, but for a lot of us can make the road pretty bumpy as we're out there. So you know, over time being able to get the system smarter and smarter with that exercise data and then learning system. So, you know, we all talk about the algorithms that are out today are very much rule based systems right if my glucose is going up by default Like take this action and then be informed is delivered in the future. It may be well for Marie, her level is going up at x rate. And that's, that's not good for Marie versus for Stacey, that might be okay. Because I've trended back and looked at that data and say, you know, we're going to predict that she won't get to an elevated level as an example. Right. So if you start thinking about the personalization of these algorithms over time, it will not be day one, as we all know, it's going to take a lot more research and beta for us to be able to continue to get to that ideal state.

 

Stacey Simms  20:41

So I'm trying to read between the lines. So the plan sounds like it is to launch with a more let's call it a more static algorithm. Like we just started using control IQ from tandem which is a hybrid closed loop software system. It is a great system for us so far, but it doesn't learn anything. It's probably If This Then That, but it doesn't learn my size. Okay, it's not personalized. So I assuming you're kind of saying that Lilly will launch in a similar way, but the idea would be to eventually get to a learning algorithm.

 

Marie Schiller  21:11

Yes, I think that's a fair statement.

 

Stacey Simms  21:14

All right. So let's talk about the announcement that you're gonna be working with Dexcom. Just if you could spend a minute talking about what that means. It's not exclusive as I read the release that y'all sent over. So it sounds pretty interesting. Let's start with what it means first to work with Dexcom are they making? Sometimes there's, I hear special transmitters for certain things, certain software for certain things. Is this a Lilly Dexcom? Original?

 

Marie Schiller  21:39

no meaning we are basing it off of the transmitter that Dexcom has. So we will be compatible with the G six and we'll continue to work with Dexcom in our development arrangement as they continue to iterate and we continue to iterate to make sure we've got access to each other's latest technologies right because the last thing any of us want to do in these collaborations is to be behind in generation integration, right? I mean, that's what was happening and some of the first generation systems, right, you got people still on, I think it was what g4, and they'd want to be moving to the G six, and there was no way to do those updates, or the G five. So we've established our development, work with them and ability to make sure that we can continue to be running in parallel, as each of our platforms evolve over time. So it will be based on their latest transmitter based on our latest pump in our latest pen, and be able to integrate the the CGM data from Dexcom system into the diabetes management system, where some of the functionality that I talked about before could be available.

 

Stacey Simms  22:53

So I'm always trying to read between the lines You'll have to forgive me but when I see a press release that says non exclusive, I'm always thinking, you know I don't know of too many, or any pump systems. Gosh, it's so funny to say that Marie, because there's really only a couple in the US. But I don't know if I hear we hear a lot about interoperability, but it isn't here. Yeah. So my question, I guess, is when I see now exclusive, I'm thinking, Okay, are you do you have an eye to working with other CGM companies? And is that practical in the short term? When we all know FDA approvals, things like that, you really kind of have to stick with one system, at least so far, to get it through?

 

Marie Schiller  23:29

Yeah, you know, it's an interesting way you sort of posed the question, I think, let me say big picture and then sort of dive down to where we are right now. You know, at the end of the day, we believe having access to sort of the latest and greatest technologies is really important, right. I mentioned even with dex comm that we want to be on the same innovation curve that they're on. So people using our system can have access to that. It's really important that all of us, keep pushing For this innovation, right, and the way that you do that is to make sure that I have the ability to integrate other technologies into my system. And I think both of us hold that premise that keeping as a non exclusive allows both of our team to be able to, you know, have access, or have our users of our system have access, I should say to the latest and greatest technology. We have started our program with the XCOM and are really excited about the progress. But we think it's important to make sure that we will have the opportunity to bring different technologies in for different users, even on the systems available today. Right. There are differences in the system, and people are choosing different platforms because of that. Sure.

 

Stacey Simms  24:51

Yeah, it's really interesting. I mean, I keep hearing about interoperability, which I know is going to come someday but my interpretation of that which is I always call it the Mr. Potato Head. system is not the realistic system. So I try to temper my expectations but why not? Come on? I want to mix and match as much as possible. Why not?

 

Marie Schiller  25:10

I don't know. Did you like playing Mr. Potato? I was never a huge fan.

 

Stacey Simms  25:16

It's a it's an easier thing to explain, right? Why can't I use the lead Ray? With the tandem pump? Why can't I use a Dexcom with a barefoot pen? Why can't right i mean if it works better for me and my skin and my kid and my like, why can't I and I, I get it. But at the same time, I really hope that someday we're working towards that, hey, look, it could be worse for you. They could make us play operation or perfection or something terrible like that.

 

Marie Schiller  25:39

Those are worse. Yeah. But you know it, baby. I think there are a lot of people were having that sort of turnkey solution is, you know, where it's all comes in on and I just understand it and it's all designed to work together. They prefer that and other people would would like that choice, right. So I think we're gonna probably see both of those emerge over time. And the FDA to be fair, has opened the door to that event, right? I mean, they're trying hard to separate the approval of each of the components. We saw that with the ACE ban. We've seen that with IC GM, and now with AI controller that can pass. So, you know, I think, at least from the FDA perspective, they've worked hard to try to enable some of that.

 

Stacey Simms  26:25

I agree. Alright, so from interpretability. Let's talk about the proprietary aspect of this. Because I think when a company like Lilly, that makes insulin gets involved with the hardware in which the insulin goes, a lot of questions come up, and you mentioned the quick pen. So can you just confirm again and correct me if I'm wrong? Will other insolence be able to be used in either of these systems pen or pump?

 

Marie Schiller  26:52

Yes. So on the pen side, the system is being built around our quick pen platform. So it will be a system that work with really insulin on the pump side of the equation. In addition, we'll have a first generation that will be a patient built component, but over time, that may shift as well. So on the life cycle plan for that pump, we're looking at the ability to have Lilly insulin in that system, as well.

 

Stacey Simms  27:27

Okay, so to be clear, and not say, not putting a judgement on this, but just to be clear with the idea is that this would be a proprietary pump, that Lilly would make the pump and Lilly would want its own insulin. We've been human lock used in the pump.

 

Marie Schiller  27:38

Yeah, I think the system is being designed around Lilly's insulin.

 

Stacey Simms  27:43

Alright. So you know, we've Marie, we've known each other for a while now and I know you know, this question is coming, but I think it has to be asked in a day and age where people are so angry about the pricing of insulin. Why should we get excited about systems like this when people are worried about But affording the stuff that goes in the hardware, let alone affording the hardware, whatever it is, and how great it is. There's a lot of concerns about cost. I know it's not your department, but I can't have you on and not ask about it. Can you comment on that?

 

Marie Schiller  28:14

And no and not and I appreciate you asking it. And you have no need for a while as well. So I appreciate the service candid question. Look, you know, and I've said this before, and I'll say it again, you know, we are committed to be able to let people with diabetes, access our medicines, and in the future, disconnected diabetes system that will include sort of the pen based system and the pump and other components. I know you'll be frustrated at this next part of it. But I can't fit here in sort of the position I'm in and where we all want this platform to be any, you know, give you any speculation of the details of how that will happen, or how that reimbursement will be in the marketplace. It just wouldn't be fair to you or your user's to speculate on that, except to say that we are 100% committed to making sure that that access is available. Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people access the system.

 

Stacey Simms  29:24

And I mentioned in the introduction, but you live with Type One Diabetes, I definitely have another question for you. But it just occurred to me, are you allowed to even say this, have you tried this system? Like, are you in the trial? Can you trial your own? unprepared?

 

Marie Schiller  29:38

I sure how to answer that. I have no, I'm not in the trial, but I can give you that answer. So I am not in the clinical trials that have occurred today.

 

Stacey Simms  29:50

I'll tell you as a person who doesn't have diabetes, obviously, you know, it's just something that I always wonder about when I talk to researchers or clinicians or I know there's there's obviously rules for clinical trials. But you've got to think, alright, I want to try this on myself. I know a lot of people have done that. Okay. So the real question I wanted to ask

 

Marie Schiller  30:05

is okay, I can't wait. I can't wait. That's why there's no, we're pushing hard to justice available. I, I'm waiting, like out there to make sure that I get this.

 

Stacey Simms  30:18

Alright, so I've got a difficult question. So my real question about living with type one is difficult is it right now to work at Lilly, when people are so angry, and a lot of that is directed? We've seen protests separately headquarters, you know, and again, it's not you, you're not in the price department. Even if there is one. This is not something I know you can control. But is it difficult and frustrating for you to see the problem, frankly, with insulin pricing at all of the insulin companies?

 

Marie Schiller  30:46

And the answer to that they see and I think we may have talked about this, either the last time on the phone or when I saw you it's like how do you not feel the pain in you know from people, right? I mean, this dishes, dish issues difficult issues people are dealing with. So of course, you know, what I would say is is that worse from, you know, being here? You know, I look at what we're trying to do. And And And again, I'm not the person to sort of comment on this, but it's a priority for Lilly. And I'm really proud that Lilly has made it a priority to make sure that access is there.

 

Stacey Simms  31:25

Going back to two devices that we've been talking about. I always hate to ask about timelines, but I always have to ask about timelines. Can you give us a goal timeline here? Is there any indication of when it might be submitted to the pen or the pumping, which will kind of go in first?

 

Marie Schiller  31:42

Yes. So let's talk about the pen first. So as I mentioned, and you can see on the FDA site the supplemental approval for the pen has gone through. We are working with the agency on the other components of the systems. We are not giving an update right now. on the timeline for that system, but we expect to be giving updates over the next couple of months on the pump. As I mentioned, we'll be sharing the first clinical data and our signaling that we're still over the next couple of years hoping to get that system to market

 

Stacey Simms  32:16

where we thank you so much for joining me. I know it's a difficult conversation to have when you've got, you know, a lot of things about to come out and then other things that I'm asking that aren't really your department. But I appreciate your frankness. Before I let you go as a person who lives with type one, what is it like to work in the diabetes sphere? I mean, I think part of me would be kind of tired, like my whole day is diabetes. My whole life has diabetes, but it's got to be exciting as well. What's

 

Marie Schiller  32:41

it like? It's an interesting question. For me. I just don't know any different facing effects? The answer is, I don't know my kids would probably answer the same way. I don't know what I would do with myself if I wasn't doing this all day. My weekends are spent so much in the diabetes space as well. It's just something that that is it's just a part of me, right? so much a part of all of us who are living in this space. And I'm impressed every day by all of the people working so hard to make these advancements. And it's amazing, right? As you've seen, we're actually getting some of these solutions out and reading about the improvements that are there. And I'm excited and want to keep staying focused on doing what I can to get these products out and having my team man. I mean, everybody here is just so passionate about what we're trying to do to make these advancements. So it's, um, I know it's a it's like one of those questions someone would ask what would you do if you worked with your spouse? You know? I don't wanna say I love my diabetes so much because I'm not sure I'd answer that way. Am I cursed my diabetes maybe as much as I do other things in life, but it's data reason that probably keeps That's all motivated if we know how much better we can make life.

 

Stacey Simms  34:03

Well, thank you so much for spending some time with me. I really appreciate and I hope we get a snapshot of the devices soon enough, Marie thanks again.

 

Announcer  34:15

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  34:21

Of course, more information at diabetes connections.com. I always link up a lot more info at the episode homepage and a transcript. I'll be interested to see how this episode is received. As I mentioned at the start of the show, there are some people who do not want to hear anything from Lilly, if it's not about lowering the price of insulin. And I respect that I hear that I know that there's a lot of anger in our community and a lot of frustration at all the insulin makers and you know, I do share a lot of that, but I would be curious to think if we should not be following the other technology advances that are coming out of these companies, because I'll be honest with you, I said this two years ago, I think Lilly is seeing the writing on the wall. That the price of insulin is going to be mandated to come down in the next few years. And they are, they don't wanna lose money. They want to find other ways to continue to be competitive. And I certainly don't think that insulin will be free. But I do think that going into the pen and pump business is a move on their part with an eye on the price of insulin coming down. Look, I'm not an economist. I'm baby way off base. But that is something that makes sense to me.

up next Tell me something good. And then a little bit later on. I want to talk about some other pump companies and news that came out recently, diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I just thought it was something or endo used. You can use it though both on the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. It really helps spinny and me dial back and see longer term trends and helps us not overreact to what happened for just one day or just whenever Our the overlay reports help with context of Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive for managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at diabetes connections dot com and click on the Dexcom logo.

 

I love the Tell me something good stories this week. Honestly, I love them every week, but I got a bunch that are so fun to share. And one that frankly is pretty important. Alright, so first, Candace says my son was just diagnosed January 23. This year with a hospital stay. By February 13. He was dancing away and winning a hula hoop contest at his first school dance since diagnosis. He's 11 and he was so proud of his accomplishment winning the contest. And we as parents were so happy that his diagnosis wasn't holding him back. That is so cool. I didn't Kansas for a picture shockingly, an 11 year old did not want pictures of him hula hooping to be displayed. I'm actually not sure if she had any, but we respect that we hear it. I just think it's fantastic that he did it and that he's doing so well. This soon after diagnosis way to go Candace!

Alison said this is a tiny thing. But today my child was type one went to get her foot x rayed her shirt, rode up and showed her Dexcom and the text said, Hey, do you have diabetes? I do too. Then she pulled out her pump. It was super cool. Allison says her child was diagnosed in early December. I think that's great. Is there anything better than that diabetes in the wild citing, right? You know, you're with people who get it. It's just so great.

And then this one you may have seen on social media. I posted a picture of Isabella with her fish, not her pet fish a fish she caught. Isabella is nine years old and she loves fishing with her dad and boy she beaming in this photo with a fish that's like as big as she is. Her mother, Heather says she was diagnosed with type one at age four. Again, she's nine. Heather says, I will tell you this little girl is amazing. Her dad got diagnosed with lupus almost four years ago. He is on dialysis. We are on a kidney transplant list. I'm currently trying to be his donor. And a lot goes into that. This is her and her daddy's favorite thing to do. They live life to the fullest, and nothing stops them. Heather, thank you so much for sharing this story for letting us share the picture of Isabella, you guys are carrying a heavy load right now. And I'm so glad to hear that you're finding enjoyment in things like this. It's kind of trite. As I'm hearing these words, leave my mouth. I mean, there's really not much to say when you're in a situation like that. But I'm happy to share your story. And I hope you keep us posted. Let us know what's going on. And definitely send more fish pictures. I would love to see that I really would even if we don't share them. You can definitely send them our way are posted the Facebook group.

Our final Tell me something good is a little bit of a different story. It's more of an news story. But this is really important. And I think very good news. Beyond type one announced that they are collaborating with the National Association of School nurses to raise awareness of the warning signs of type one diabetes. So this is a new collaboration that means that 10s of thousands of school nurses around the country are going to get these awareness materials from beyond type one, if you haven't seen these we did in North Carolina push a few years ago. And they're just simple and straightforward. And they tell you the signs, and they talk about what to look for. I don't think those of us in the community had any idea what DK a was what it looked like, how deadly it could be, you know, before we our children were diagnosed, right? How would you know? So this education campaign is absolutely going to save lives. Huge thanks to be on type one. And a big thanks to the Helmsley Charitable Trust which is funding it. I will keep you posted. I will put up links in the show notes on how you can get involved because you know ordinary people state to state are getting involved. We sit around my dining room table here outside of Charlotte, North Carolina and stuffing envelopes and sent them out really can make a difference. Tell me something good happens every week around here. Give me your stories post in the Facebook group, email me Stacey at diabetes dash connections dot com. I would really love to hear from you. We got to get the good news out in our community. Tell me something good.

 

All right. We're getting a little long here. But I wanted to bring you some news from the other pump companies. I know I don't usually do a news update this far down in the show, but because I put the coronavirus episode out a little early. There was some news I was going to put into that episode that has gotten pushed here. Let me get right to it. We had an earnings call from tandem. And the really interesting bits from that were that the T sport hybrid patch pump is now expected later this year, possibly probably early 2021. The CEO of tandem says they plan to file with the FDA for t sport approval. This summer with a new mobile app, which means you'll be able to bolus from your smartphone. So apparently, they're going to submit this in two different ways two different filings. One would be a separate handheld device, right like a dummy phone or a dummy controller of some kind that you'd bolus from. I'm dummy and that it doesn't do anything else but control the pump. But the other filing would be remote bulleting by the smartphone app. And apparently the CEO said they will not launch t sport until both have been okayed by the FDA. So you would have the option of using your phone or of using the singular let's call it singular controller rather than the dummy controller. So that's really exciting. I'm gonna post some pictures diabetes mine posted this update and posted some pictures of the tee sport. It is a little patch pump that can be worn on the body or it has a tube so it can be put in your pocket again. I don't know how it sticks to the body. Did you hear me talking to Maria about that? Is it reusable? Like ever since or is it like a dexcom to rip it off or a pumping set. So we'll find out more about these things as they go forward. But that was some really interesting news from tandem.

The other bit of news comes from Insulet. They are in the middle of clinical trials for horizon, they had hoped to be filing for that approval. This summer horizon is the hybrid closed loop for the Omni pod. They did have a software issue. That means they are pausing the pivotal study, and it's going to delay things, not really sure how long, of course, they're really hoping that it won't be too long, you know, maybe a month or so. But they are now pushing the anticipated launch of horizon to early 2021. And I know there's a lot of disappointment because people really want this system. I will say to you that tandem had a similar issue with their software during the last pivotal trial for control IQ. It was very quickly fixed. I don't think it affected the timeline that much. Maybe it was just a month, but it still hit its goal of the end of the year. So hopefully Omni pod insolate can get back on this and get back to their timeline but I will link to More information on that, because I know these things just cannot come to market soon enough.

tank you for staying with me. This was a long bit after the interview and I appreciate it, but I wanted to get some information out there. I really appreciate you listening. There's a lot going on right now. All right, I'm gonna stop right here and thank my editor John Bukenas from audio editing solutions. If you have an audio project, I highly recommend john, you know, if he puts up with me, and my rambling that he can do wonders for you. All kidding aside, john is great. I love working with him. He never asked me to say anything in the show. But he really is such a strong part of what makes this podcast successful. And boy, is he nice to me and doesn't leave in all of my papers. So thank you, john. And thank you so much for listening. I'm Stacey Simms. I will see you back here next week.

 

Benny  43:55

Diabetes Connections is a production of Stacey Simms media. All right. reserved all wrongs avenged

 

Transcribed by https://otter.ai

Feb 25, 2020

This week, catching up with Dexcom CEO Kevin Sayer – overseas at the ATTD conference. We talk about everything from a G7 update, new partnerships, in-app notifications and those sensors that you’ve probably heard about getting stuck. We also talk about competition, customer service and a lot more.

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good, a Miss America contestant with T1D has pretty stellar week – and it has nothing to do with her crown and sash.. this is about engineering .

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

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

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Episode transcription (we're in beta so please excuse grammar, spelling, punctuation and the fact that AI can't figure out Dexcom speak)

Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:21
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:26
This week, catching up with Dexcom CEO Kevin Sarah overseas at a big diabetes Technology Conference. We talk about everything from the g7 new partnerships in app notifications. And those stuck sensors that you've probably heard about or seen on social media.

Kevin Sayer 0:45
There's a freak out factor but Let's face it, if that's your last sensor, that's not fair. And that's not right. So we noted it, we've seen it, we've read it. We've done everything we can to mitigate it. I'm very comfortable we’ll see this come down.

Stacey Simms 0:57
We also talk about upcoming CGM Competition, customer service, direct to Apple Watch and a lot more.
in Tell me something good on Miss America contestant with Type 1 diabetes has a pretty stellar week and it has nothing to do with her crown and sash. This is about engineering. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
Welcome to another week of Diabetes Connections. I am your host Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, just before he turned two. That was more than 13 years ago. My husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and TV news. And that's how you get the podcast. longtime listeners know what the show is all about. letting some new people know because let's face it anytime we talked to dexcom or talk about anything New technology, we get a lot of new listeners. So welcome!
If you've come for that, I hope you stick around and go through our almost 300 past episodes. Now, you can find everything at Diabetes Connections. com, we have a very robust search, there's the regular old search box on the upper right hand side. Or if you click on the episode page, there is a way to sort them by category. So if you want to see all the technology episodes are all the ones with athletes are all the ones about family or advocacy, you can sort them that way as well.
Before we talk to Kevin Sayer, it is important to point out that as you heard the very top Dexcom is a sponsor of this show, and has been for a few years now. Our agreement means I talk about them in a commercial, which you will hear later on the show. But it doesn't mean that I don't get to ask hard questions. I really try to serve you as you listen, I try to serve you first. And if I'm not doing that this show doesn't work ethically. It's really important to disclose these things. And I always get upset when other either podcasters or bloggers or speakers don't do that. If you're a longtime listener, you understand how it works around here. Hopefully, I am doing a good job of serving you. But just to be clear, the advertisers in the show pay for the advertisement. And I believe in them, and I'm glad they're here. But they do not tell me what to say, in the show anywhere else on social media, or when I write a blog, that sort of thing. It's not that kind of relationship.
So we're talking to Kevin coming up in just a couple of minutes asking your questions. I took a whole bunch of them from the Facebook group. We do have a Facebook group, it is Diabetes Connections, the group, very original, but very easy to find that way I thought, and that's really the best way if you want to ask these newsmakers questions I usually ask in the group and you can always contact me that way. That's coming up in just a minute.
But first Diabetes Connections is brought to you by another sponsor, One Drop. It is so nice to find a diabetes product that Not only does what you need, but also fits in perfectly with your life. One Drop is that is the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, take as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections calm and click on the One Drop logo.
My guest this week is Dexcom CEO Kevin Sayer. He is joining us from the International Conference on Advanced Technologies and Treatments for diabetes, which this year is in Madrid. So as we're talking to Spain here, please pardon any glitches or weird phone sounds that might pop up but hopefully all will go away. Kevin, thank you so much for joining me. I appreciate it.

Kevin Sayer 5:02
Oh, thank you, Stacey. It's good to be back again.

Stacey Simms 5:05
All right, let's start with the news that has already come out of the conference. And that is this official partnership with Insulet. With Omnipod. Can you start by talking a little bit about? And I'll be honest with you, I'm a little confused. I they're already in clinical trials for Horizon. I thought this agreement was a done deal. Tell us about the agreement with Insulet.

Kevin Sayer 5:23
Actually, we've been working with Insulet since 2007. This is a long time relationship. And most of our work in the past was then under the form of a development agreement to jointly develop products together. The announcement this week is the culmination of all that development work over time to basically say, look, we've entered into an agreement whereby we know how we're going to commercialize our joint systems. And also, as we have entered into these development agreements with our partners, we typically do it one generation of technology at a time, we made the g7 system available to the Insulet team as well. So once they get a rising launch with G6, as the G7 system gets ready to go, it will be will be able to migrate over to that system as well. So that that was the purpose of this announcement and the other. You know, the other reason for it, there is so much going on in the interoperability world right now. We index coms as well, it's important that everybody knows that we have these relationships. And this relationship is very close and near and dear to us. So we therefore thought the announcement was good on something we have been working on for a very long time.

Stacey Simms 6:29
When we look at interoperability, you've mentioned already G6, G7. Can you just take a step back and give us a little bit of an update on that so Insulet will go with their horizon, which is not out yet. That'll be g six and G seven tandem with control IQ also g six mg seven

Kevin Sayer 6:50
Tandem has access to G6 right now. We've not yet signed a G7 agreement with them, but we'd expect to do that and then they're very near future. We've also signed a relationship with Lily and their connected pens and their platforms, whereby they'll have access to G six and G seven as well. We have several other smaller relationships with some of the smaller pump companies or others where they have to six, access not a lot of g7. At this point in time, we have to look at that strategy over time and decide what approach we're going to take with partners. The interoperability world creates some very interesting business scenarios, which I wish I knew the answer to all of that, but it ranges anywhere from let's say, one person and go or two people and just work with them to maybe a few or just open it up to everybody. And I think it evolves over time. For us right now. We think it's important that we support certainly as many as we can, but offer even a heightened level of support to those who are going to have commercial offerings in the near future as speaking towards Tandem and Insulet. In particular, the control IQ uses g six and we read certainly very good things about that is that since we've been out there. And so we'll work with them all. This is going to evolve over time. All the answers are available. Sure.

Stacey Simms 8:07
Okay, so let's talk about control IQ quickly, because that's been in the news quite a lot lately. We just started it about three to four weeks ago. It's been working very well for my son, but Dexcom owns the algorithm, but used to be called or maybe still is type zero.

Kevin Sayer 8:23
So let me give a little clarity on the fundamental or the underlying science and the calculations behind the algorithm are in fact, developed a type zero and owned by Dexcom. Tandem has filed that as their controller. They have done some user experiences some modifications as to how it is integrate into their pump, but the fundamental algorithm is owned by Dexcom. And type zero. That's correct. So the sensor in the algorithm driving it are Dexcom properties.

Stacey Simms 8:49
This is a little bit more esoteric than I expected to get in so quickly here, but what's it like being in the algorithm business and Do you have plans to perhaps get some other algorithms in Your tool kit, if you're like us, not the only one out there

Kevin Sayer 9:02
know when we've looked at those, and we love our team in Charlottesville, we have some decisions to make there too. So what we're going to do long term with the algorithm and how available we're going to make it, it is a great business opportunity is a great skill set for us to have as well. With that team in Virginia, we've learned a lot about our sensor, their opportunities to take the science has been developed for automated insulin delivery and apply it to decision support for those who really don't want to use a pump all the time that we could possibly provide some good decisions along the way that would help them better manage their diabetes in the manner that they want to. I think there are a lot of opportunities to do that here.
What we're going to let it play out, we're still early on in in that one. They're certainly next generation algorithm to come after they control iq version of it, which is kind of a step up or there's even less user interaction where you possibly won't have to announce all the meals and Everything that will be a little more aggressive on treatment and require a little less user interaction. And we got to figure out what our strategy is going to be to do that and how we're going to go with that.
So we're kind of in the algorithm business, but sensors are still our biggest, you know, that's where we pay our bills, the most important thing for us, when we saw that asset was kind of available out there that we felt it was something that we just needed to control. And then we're thrilled with it. And quite frankly, it's worked out well for me, too, because they're right away from us in San Diego. And we can very much collaborate very quickly, since we have access to those scientists and they have access to us.

Stacey Simms 10:39
So let's talk about the g7. We've talked about it before. Can you give us an update, what the features will be? What makes it different and the timeline?

Kevin Sayer 10:49
Well, as we've talked, I'll start with the timeline, as we've said in our public statements, will be starting a typical study this year. Our hope is have a limited launch in 2020 The limited line for that have a significant impact on our financial results. So in the public world, we don't say a whole lot about the limited launch, we intend to do the full ride in 2021. And I don't have a perfect time frame yet, I will tell you, the mitigating factor will more than likely be our ability to scale it up. As you know, from your community. We learned a lot in 2019, about scale and all those lessons were not necessarily positive, the Dexcom. But they were good learnings. It was hard, we underestimated some things when we rolled to six out the way we did and I don't know that even if we delayed three or four months like to its original plan launch date, that we would have solved those problems because the demand for G six was so much higher than we anticipated.
It would be you know, in the past, we could overcome 20% more demand than we have because we didn’t fill that many sensors. So yeah, if you’re manufacturing 2 million sensors. We can come up with another 200, 300 thousand, that's not a problem. But when you use the numbers we're at today. becomes a problem. So if anything, we learned anything from the big six launch, we are going to be prepared to scale g7 when we launch it, because when it comes, nobody's going back, just like nobody's going back to G five g six
features of the product, as we've talked about before it much thinner, smaller profile, disposable electronics. So there's not a transmitter component anymore. There's no assembly of anything before you put it on, you literally take it out of the box, press the insertion device into your skin and hit the button and you're gone much smaller plastics profile. from an environmental perspective, patients will be glad to know that we get that comment frequently on our current system about all the plastics length of where we're shooting for an extended wear period.
I have to tell you, we will balance the extended wear period against the accuracy and performance of the system with respect to iCGM standards. We know we have to have this as an iCGM to talk to these automated delivery systems and sometimes you make trades offs. Length of wear versus accuracy, as most people know, at some point in time, the longer you wear a sensors, the more difficult it is for to perform perfectly. One of the things that I often that isn't understood about g six, I can give the perfect example, these standards set by the FDA on iCGM are difficult. They're not simple to meet. And literally the way that g six algorithm works is if through our and our analytics, we look at the sensor signal and determine that that sensor is about to become less accurate than it should be, under iCGM rules, we turn it off. So there's a perceived lack of reliability from some of our patients on the sensor, when in fact that's not the case at all. We're turning it off intentionally.
And that's very often associated with physiology. You know, people's bodies are different, and even sensor sessions can be different based on how much activity you have or where, the place you insert the sensor. So we're hoping for an extended To 15 day, where it certainly wouldn't be less than 10. We will go either way, but we need to make sure we meet the criteria. The sensor is much shorter than g six. So it will be a shorter sensor from our user experience so far and our preclinical work we've had nothing but great feedback on that.

Stacey Simms 14:17
What does that mean? Is it a shorter wire or a shorter device, smaller, shorter wire

Kevin Sayer 14:22
Shorter wire with the direct insert, not angle, but it is straight in but it's very, very short.

Stacey Simms 14:33
More to come on the g7 and many other Dexcom issues. But first Diabetes Connections is brought to you by Real Good Foods, good foods, and their philosophy is all about keeping it real with food with community and with each other. And if you go on their website, you can find out so much more about the product real food, high protein, it's not about chemically made protein powders. This is about food, chicken cheese Right, low carb, grain free and zero added sugar. They keep adding products. We are big fans of the original pizza and the poppers but they've added a breakfast sandwiches with sausage or with bacon, cauliflower crust pizzas, chicken alfredo, other Italian entrees. They just keep adding more great stuff, find out more, go to Diabetes Connections calm and click on the Real Good Foods logo. Now back to my interview with Kevin and we were talking about the g7.

You mentioned the the longer were balanced with their performance Do you expect the g7 to perform differently to perform I hate to say better but to use the criteria you were talking about with the iCGM? Do you expect fewer issues with either Physiology or the sensor sensing that something is wrong and then turning off.

Kevin Sayer 15:57
That is our hope and our belief? We have learned So much from G six, as to what we can improve and make better It's been one of the scientists said to me the other day, he feels like he's working in a semiconductor factory. We're learning that much about sensors these days, as we're preparing for this setting to launch this product, we may not even be able to get all the things we've learned into the first version. But I think there'll be a couple of iterations whereby I know the extended wear will come and I know that that the reliability will be there. One of the things that we put around ourselves as a criteria is to significantly improve the reliability percentages. And we were experiencing on G six today, both on G six going forward and on g7. It just doesn't work. Patients have to return to the sensors, because they fall off or don't last long enough. We have to make that experience more consistent. So we're very focused on that. Not just with you seven, but with the six improvements as well.

Stacey Simms 16:51
All right, this next one, I just have to get it out. Kevin, I feel like a broken record. But can we talk about direct to watch what's going on? I know there's been a lot of holdups but is that something that’s happening?

Kevin Sayer 17:03
No, and we're working on it I appreciate you asking again, is technologically very difficult a Bluetooth protocols on the watch are not the same as the phone. And I go down to r&d and I asked the guys a question, every time I talk to you tell me what's going on. And it's not only difficult from the Bluetooth perspective, there's an experience perspective, it's also difficult with respect to the alerts Can we make it worse, audibly loud enough for by somebody can hear them? What happens when you take your watch and you put it on your charger and it's your primary displaying walk away, there's some where issues and some issues around the watch to create a little bit different experience and required a bit more fun on our part, and quite candidly, a lot more complex engineering. And we have done firmware updates to get us closer there.
When we're done. We'll announce it. The other thing I would tell you is even if we weren't finished today, I wouldn't tell anybody I'm not trying to tell anybody till every transmitter in the field is was compatible because it will be different. version of the firmware on the transmitter. And while it was still be seamless on your iPhone or your Android phone, it will look the same if we announced direct to watch, and then we have a bunch of transmitters in the field that don't go director will watch, we're creating a tech support issue that will just again lead to patients being upset. So we're working on it, it's just a ways out and all these opportunities or engineering, things we have to get done are not just caused by Dexcom, either. There's Apple things that we just have to understand better. They work very closely with this. They're very helpful. It's just taking a lot of time. Sure.

Stacey Simms 18:34
Well, thanks for the update on that. It's nice to know, you know, there's always a fear that these features may not get rolled out right. There's always a fear that and I know you know, this is the type one community that we see CGM makers and other technology companies looking at the the enormous type 2 market which has very different needs very different wants, and that we will be left behind so the watches I mean, it's a little bit dramatic to put it in that way. Looking at direct watch, but you understand what I'm talking about, right?

Kevin Sayer 19:03
Yeah, I do. And I let me respond to that a little bit, please do. You're right. There are a lot more people with type two diabetes, type 1 diabetes, but there is nothing that we do for people with type 1 diabetes, that can't create a great experience for people with type two diabetes. I would argue that the good things we do for type one patients translate better over to type two then heading down a path with lesser accuracy, or lesser connectivity or fewer features. You're much smarter to make a product performance is superb level and then make the changes software related rather than then system related. And rather than sensor related, which is the way we're doing it now.
Or you know, there was a big fear that g7 would be a type two product only hired that from a lot of patients because barely our partner been a great partner has been very much focused on type two where they're on duo, a managed diabetes management program, but that's not the case. We We will launch our g7 system with his ice ice jam label current plans are a legit person in the type one space. After that, even with G six, we can adapt the G six platform to a type two patient that has a different software experience. It doesn't detract at all from what we do for our core market. And where we sit today, the most important thing to do is to get a like if you get accuracy and performance and reliability and consistency, you can take that anywhere. And that meets our type one patients need and will also gives us the business flexibility that we need to go forward. But we're not going to do that if we were looking at something for another market.
And I'm speaking way out in the future. today. It might be another platform that would measure multiple analyze that wouldn't have ice jam accuracy for glucose, but you'd have some combination of pick for analytics glucose, ketones, lactic acid, some other one where it's maybe 20% lack less accurate all four but you get a picture of everything. That's more of a diagnostic As we look at sensors in the future, that's something we would consider. But that's, you know, that's advanced r&d and something that we would look at. We don't have an intention of going a different direction right now. We believe that the features we have we can migrate to type two without compromising our current patient base.

Stacey Simms 21:18
All right, let's talk about some specific type one stuff. And let's talk about following up. And no pun intended there. I apologize on the share and follow issues from late last year, you put out a very sincere apology, you really seem to have taken some steps. I appreciate that. I'm sure it couldn't have been too easy to put that video out, and we appreciate it.

Kevin Sayer 21:40
But no, actually, I didn't tell you that that did not bother me at all. We couldn't put it out until we knew the answers. But that's the way we run this company. And that's the way I will always behave. If we do something that doesn't work. You own it. You don't hide and I wanted to do the video of the day with day one and Gemma calming me down, I wanted to write a letter or reduce something I was wasn't happy that we could not go faster. But now we will always behave that way will never behave any differently.

Stacey Simms 22:13
I have some questions. Go ahead. Alright. Alright. So my first one is, you've updated the website and I'll put a link in the show notes where people can go to check in just last week, there were a couple of issues that were resolved quickly. But I noticed that what happened to me I'll give you my personal story. I noticed on my follow app for my son that we had lost signal, there was a brief notification, I apologize. I can't remember what it said. But something like you know, server error, but something came up a little teeny red line on the app. I cleared it without even looking at it too closely. And I went on my way because I don't My son is 15 I don't look at the follow up as much as some other parents do. But then on a Facebook group, someone said go and check the Dexcom page because They're updating the situation there is an issue. Great. So we all went. But my first question is, you will have announced, I believe that you're working on push notifications of some kind, because it didn't occur to me and maybe shame on me to go to the website. So can you talk about the timeline for that and what those in app notifications will be?

Kevin Sayer 23:19
Sure. But let's go back a step we said and I said in the video, two things we're working on it immediately is a server status page and a product status page on our on our website. So you can go to the Dexcom website, and you can see how the system is functioning. And you can see that clarity is functioning Share and Follow how they're functioning, and we give an update to those in real time, will then implement before in the first half of the year, we're two months into the year almost before the end of June, we will have in app messaging to whereby if there is a share or follow or clarity or whatever issue we can send a message directly to the patient and are the followers servers are down, this is what's going on and it will come in the app won't come through text messaging yet. That'd be something we would do a little bit later. And in all fairness, I don't know that we have everybody's phone numbers to whereby we can push text, but we can't push to the app into the app users. So that'll be here by by mid June.
As far as anything going on Recently, there were a couple times when the status page was yellow. And they worked through those quite quickly learning from what's gone on in the past and got that resolved. And we're now establishing the boundaries for what example what yellow server status means, on our webpage. Because when we started this and just adding totally, one of the the apps had yellow and it's happened to two clinics in the whole country. But since it happened to two clinics, we made it yellow, just in case it happened anyplace else on reality. That was the two words had happened and we dealt with it so we're being rather cautious is causing anything that we We will make it yellow over time, we'll put, you know tighter boundaries around that. But we will make it yellow. We'll work through the issues. We've improved our internal communications, I knew something was going on from the minute that thing went yellow, I was getting notifications. And I was I was traveling, so it's going much better. And we'll build a structure up and continue to make it better. That's all I can tell you. So we'll keep improving.

Stacey Simms 25:24
And I know that you'll be researching this, but I'll give you some patient feedback real quick is that please don't text me. You don't need my phone number in app notification.

Kevin Sayer 25:34
Okay. Yeah, I would rather not understand. balance that with everybody else because
you're catching a flight for the airport, what happens? You get a text message. So the expectation since we're on your phone is we have the same infrastructure we just don't

Stacey Simms 25:53
do what I don't get a text message from the airline. I get a notification from the app. It shows up on my similarly you get a text from Because you probably,

Kevin Sayer 26:01
I guess it depends I Yeah, I know. Anyway, you have to be more like everything else that people experience.

Stacey Simms 26:08
Exactly. Okay, so I have a couple of questions. Many of these questions that I've asked have actually already come from my listeners. Of course, we all have a lot of the same questions. But here are a few that people sent in. Rachel, as we're staying here on the follow up. Rachel wanted to know, if you're still working on having the follow app getting same notifications as the primary app, because all of us parents, especially with older kids, now, we never know when the sensors is expiring when the transmitters expiring, is there any work being done to get the follow up to be a little bit more robust for parents work any caregiver?

Kevin Sayer 26:43
Yeah, we're continuing to work on the follow up and add add more to it. I think it'll be continual development cycle and will continue to add more. I will tell you from the teenager or the college students share a perspective the last thing they want is their parents. Getting The alerts from their app. I know that firsthand, because I talked to a couple of No, no, no, no. And so we try and balance it all. We will make the the share system more robust as time goes on. Because if we learned anything thing from the server outage, we learned how important share was. It is very important to everybody.

Stacey Simms 27:19
Yeah. And all due respect, when you have the first update, when you could make it for 10 followers. You know, not every kid wants everybody their school following them either. I mean, but these have to be parental decisions with good education. So, you know, I think I get what you're saying. But these are all, let's just see, these are wonderful problems technology has created. I try to leave them alone. Alright, so.
Okay, the next question came from a few people. And Gosh, I don't know if you can answer this, because this is more anecdotal, but we've been using the G six since May or June of 2018. And it seems to me Just in the last two months, I have seen pictures and heard anecdotal reports of sensors getting stuck at insertion to the point where in my smaller I have a smaller local Facebook group. People are posting the things they have used to whack the sensor because you're supposed to, apparently on Facebook, you whack it with a wooden spoon to get it to release or there might be a button underneath that you can push a pin in. But this is something that we haven't experienced, but that I've seen in the last two months. Are you aware of this? Is this an actual problem that

Kevin Sayer 28:33
just so you understand, we monitor every complaint and everything that's coming very closely, we have seen a rise in those instances. Fortunately, it doesn't result in a patient getting bad data or anything bad happen. We just have to replace their sensor. We've identified the root cause of that and we've taken mitigations to correct that and that should come down going forward. We have this this Not this specific issue, but the fact is when we see things rise in the complaint base, we have a group of sustaining engineering group that jumps on these issues and determines where they came from. we've analyzed this, this specifically and we've implemented improvements and you will see that decreasing significantly over the next several months that should go away.

Stacey Simms 29:20
Okay, cuz I know the good news is there isn't as readings issue, but the bad news is there's a freakout issue.

Kevin Sayer 29:26
There's a freakout issue and let's face it, if that's your last sensor, yeah, that's not fair. And that's not right. So we notice it, we've seen it we've read it and we have we've done everything we can to mitigate that I'm pretty I'm very comfortable we’ll see this come down.

Stacey Simms 29:41
Okay, but I'm glad to hear that. Is there actual advice of what to do if it happens? Is there the release underneath? I'm assume whack it with a spoon isn't something that you recommend?

Kevin Sayer 29:54
Now we’re in anecdotes and I can’t speak to that. The easiest thing is call us and we’ll get us a new sensor as fast as we can.

Stacey Simms 30:02
I gotta ask. I got a couple of questions from listeners who are asking about outside the United States. Obviously our listeners are USA centric, but there are many, many, many in the UK and Australia and Canada. Can you talk a little bit about jif six and G seven, internationally.

Kevin Sayer 30:19
So g six is in Canada now. We launched it there in the fourth quarter. We also launched in Canada, any commerce platform reimbursement is not brought in Canada. Many of the patients have to cover the costs on their own. So we have tried to make it easier and Canada is the first place we've ever had an e commerce platform where patients can literally go online and buy their sensitive transmitters have them shipped directly to them without having to deal with this has been a very efficient and a tremendous growth driver up there. A lot more people are getting access to speech him in Canada because of that. That's been a great experience. g six has been available in the UK for quite some time. And again, the UK business is I want to say three reacts when it was two years ago. So we're doing very well there also, reimbursement is coming, but it is sporadic. It isn't everywhere. We spent a lot of time with government authorities pleading our case, the importance of CGM, and we found that educational process great. they've jumped on board and learn a lot Australia, g six is coming. I know it's not broadly rolled out, but it will certainly be a 2020 product there and should do very well in Australia as well. Government reimbursement, for CGM in Australia has gone very well. Here today. It is growing nicely, are all US strategy. We really have three pillars that we're working on, you know, first those countries we're reversing, that is good. We gotta broaden there. We have to increase access in countries where reimbursement is sporadic. And the UK, Spain where I am Italy, some of those places is very sporadic. Some regions it's reimbursed others it's not. Yeah. And then there is where we don't play it all. Yeah, we're very well In Central and South America, or Mexico, where we've got a filing in Japan virtue six, but we're not launched there yet.

Stacey Simms 32:08
I'm gonna start this question right here. And it's my fault because I'm running over time. And I want to get one more question in. So I apologize. One more question. Okay, so diabetes mine ran a column recently that was headlined 39 potential new continuous glucose monitors for diabetes. Now a lot of these are pie in the sky. We know many won't come to market, but they went through and listed a bunch of new CGM that are going to be your competition. My last question is about customer service. Talk to us about how you're going to improve, maintain, really try to over serve in terms of customer service, because you know, that in the last year or two as the launch of the G six was a challenge, because of supply, customer service has got to be a challenge too. So my last question is, assure us that it's going to be okay from a customer service standpoint.

Kevin Sayer 32:58
Well for us, it will be Well, I will tell you the one thing we've learned this year, more than anything else is scale. It's very difficult. And I just throw some numbers at you. Two years ago, we announced that the JPMorgan conference we had 270,000 active patients. That means we have patients that we know are buying and using sensors. Okay. I announced in an earnings call a week ago that we have 650,000 active using sensor patients. You can imagine the number of sensors we have to produce above and beyond that the number of phone calls we take, we will make customer service priority but scale is a huge challenge here and it is not cheap. We will spend hundreds of millions of dollars getting the g7 factory up and running before you see a sensor. We will invest hundreds of millions of dollars in G six at the same time, getting the factory automated getting the sensors more reliable. At the same time as we looked at the customer experience. There's a lot of things we can do.
We have formed an entire customer experience Team at Dexcom over the past 12 months To go back and look at how we interact with people is 43 screens to start up the G six, new from scratch. Why is it 43 screens was because it was 43 screens and we did seven plus or G for whatever, we did the same thing. We're go back and re evaluating all those things to make it easier. I believe also on the customer service side, we do need to get better. But we need to get better a couple of ways. Product reliability is the first thing if we make it so you never have to call them customer service gets that much easier. But inevitably patients are going to, I believe personally that software can alleviate a lot of customer concerns. As we look to the future we look at putting tech support in the app to whereby I'll give you an example if your sensor poops out at eight days, it says Hey, your sensor quantitate days hit yes and we'll send you a new one. We're looking at things like this to make it much easier for our patients to work with us. We We purposely went offshore to set up a customer service center because quite frankly, we could not hire enough resources here to Do so that is going better as well on the distribution channel and make it simpler. We're going to the drugstore with future products and moving g six there. So there's not as much interaction as well. But I can tell you the customer service piece is every bit as hard if not harder than the technology piece. And we take it that seriously and we will over the next several years.

Stacey Simms 35:18
Seven, thank you so much for spending some time with me. I apologize to your people because I kept you too long. But I always appreciate talking with you.

Kevin Sayer 35:25
Thank you very much.

Unknown Speaker 35:32
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 35:38
I couldn't get to everybody's questions from the Facebook group. I apologize for that. But as you heard, we ran out of time he was doing back to back to back interviews. I don't know who was next in the queue. I'm sorry. I did make him a couple of minutes late. But just a couple of quick thoughts on on my talk with Kevin they're listening back and I do listen back to almost every interview before we air it. I sounded so offended about the text messages. Do not like that I don't know about you. I want text messages to be from my family, friends and emergencies. I'll take text messages from school, and maybe some alerts. But I want my apps to notify me through the app. And I want to be able to opt in and out of that. I know a lot of people disagree. You know, if you listen to the show for a long time, we don't use share and follow like a lot of parents, I have never let any school personnel follow my kid. We do not see the need, but that is us. So you know, I understand Dexcom has to do its market research and make everybody as happy as they can.
The other thing that occurred to me is that when he talked about going direct to watch, and not announcing it, right, waiting till all the transmitters are out there and then announcing it. My first thought was and so many of us who listen are part of the DIY community. I don't know what you do or how you do it. But the first thing that occurred to me was it's going to take five minutes for these DIY folks to figure out that different transmitters are out there. So I'm relying on you to let us all know because I have a feeling As soon as they start shipping whenever that is and he didn't indicate when, you know, I mean really how long it's going to take people to notice that it's direct to watch because I know there are people out there who every time they get a new transmitter their check
up next, tell me something good with one of my favorite past guests, Sierra Santa said, we will tell you what she is up to now she was in the Miss America Pageant just a few years back. But first, as I mentioned, Diabetes Connections is brought to you by Dexcom. And here's what I have to say about Basal IQ. Now, you know, we switched over to control IQ. But the first iteration of this the first software was basal IQ, the Dexcom g six tandem pumps software program. And when we got it, we started doing less work for better results. Should I say that again? less work, better results with diabetes. Vinny always liked seeing his CGM on his pump. But you know, before this change that was really just kind of a cool feature. I mean, he really didn't pull this pump out just to check a CGM. He looked at his phone, but there was some serious sauce and the basal IQ that kept many more steady. His timing range increased significantly when we started on basal IQ. And his agency, you know, we don't share specific numbers, but not only did it come down, it stayed down. It has been the same, really for more than a year. Now, as I think about it, it's just been great. Of course, individual results may vary. To learn more, just go to diabetes, connections dot com and click on the Dexcom logo.

Right, tell me something good. Really My favorite part of every show. Send me your good news stories for those of you not familiar with Sierra Sandison, and I think most of you probably are, she was in the Miss America Pageant in 2014. I had to look that up because I can't believe it's it's been that long already. But she went on stage first in the Miss Idaho pageant in July of 2014, with her insulin pump, clipped to her bikini bottom, you know, when they had the swimwear competition, and then she created the hashtag Show me your pump, which went viral. And I didn't know this till recently, it was NPR as most popular online story that year. Well, then she walked the runway again at the Miss America Pageant with the insulin pump again on her bathing suit. And you know, we all went bananas.
Well, since then Sierra has gone back to school. She's at Boise State University. She's at the College of Engineering there. And last week, she won her team. She's on a team for this, she won invent for the planet. This is a competition where engineering teams come up with inventions and solutions to make the world's a better place. So they only had 48 hours to do this. It's a pretty wild competition. I will link up more information about it so you can see exactly what happened there. And I'll put some pictures in the Facebook group too. But it's a team looks like a team of five people and Sierra posted. We slaved away at the 48 hour event for the planet competition this weekend and it paid off. We had so much fun and so little sleep, but then it gets even better. Couple of days later, she was recognized by the Idaho Society of Professional Engineers. As the number one student in her class of mechanical engineers, she writes, I am so humbled and still in shock this week seems too good to be true. Thank you to everyone who helped me get to where I am today. I hope to make you proud and keep wearing pink while doing it.
Every time I talked to Sierra, you know, it's easy to forget that she is brilliant, right? We look at the bathing suit, which is how most of us first saw her and we're distracted by that. I mean, I'll be honest with you. When I look at Sierra, I'm always thinking about how bad my hair looks because she always looks gorgeous. Her hair looks great. Her makeup looks great. I have joked with her about setting her up to do a clinic for moms at like a friends for life conference that because we all need to walk around with a ton of makeup. I don't know she doesn't all the time either. Just because it's fun, right? It would be kind of fun to learn how to do pageant makeup like that. I'm getting way off topic, but it's So easy to forget when a woman is beautiful that she is also brilliant. And I think that that is so important to keep in mind. And I'm so thrilled that she is so far forward in sharing all of these accomplishments and not compromising what she enjoys, which seems to be engineering and wearing pink and looking fabulous. So Sierra, thanks for continuing to include us in your journey. I cannot wait to see what you do next. Just let us know when you're taking over the world who would appreciate a little bit of a heads up
if you have a Tell me something good. Please send it my way. You can email it to me Stacy at Diabetes Connections. com reach out through social media the Facebook group is a really easy way to do it every once in a while I'll post and ask and other Facebook groups but please seek me out I would love to hear from you. Help me spread the Good News in our community.
As this episode goes live, it is the last week of February I don't know January dragged by February flew by I'm afraid to The page to March that we have a lot going on. I have three appearances for the book tour. I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then over to Indianapolis, for the friends for life conference there. I am getting requests for the fall already definitely booking things in September. I think I have something in December already. So if you'd like me to come speak to your group, reach out. I'm trying not to do too many of these a month. I'm trying not to travel every single weekend because I still do have Benny at home even though my daughter's in college. So it's a lot of balancing juggling going on, but I'm loving every minute of it. Our next episode is coming up on Thursday, I'm going to be talking about a little bit of a Twitter kerfuffle. I don't know if any of you saw this if you're on Twitter, but there was a bit of a disagreement started by an eye doctor, a disagreement between how many doctors see their duty to give patients a wake up call and how people with diabetes actually view that wake up call and a real big gulf between these two groups on this One Twitter chat, unfortunately. So I want to share that with you and maybe how we can get our doctors to listen a little bit more. Alright. Alright, thanks as always to my editor john Kenneth from audio editing solutions. Thank you so much for listening. Joining me, please spread the word about this show. Word of mouth is the best way to grow a show like this. We can get more good information into the hands of people who really need it. So post it on your Facebook page, tell a friend who's touched by diabetes about it. I'd really appreciate it. I'm Stacey Simms. I'll see you back here on Thursday.

Unknown Speaker 43:37
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged

Transcribed by https://otter.ai

Feb 6, 2020

Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this?

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

Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind.

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Episode Transcription 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes.  Available as a paperback eBook and audiobook. Learn more at Amazon or diabetes dash connections.com.

 

Announcer  0:15

This is diabetes connections with Stacey Sims.

 

Stacey Simms  0:26

Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us.

So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this.

If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. And I think this story will highlight really just What a dingaling I can be sometimes, because this stuff isn't easy, right? And we're always trying to improve. So let me tell you the story, and then you tell me how to improve.

Alright, so this happened, as I said, in early December, so almost two months ago now, Benny was right in range before bed. He was hovering right around 125. And for the last few weeks before this, he'd been dropping about 15 to 20 points overnight. That was it. Right? Just a little drop and then steady. So that was a fine number to just leave alone. But he texted me because this is how we communicate in my house, even if we're in different rooms. Right across the hall. He texted me a few minutes before I was gonna go in and turn out his light. And he texted me I feel really low. In my head looking at the dexcom I said, You're not low. You're 125 I don't want to treat that. You're going to mess up our great trend. And you're just going to go high. You're going to mess up our great numbers. I didn't say that out loud.

I went into his room and this is what I said. I said, “Really? Because Dexcom says 125. You feel low?” And he said, “I feel like I'm dropping. See now I'm 117.”

Even without the Dexcom number moving down a smidge. I knew my hesitation was selfish and misguided. Alright, it was dumb. He's not foolproof, but Benny knows his body. He has been living with diabetes for 13 years. And he felt low. And in my head, I'm like, “Stacey, come on. These are his numbers.” Did you hear me earlier when I said, you're gonna mess up our great numbers? I mean, I, it hurts me to admit that. But it's his number. It's not mine. It's not ours. So I said, “Okay, I trust you. Let me grab you a drink. Do you think you need more than that?” “Nope, just a juice box should be fine.”

Benny sleeps with an apple juice bottle by his bed. But it's it's a full like 25 or 30 carbs and he didn't need that much. So I grabbed Little can of pineapple juice, and I poured about 12 to 15 carbs, like a juice box, basically, over ice in a highball glass, because sometimes it's just gotta be fun. And in my head, I was kind of feeling guilty, even though I hadn't shared with him. I'm trying to make up for that by the splashy cocktail. So he loved that. And he drank the juice and he went right to bed. Now, I assumed I was going to hear that Dexcom high alarm pretty soon. I mean, I went to bed, but I just figured out right, I guess I just gave him 15 carbs he didn't need but instead, I woke up at 5:50am like I do every day. It showed that he had stayed between 100 and 130 all night long. He had been feeling low, he did need that juice.

While I am thankful that I didn't go into his room and say, “don't mess up our numbers” I didn't say what I was thinking out loud. It bothers me that I thought it at all. I mean, after all this time I do trust Benny with diabetes. I do respect his decisions. And I know that even though he is from perfect, right? He really is safe and happy. So why do I still have those thoughts at all? It's not about the good health outcomes. I mean, that's the first thing we think of as parents, right? We want our kids to be happy and healthy. And I would be lying if I said, Well, it was out of health concern. It was because I wanted to make sure that he felt good, and could sleep well and have a great day at school the next day. That's what I'm supposed to say. But it was about the straight-line graph. It was about wanting, I don't post them, but it was about wanting to not mess up the pattern we were on. I mean, what, would I really rather my son feel crummy and ignore what he has to say to me, showing him I don't trust him. I don't respect him to see that kind of graph. Ah, so how do we get past that?

Not only am I not answering that right now, I'm going to tell you another example of how it's now getting worse. And this is because of control IQ. First, let me say I love this system. tandem is not a sponsor of the podcast. They're not telling me what to say. Not that they ever did. But man, this is an incredible piece of software for us. I am so excited. We've had it as I'm taping the podcast, we've had it for about 10-11 days now. And in the last seven days, Benny's blood sugar has been in range 70% of the time at minimum, I think only for two days. For the most part, he's been in range with less work a lot less work. I don't think in the last seven days he has bolused for a correction, it's only been for food. Now the first couple of days we did have to do a lot of adjusting. And this is very typical. If you are on any kind of hybrid closed loop system and this is includes the DIY systems is my understanding the people I've talked to, you realize right away that most of your pump settings that have worked pretty well for you all this time are wrong. It's just that we are manually compensating for defaults. We're paying attention like we're supposed to, we're checking that Dexcom, we're poking the fingers a million times a day, right? We're really manually using the pump to get the most out of it. And not letting it run on its own. Because it's dumb, right? It's not a smart pump. Most of these pumps, most of the programs that we've had until recently, they're just a dumb brick that gives you insulin when you tell it to.

And when you switch over to the automated systems, you really have to trust and you really have to adjust. Because not only is the insulin duration all for most of us, but your basals are off, your sensitivity factors. I mean, I'm not going to go into too much detail here of all of the changes we had to make. But you do have to take your time with this. In fact, as I'm telling you this, we are still at the very beginning of making the changes here, even with those great outcomes we're seeing. I haven't changed anything in about five days. I've talked to Benny's endo, and we're going to wait another week probably just to kind of let it play out and see what really needs to adjust cuz it gets harder, right? The more in range you are, the less you want to tweak, but I know we can make it even better. But in a nutshell, we had some incredible lows like sustained under 50 lows that we hadn't seen and of course we overtreated for those. And then we had the perfect storm over a weekend of a birthday party that was an overnight party, huge dinner that he completely forgot to bolus for and then tried to make up for half an hour later at a bent canula. So that was high, high, high high for hours and hours and hours, which you know, of course, messed up my control IQ graph. And I am not kidding. Yeah, I know he was high. I know that he said he felt fine, but you know, he didn't feel great. I know that while Yes, his health is my number one concern in my little brain. I'm thinking, well, I want to show our control IQ graph and how great it looks. And I want to be like all those other people I'm seeing with their great results right away and isn't this supposed to be amazing and I want better results. And that's what I was mad about.

You know, I feel like a dummy admitting to this. But I know I'm not alone, because I am seeing a lot of my mom friends. And a lot of people I don't know, on Facebook, who are not necessarily saying it as plainly as I am, but who are definitely struggling. And sure we're struggling with the actual numbers. But I think we're also struggling with the expectations and we're struggling with our kids are old enough to do a lot of this themselves. So we're struggling now. With How do I and I'm doing this to Benny? How do I not helicopter, right? How do I not say to him five or six or seven times a day? Did you bolus? What did you do? What's going on? What do you think? How about this? Did you check? I mean, we don't talk about diabetes all that much in a day to day basis. But with control IQ and wanting to know what's going on with it, and wanting to be able to tweak it and make the adjustments. You have to talk about it. And we're out of practice. So I said to Benny, a couple of days in Look, you're just going to have to be patient with me, you understand why? If I'm driving you crazy, you have to tell me. And if you just want to give me the pump and walk away, so I can see what you did, that's fine too. But we have to find a way that I can see what's going on without driving you bananas, and that you can feel good that I'm still trusting you, I still respect you, I still think that your decisions about your body are ultimately the most important. But I need to help you with control IQ. Because at 15, and everybody may be different. But my kid is not old enough to really go through this and troubleshoot. And he's not interested. I mean, he didn't even really want to watch the training. He wants me to tell him about it. And that's fine for us, because we've talked about it now and I feel a little bit better about it.

But and I'll share another embarrassing thing. I just said that, you know, the last seven days, boy, he's been in range to 80% of the time. Well, today he's kind of struggling as I'm recording this. I'm not exactly sure what's going on. But he got to school and he went over 200 He probably ate some thing, right? I mean, it's not it. You don't have to be a genius to figure this out. And then he went back down. And in my head, I'm like, should I text him? No. Should I find out? What's going? No, you should leave them alone, Stacey, which I did. But I'm also thinking, Oh, I really hope that we're in range. But in my head, I'm thinking, Oh, I really hope we're in range more, because I don't want that 80%. It's messed up. I mean, come on. Oh, this stuff is not easy. I think acknowledging that It's troublesome to think this way, is important. I think acknowledging that I'm still going to think this way, is important. I'm trying to work it through and change it. Thank you for being my therapy on the show this week. Maybe I'm yours as well. If you have similar thoughts. I'm not really sure how to get past it, other than to acknowledge it and talk it out and laugh at it a little bit. Do you have a better idea? Do you have a way that all of us who are thinking about these lines And graphs as ours, and I'm not talking about younger kids, it's so different when your kid is two, or four or seven, or even nine. But once they're in middle school, you know, this transition, to independence, their own care for them to think about it, to take ownership of it, to know that you trust and respect to them. Even if you're questioning, I trust and respect my husband doesn't mean I don't ask him questions, right? It's a difficult transition. But it's such an important one, because soon enough, he's going to be in college and independent, and he's going to be out on his own independent, if I'm lucky. So I do think it's worth discussing, even if it's a little embarrassing.

And I was at a JDRF conference this past week that I mentioned in Raleigh, and I brought this up, I was with three adults with type one. And I mentioned I was going to call myself out on the podcast this week because of my graph thinking about it as my numbers. And their reactions were really interesting. They didn't tell me I was a terrible person. They didn't tell me I was a helicopter mom. They just said yeah, it's Gotta be tough. It's got to be hard. But it's really important to know those are not your number. It's not your diabetes. I think something else that's important to keep in mind is, this is so new, right? These closed loop systems are so new, there really isn't even a good instruction manual for how to know what your pumps settings should be adjusted to 10 history, the great job with the training, I think endocrinology practices are doing a great job with helping people but let's face it, most of us are getting advice on how to adjust this stuff from Facebook, which is not the best place ever, because I'm seeing a lot of people had a lot of highs, we had a lot of lows, the advice there is not going to be comparable, right?

So I'm going to give myself some grace. I'm going to give myself some patience. And I'm going to hope that I get better at this, that I continue to see the humor in this that hopefully Benny continues to see some of the humor in this and that I can continue to watch my language. I don't mean keep it PG. I mean to watch my language so that I am not saying my, when it comes to graphs, or diabetes, or more importantly, maybe most importantly, about how Benny feels, right? Isn't that the most important thing? I can see that number, but it's really about how he feels, how he wants to react at 15 years old, it is well, to the time to let him do that. So I hope I can continue to work toward those goals. Well, now you know why I am the world's worst diabetes mom. I really hope that if you get a chance to check the book out, you let me know what you think about that as well. It is available as an audio copy and you can get that for free. There's lots of opportunities there. I will link up all this stuff on the episode homepage. There's also a transcript of every episode beginning this year, and that's very popular now. So I'm hoping to go back soon and transcribe more of the episodes. We have almost 300 of them now. Holy cow back next week with our full Interview episodes. In fact, next week more McCarthy is back, ask the de moms is back. And we're gonna be talking about a variety of things, answering your questions, including talking about driving, because Benny just got his promise. And yeah, we're trying to figure all of that out as well. Oh my gosh, this stuff never stops. So I will see you back here for that on Tuesday. And in the meantime, be kind to yourself.

 

Benny  16:27

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged.

 

Transcribed by https://otter.ai

Jan 28, 2020

Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware.

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

Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and  why it’s needed.

Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here. 

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger.

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

 

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Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation) 

 

Stacey Simms  0:00

Diabetes Connections is brought to you by one drop treated for people with diabetes by people who have diabetes, and by dexcom, take control of your diabetes and live life to the fullest with dexcom.

 

Announcer  0:17

This is Diabetes Connections with Stacey Sims.

 

Stacey Simms  0:23

This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware,

 

Korey Hood  0:38

there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships,

 

Stacey Simms  0:56

that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes.

But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.”

“But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.”

It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth.

Alright, so DiabetesWise coming up in just a moment. But first, Diabetes Connections is brought to you by One Drop and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the slickest looking at most modern meter My family has ever used. It's not just about the modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo.

 

My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise?

 

Korey Hood  6:30

Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half.

 

Stacey Simms  7:45

Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me?

 

Laurel Koester  8:03

Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story.

 

Stacey Simms  9:40

And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there.

 

Korey Hood  10:19

Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with.

 

Stacey Simms  11:56

Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose?

 

Korey Hood  12:17

Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices.

 

Stacey Simms  13:27

Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit?

 

Laurel Koester  13:33

Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management.

 

Stacey Simms  16:22

Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump?

 

Korey Hood  16:33

I do. Okay, yeah. So you probably too many of them.

 

Stacey Simms  16:36

Wait a minute. So tell us how many are you wearing at the moment?

 

Korey Hood  16:40

Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there.

 

Stacey Simms  16:45

That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with?

 

Korey Hood  17:05

Yeah, I think it's a great question. And I think it's something that

 

there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was

 

I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family.

 

Stacey Simms  19:59

Our experience was, was not exactly similar and choosing an insulin pump in that we were given a lot of choices. And at the time, back in 2006, there were actually more pumps on the market, which is kind of sad to think about. And we chose the Animas 2020. Because I felt like of all of the devices that I was shown, it kind of seemed the easiest. I said to my educator, I really said, I need devices, including pump insets. And everything else. I need the the Venn diagram of idiot proof, and does really good does what it's supposed to do with diabetes, because I really was so overwhelmed. And that's what we wound up with. And as Benny got older, and you know, every four years you're changing and making decisions. We stayed with a two pump. We now use the tandem. One of the reasons we stayed with it is because my son is very responsible, great kid does well loses everything. And we felt the Omnipod PDM would be gone in about 30 seconds, but I'm curious. So when you go through the quiz Your pump and sensor and that kind of thing. What kind of questions are you asking? I mean, I should have taken the quiz before I talked to you, sorry. But I'm wondering like, do you want everything attached to your body? So you don't lose it? If that's one of your questions, or if that's, and I'm laughing, but you know, you understand I'm saying that's one of the No, absolutely, yeah, form factor or your lifestyle factor?

 

Korey Hood  21:22

Absolutely. And I think you raised a really good point about that. The systems that that work well, and are easy to use, have been designed with the person in mind. They've been designed to be, you know, to have the form factor, like you mentioned, but the user experience is something that is positive. And I don't think that all of them are designed and created equally, in that in that sphere. And so I think that, this really great examples of that, and I would say that the tandem is one of those that has You know, and using use an interface that especially for anybody who's been diagnosed in the last few years, you know, that's that's what they're used to in terms of touchscreen. And so with that said, it's a good question about the quiz and one of the things that we did just quickly give you a little bit of history of it. So, in our we did a lot of work serving over 1500 adults with type one 700 adolescents, 700 parents of kids with with type one, to really understand what are the main questions that we need to ask people so that we can put them on the right path toward, you know, an experience where they become more aware about devices and then also maybe matches better to what their lifestyle is. And so we were able to take hundreds of questions and and derive a quiz that have five questions in it. And a part of those questions is about the level of distress and burden that they perceive about that. BTS because we found that that's a really critical factor in making sure that people get the right kind of information about using devices. But we also ask them what their priorities are, what are their concerns? And what are their main ones. And although we don't specifically phrase it, the way that you mentioned, it is that we, we get it, we get at a number of different priorities that people have. And then that starts them on this path. And then because of the way that it's framed, and as Laurel said, around the algorithm, that it will then take people to, based on their responses that will take them to individual stories of others who have those same concerns or same priorities. But then when it one of the parts that's not live on the website, yet, is a device readiness tour device Finder. And so in there, you can drill down a lot more deeply about what your priorities are, and so For example, if someone really wants it to be discreet, if someone wants it really ease of use ease of use as one of the ones that we have in there as a priority, if someone really wants to avoid fingerstick there's all of this that you can tailor the advice or the recommendations that you're going to get based on what your priorities are. So that's great for people who have some idea of what it is, but it's also great for people who are just trying to get a sense of I'm not even sure what my priority is. I'm not even sure what I want out of this so you can learn about it as well in the process.

 

Stacey Simms  24:34

Alright, so I'm looking at the website, and I know that as you said, more is coming. But it does say there's stuff about pump and smart pump. There were only three pumps in the US as far as I know right now. Which ones are the smart pumps? to dump I'm sorry.

 

Korey Hood  24:50

Right? Exactly. I there was something funny there that I couldn't quite come up with but I do agree with you that it what we found and said this is Why is it so important to ask people and involve them in in user testing and development? One of the things we found were that people really wanted to distinguish between something you just put on your body that administers insulin that doesn't make doesn't have any kind of alteration or it doesn't change what it's doing based on anything else. And so, you program a pump and they're, they're, you know, they're sophisticated for, say, 1995. They haven't evolved a lot. But they, they still do a great job and are reliable and precise. With what's what we wanted to distinguish is this idea that a pumpkin do something like low low glucose suspend or can be part of a larger closed loop system. And so the smart pump idea really came from what we heard from people and although it's not a, you know, an FDA category of devices, we really heard from people that they wanted to that distinguish between kind of the traditional way that you would pump versus something that has the capability to be within a closed system or to have low glucose suspend. So that was really the distinction there.

 

Stacey Simms  26:11

Got it. So in other words, if you use an Omnipod on its own, that's a pump. But if you use an Omnipod as part of the non FDA approved loop with a Riley link, now you have a smart pump.

 

Unknown Speaker  26:26

Exactly. Okay.

 

Unknown Speaker  26:27

Let me ask you. We talked

 

Stacey Simms  26:29

about this at the very beginning that one of the things that makes DiabetesWise unique and very, very helpful is that it is not put out by a company with a stake in what device people

 

Unknown Speaker  26:41

choose. The

 

Stacey Simms  26:44

Helmsley charitable trust I think many people are familiar with is so much of what it has done for diabetes research and funding and grants. And we've talked to some folks from the homestay family on the show in the past. What was the purpose here? You know why did Helmsley want to get into involved, it seems really obvious, because you're helping people. But I just wanted to ask you about the involvement here.

 

Laurel Koester  27:08

Yeah, absolutely. Well, I think they see the point that you raised about the the fact that we are an independent entity really speaks to kind of the trust factor not only in you know, what Helmsley because we don't have a financial stake in this. But we're also partnering with some of the leading diabetes researchers in the field at Stanford University. So we really want to ensure that that we're supporting information that is unbranded and unbiased and that people can trust. And I think, again, to underscore that this website is really informed by People living with diabetes is their voices. And, you know, for example, one of the tools that Korey mentioned of this device readiness tool, some of the research that's going into that is, you know, from a sample of people with diabetes, so when people see, you know, different priorities and, you know, writing, as you know, kind of just a sneak peek into some of the features that are going to be coming out, those are actually based on input from people living with diabetes, who are using diabetes was for the first time so it's a really unfiltered real deal.

 

Stacey Simms  28:44

Cory, what's your hope for this? Do you do you hope that like a CDE would say, hey, let's sit down together go through the quiz on DiabetesWise, or is it a question of people just kind of seeking a little bit more, or even people. What I find fantastic about this is that you have empty I'm on here as well, you're not assuming everybody wants an insulin pump, some curious what your hope is going forward?

 

Korey Hood  29:07

It's a great question. And I think that the ultimately what we want to do is we want to be able to match the device with the person and their lifestyle and their interests and their priorities. And, and I think one way to do that is that we traditionally don't do a lot of in clinical care is to spend more time objectively figuring out what's what's going to be the best fit, because clinics are busy, providers are busy, it's hard to get that dialed down really closely. And so my goal really is to get the right one for the person and so it's not a one size fits all approach. And if people are using multiple daily injections, and using a meter, you know, I could argue most of the time that you know, add a CGM add dilib re add something that will give you a little bit more glucose information to dial it in. So there's Maybe a little bit of room, but if you don't want to move, and you are really happy with it, then maybe there's some other some areas of distress related to diabetes that we've learned about in this process that we can help you with. And so, you know, I, it's, it's really intended to be a resource that can match and fit with anybody's interested in what they want to do around devices. But also, you know, at a minimum, you know, it educates the person about it, it also can be a resource that like you said, CDs could use one of the things that we found really helpful is we went to a D over the summer and in August and Houston and one of the things that we learned and, and talk a lot about with CDs was, you know, how this could be a helpful tool for them. And so that's another thing that's in process is making sure that we have something that is that can be used by them in a in a helpful way so that they can also get people on the right devices. I mean, I think that everybody If you get the right device on somebody, and they use it effectively, everybody, when there's less time and involved in on the clinical side, they're better outcomes. The person's happier. I think that there's just so many reasons that we want to do this. And then the other vision for this is that we keep it completely free, that we keep it disconnected from are not connected, not tethered to any kind of device manufacturers, we need them, they have to be part of this. And they're doing great work. But we don't want to be as Laurel said, we're not you know, we don't want to be biased or branded in any way we want it to be free and an objective tool for people to use.

 

Stacey Simms  31:43

I'm curious, what do you mean by you need them for this?

 

Korey Hood  31:48

Well, I mean, I think that we don't necessarily, we don't necessarily need them for DiabetesWise, although, I mean, you could argue that, you know, we wouldn't have DiabetesWise if we didn't have devices, but that's Maybe getting a little

 

Stacey Simms  32:02

device.

 

Korey Hood  32:04

Right, exactly. But But I think what I think I'm just noting that we need for I think the person with diabetes, to have the best chance of the best outcomes we need device companies who are pushing the edge and who, who are, you know, are the competition is a healthy competition. And so I think it's good that they all exist and that they do the work. We just don't want them. We don't want people with diabetes to feel like they have to go to a certain device. And so that's why we we created this so that they could have a more

 

you know, unbiased view of what's available.

 

Stacey Simms  32:47

I just didn't want to make sure I just wanted to make sure I didn't misunderstand there that you didn't need them. In other words to give permission to recommend or that they had to somehow sign off on DiabetesWise.

 

Korey Hood  32:58

Right, right. Okay. There we go. We, you know, if if we want to, we want to work with them on this and make sure that we have accurate information. But ultimately, this is driven by us and our team and our collaborations. And so if there's something on there, that isn't that they don't like then or a story that someone bashes their device, and it's still going to be on the website. But it's also that we we appreciate that they've done a lot of work to bring us to this place where we can actually have these discussions and we can actually have options.

 

Stacey Simms  33:35

Yeah, it's interesting. I mean, I mentioned when Benny was diagnosed, there were more pumps on the market. And while there are fewer now at least the technology is improving. Before I let you go, Cory, could you speak just for a moment about where it's been for you? And you know, where you are looking for to go in the next couple of years?

 

Korey Hood  33:54

Yeah, you know, I think that I mean, I've been it's a little bit of background I've been using For over, I think two and a half years now and, and I've found a great deal of benefit from it mainly on glucose control, but also in on the mental side and having longer chunks of time throughout the day where I don't think about diabetes, which is really nice. So I, for me, I've been really happy with the progression, it's not perfect, and there are still pieces, you know, multiple pieces you have to wear, we still have to, you know, stab ourselves with sharp pieces of metal. So there are a lot of these things that aren't going to go away and I don't think are going to go away anytime soon. But I do think that the ability to put something on and to not pay much attention to it for a few days is we're close to that. And I think that that's what is really appealing. For me and I think for others that we talked to is that if we do Just continue to decrease the amount of time that people have to think about it, and they feel safe, and feel like it's reliable. And that's really what we're aiming for. And I really do think that that's where we're moving in the next few years.

 

Stacey Simms  35:12

Laura, let me give you kind of the last word here, you know, what are your hopes for DiabetesWise and how it helps people

 

Laurel Koester  35:19

just positing said, That's quite a big question. You know, I hope. I think from the homepage standpoint, we want to make the information about diabetes devices and technology is available to everyone living with diabetes, you know, no matter where they live in the US, you know, um, you know, a lot of times just information isn't accessible for people and we want to make sure it's a trusted source of information. And you know, if someone lives in rural America, for example, and they don't have access to support CT groups or an endocrinologist that they can still connect with people like them to learn about the different technologies and devices and experiences of people that are navigating there. They're the same disease.

 

Stacey Simms  36:18

I'm thrilled that this is available. I really wish it was around when we were choosing our devices, because it was a little bit like throwing darts at a dartboard. Luckily it worked out. Okay. But Korey and Laurel, thank you so much for joining me. I really appreciate your time.

 

Unknown Speaker  36:38

You're listening to Diabetes Connections with Stacey Sims.

 

Stacey Simms  36:44

More info about DiabetesWise on the episode homepage and of course, the link is there to go ahead and take the quiz and tool around on their site and see what you think. Up next. What Marco Polo has to do with type one that's in our Tell me something good, but first Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow. As a caregiver, a parent a spouse, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up is required. You can learn more just go to diabetes, connections dot com and click on the Dexcom logo.

 

It is time for Tell me something good. And this one made me smile when I read it. Oh my goodness. So Rachel shared a story: “We were at Target today and my son's low alert on Dexcom went off and we heard in the distance, ‘T1 I hear you – Marco’ my boy lit up. ‘Yes, you do T1 – Polo!’ and another kid pops up out of breath. And the two of them just chat for a few minutes about Legos or with with everything in common. I melted.”

So how about that? I mean, we've heard some Dexcom alerts or seen somebody checking their blood sugar. And of course, I want to run over. And how are you and what are you doing here? But I don't I try to contain myself. But every once in a while, I'll say something. But I can honestly say it has never occurred to me to yell Marco, and hope to hear back a Polo. Dexcom alert. So kudos to these kids. And Rachel, thanks for letting us know about it. any follow up? You have we would love to find out. I mean, I can see her son doing this again, and maybe they became friends. I don't know. But I thought it was a really cute story. And if you try it, and it works, let me know.

I think the closest we ever came was interestingly enough at a hotel pool speaking of Marco Polo, this years ago, we took a road trip to Chicago. That's a story in and of itself. We took an RV from Charlotte to Chicago. And we did six states and five days to go see Syracuse play in the NCAA Tournament. Anyway, long story short, we did not bring the RV actually into Chicago, it would have been very expensive to do that. So rather than you know, pay a lot and find a place to park it, we parked our RV at my husband's friend's funeral home in Skokie, outside of the city, but that's not what I wanted to tell you about. Um, so we're at the hotel pool. And we look over and there's a little girl with the Dexcom and Omnipod on the backs of her arms. And of course, Benny at that age, was willing to go say hi, be social. So he did and we struck up a whole conversation and they were so nice. It was a lot of fun. Sometimes those diabetes spottings in the wild, really give you more than you'd expect. There. Just something so rewarding and so affirming about knowing you're not the only one, I think as much for parents as for the kids, and someday I'll tell you more about our crazy road trips, we're on a quest as a family to try to hit all 50 states and the kids were so excited about this when they were younger, I think we're on 27 or 28, I'd have to check. And I think I'm the only one who's still excited about trying to do it has to be all four of us together, you have to have feet on the ground, airports do not count. And so feet on the ground, you can't drive through either you have to actually get out and stop and take a picture. You need picture evidence. You don't have to have all four faces in the photo because sometimes people are grumpy and don't want to take pictures. But we need all four of us. So we have one or two pictures where everybody's holding up a cup of coffee or hot chocolate. That one was like at 6am in Ohio on that road trip. I have another one in Las Vegas where we're all holding up gelato, and you can't see our faces. So I'm hoping this summer not to get completely off track to go to New England with the kids because we've got a lot estates a hit up there. Anyway, if you have a Tell me something good story can be a road trip or anything of the kind, whatever works for you. You can send it to me Stacy at Diabetes Connections. com or post it in the Facebook group Diabetes Connections to the group or send it to me on social media, it'll find its way to me, just tell me something good.

 

Keeping that busy schedule, which I'm actually having so much fun with. I'm going to Raleigh, North Carolina for the JDRF type one nation summit this weekend, doing not only the world's worst diabetes mom presentation, but also my favorite one about making connections in real life Diabetes Connections. I have been doing this talk since before the podcast came about. That's where the podcast got its name. And I'm also talking about social media. So I'm really excited to meet some new people right here in my state. And then in two weeks, I'll be in Maine, for an event in South Portland, Maine dizzy calendar as I head out on the world's worst diabetes. Mom book tour. And if you've got an event later in the year, things are still pretty busy. Definitely through April. But after that, it slows down to about one event a month right now. So if you've got a jdrf summit, if you've got another event, especially in the fall, please let me know. So we can plan for it. I would love to come and meet you. I can do those presentations. We can do a live podcast, we can just hang out and talk. It's always fun to meet new people. And I do love making those in real life connections.

All right, coming up later this week, another mini episode, where I'm taking on what I think is a pretty controversial topic. In fact, when I posted about this on my personal page recently, I was shocked at the response I got. I'm going to be talking about why I think it really is a bad idea to post pictures of your child in the hospital. Yeah, I know a lot of people do this, but it's just not good. So I'll be talking about that coming up on Thursday. In the meantime, thank you as always to my editor john ducatis. audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday.

 

Unknown Speaker  43:12

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai

Jan 23, 2020

Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it.

More info on untethered here

More info on Tresiba here 

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Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors)

 

Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom, Real life stories of parenting a child with Type One Diabetes available as a paperback eBook and audio book. Learn more at diabetes connections.com

Announcer 0:21

this is diabetes connections with Stacey Simms.

 

Stacey Simms 0:27

Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago.

 

couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them.

I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here.

So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before.

Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok.

And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give.

And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us.

So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this?

Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this.

But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there.

So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us.

It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom.

Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet.

Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself.

 

Benny 14:19

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

 

Transcribed by https://otter.ai

Jan 16, 2020

 

As we all wait for the release of the newest hybrid closed loop software, Stacey has some thoughts about what she hopes it'll bring to her family's experience.

Transcription below!

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Episode Transcription

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by “The World's Worst Diabetes Mom, Real Life Stories of Parenting a Child With Type One Diabetes,” available now as a paperback eBook and audiobook, Learn more at Diabetes dash connections.com

Welcome to one of the minisodes of diabetes connections. I'm your host, Stacey Simms. And I started these shorter episodes this year, just so I could talk a little bit about stuff that interests me. We still have our weekly episodes every week that are longer and more interview based. But these are just little bits of topics one at a time, where I want to kind of share what's on my mind and then hear back from you whether it's in the Facebook group or elsewhere on social media. If you are new, we have a terrific Facebook group. It's diabetes connections, the group, please reach out and join and you can always reach out via email. or other social media I am Stacey at diabetes dash connections calm. And today I want to talk to you about some thoughts on Control IQ, the new hybrid closed loop system from Tandem.

 

The emails for Control IQ were set to go out this week. So I'm sure there was a lot of online chatter and you know, scrambling for this and did you get your email and that kind of stuff? Did you get your prescription? And do you have it yet? And have you downloaded it? And I thought it would be fun to just take a moment before you know we start sharing our thoughts about Control IQ and trying it you know, just for the record, kind of to get this down. What are my hopes, what are your hopes for Control IQ and really for a lot of these hybrid closed loop systems and before I get into that, for the Hybrid closed loop systems systems. I think that your perspective on this has to depend on when you entered the diabetes community.

I know we have people listening who have been diagnosed for years and years, you know, 50 plus years, 60 plus years. And their perspective is going to be very different than someone whose child perhaps was diagnosed six months ago. So just as a reminder, my perspective is that of a parent whose child was diagnosed 13 years ago, at 23 months, who went seven years with no CGM, because frankly, we didn't we didn't really feel like it was accurate enough to put a second sight on my kid's body. And by age nine, it really became his choice. And then when he chose to do it, I don't think he's taken it off for more than two days. You know, Maybe a beach trip here and there. But we really are huge fans of CGM. And he's had a pump since he was two and a half. So that's my perspective.

Look, I know this is not going to be perfect, right? I mean, all this technology has issues. But what I really hope but I am hoping for is not, you know, perfect numbers, right? I don't think Benny's A1C is going to suddenly go down to 5.8. And that's not my goal. What I'm really hoping from Control IQ. What I'm really hoping we get from Control IQ is less stress, less of a mental burden on both of us, and more freedom for Benny. And let me just talk a little bit about that. Because I if you know me, and you listen to the show, we give him a lot of freedom. But a perfect example is he was at a wrestling tournament. I mean, he's just off crutches recently, but the kid hasn't missed a practice or a meet. He just really likes to go and be part of the team and they put him to work. He's been Great, but he went to a trip where he was catching the bus at school at 6am. They took the kids, this was a Saturday, they took the kids about 45 minutes away. He didn't get home until eight o'clock that night. They feed them on the road. It's a lot of potluck. It's a little bit of fast food, but it's really nice. A lot of parents get together and make homemade stuff. And I pack lunches for Benny too, just because he likes to eat certain things. It's not about diabetes really. and then you know, I try not to hover and check in all day. Obviously, I can see his blood sugar on the Dexcom and he's responsible for remembering and taking care of himself.

And on a lot of these days, and this is this happens really just about every weekend during wrestling season, and usually once during the week they have a match after school to what generally has been happening is he's bolusing after, because he's not sure exactly what he's going to eat, or he forgets, right, and that he's kind of correcting a little bit late. So we haven't had any really crazy highs. I mean, there's one inset issue we had, but he's been kind of floating up to like 210 to 215. And then I'm debating when do I text him because we do have an agreement, we, you know, that is well within my rights to text him, but at the same time, you know, I want to leave him alone. I don't want I don't want to burden him. So it's been a little bit of a struggle and I'm really hoping for his Control IQ evens those numbers out, right, I don't really expect it to take care of you know, if he forgets to bolus and spikes up to 400, which happens every once in a while and he come on, I don't expect it to fix that. But if he's bolusing as he's eating or a little bit after, or he miscalculates carbs, right? I'm really hoping it helps with that. I'm hoping it helps with the excitement spikes and some of the adrenaline spikes from athletics. I don't know what it'll do with that. I'm optimistic but You know, we'll have to see,

What I hear about all the time from people who have done the DIY loops is that they, they don't necessarily have, quote, better control or more in range numbers, because a lot of people who do DIY frankly, I mean, they had really low A1Cs to begin with many of them. I know as you're listening, you're saying not me, okay, I'm just making a generalization stay with me. The point is that they may not see a huge difference in A1C or time in range, but they are seeing better sleep, they are seeing less work, right, more freedom. For Benny, with Control IQ and for everybody with Control IQ, I hope it means less work and less upstairs less mental burden. And for people who do have higher A1Cs, who maybe are newer to pumping or newer to CGM or maybe this is an opportunity for better education. I really hope that those people do see better health and do see better outcomes and do see better outcomes.

I mean, as you listen to this podcast, again, making a generalization Here you are, you know, the top educated people in the diabetes community, not necessarily because of this podcast, but we've done the research. People who listen to this show are extremely well educated, you're seeking out more information, you're in the Facebook groups, you're reading stuff, right, you kind of know what's going on. And if you tuned in to learn about Control IQ, just the fact that you know what it is called, and what it is, means you're better educated than probably, I'm going to throw out a number that I'm making up 80% of people in the diabetes community, community, and those are the folks that if they have access to this technology, which is a whole other thing, story altogether, the cost the access, oh my goodness, the costs the access. I mean, I we must acknowledge that. But if they can get this, those people are going to see huge decreases I think in A1Cs and that's really exciting stuff. Is this a solution? a cure? Of course not. And as I just touched on there, we have bigger issues, the cost of insulin, access to insulin access to this technology, education, education for endocrinologists access to endocrinologists for mostly for adults with type one diabetes, right? I mean, there's so much going on here.

I didn't mean to get off on a tangent, but my expectation for Control IQ is not that we're going to see miracles. We already sleep through the night pretty well. But I'm hoping that he can continue to have the independence that I give him with more time and range with less nagging from me, you know, gosh, in the back of my mind, I'm really thinking about camp later this year. If you're not familiar, Benny goes away to non-diabetes, regular sleepaway camp for a month every year. And he does really well. That's a topic for another time, I probably will do a minisode on camp. But you know, he does run higher for that month. Some of that is our thinking is about safety. But most of that is about he's a kid who's basically responsible. He's a kid. He's basically responsible for his care 24 seven at this camp, and he will often bolus late or forget a correction bolus. I can't wait to see what Control IQ does for him at camp. It's gonna be really exciting.

All right. I know a bunch of you listening are thinking I'm not going to go with Control IQ. I've heard from many people who already see they're going to wait and let it roll out. And then when all the bugs are done, they're going to go ahead and take the plunge themselves. We plan to get it the minute it is available to us. Our endocrinologist, we just saw him at the very beginning of January. He said the prescriptions are in we are all set. So it's possible by the time you hear this, that we already have it and we're using it in Benny's pump, although I doubt it will it will see and I'll post in the Facebook group and I will give a review of course as soon as we possibly can. But man, I'm thrilled to think about this. And if you use another type of insulin pump and you're still listening, you know of course insulin has its own system coming out. Medtronic has a new pump coming out there are more CGM is coming to market. There's gonna be a lot more to talk about, of course when it comes to hybrid closed loops, but we've been waiting for this for a long time, you know, Those loops. But we've been waiting for this for a long time, and I'm so excited to see what it does for Benny.

And you know, Benny would probably be the first to tell you that I am the world's worst diabetes mom. If you'd like to learn more about the book or about me, you can head on over to diabetes dash connections dot com and be sure if you're new especially to check out our extensive archive of shows. You can search by keyword or by subject. We will be back next week with our regular interview longer episodes and those drop on Tuesdays. Beginning This month we have added transcriptions for every episode, and you can see those over at the homepage, just click on the individual episode homepage and scroll down and you will see the text of the episode. A lot of people have been asking for that I'm really excited to provide it to provide it.

Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself.

 

Transcribed by https://otter.ai

Dec 31, 2019

Tandem's Control-IQ system was approved by the US FDA in mid-December. In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences.

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

Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).*

Check out Tandem's YouTube channel, featuring new videos about Control IQ

Join the Diabetes Connections Facebook Group!

This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes.

Sign up for our newsletter here

To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor.

If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date.

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Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors)

(Time codes listed refer to times within the interview, which starts 5:30 into the episode)

Transcript:

This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted.

But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website.

Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using.

For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out.

Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website.

Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well.

One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy,

Stacey Simms 0:01
Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is.

Molly McElwee Malloy 0:08
It's a really exciting time. For sure. Absolutely. No doubt.

Stacey Simms 0:15
Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem.

Molly McElwee Malloy 0:39
So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science..

Stacey Simms 2:05
Be vert interesting,

Molly McElwee Malloy 2:06
Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical.

Stacey Simms 3:54
Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now.

Molly McElwee Malloy 4:27
So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program.
So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready.
And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump.
So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff.

Stacey Simms 8:37
When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like

Molly McElwee Malloy 8:59
this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard.

Stacey Simms 10:27
I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening.

Molly McElwee Malloy 10:35
Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider.

Stacey Simms 12:10
Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ?

Molly McElwee Malloy 12:24
Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work.

Stacey Simms 14:12
So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically saying we're not gonna have to learn to use the pump that we know so well.

Molly McElwee Malloy 14:38
Correct. Right. So all the settings that you know and love are great. And you will move forward with those right? Okay, people coming from other systems, like maybe different pump or multiple daily injections, things like that. You're going to want to establish some really good baseline settings and make sure that those are accurate. So you particularly, if you're coming, I could say you're coming from a competitor's product like that, that has automated insulin delivery, you want to make sure that those settings are good to go. Because the previous, you know, previous other things that you may have used, only altered on board and carb ratio, right. So if you're only pulling two levers, the other things may not be totally, you know, set in stone and based and in the reality that you need. So, moving forward, you will need to make sure that the patient has, you know, your patient which would be your son or myself, that user has the pump parameters and settings that are based in

in what you would want to use.

So somebody is moving from a different product. We just want to do a double check and there's going to be in the healthcare profession. We'll have a little checklist to go through and we'll ask them, you know, you're coming from a different product, please look at the baseline settings and make sure that they are perfect for the patient. In your situation, you're just going to be moving from you know, base like you to Control like you. And those settings will apply. I will say a note for your super super savvy listeners who have used Basal IQ. And something we've noticed just in real world data as we've looked at people who data people have up to their basal rate to allow for, you know, like you to go to be like suspend, resume, suspend, resume and kind of hug that line at 80. A lot of people have done that. And I want to talk to that community real quick and say, Look, I know what you did with Basal IQ with riding those basal rates high to hug that line at 80. I saw that we saw that. You did that. We know why you did that. Just look at them. One more time before Control IQ because Control IQ is going to be adding, right? It can add insulin. So just before you go on your merry way with Control IQ like you double check your baseline settings, are they where you want them to be before you go right knowing that a system can add insulin to it.

Stacey Simms 17:20
Okay, so you mentioned a lot of people, a lot of my listeners like to ride that 80.

Molly McElwee Malloy 17:27
Let's talk about people, man, a lot of people love that they want like, they want that super, super tight Control and I get it. I totally get it. But you got particular, you know, space of listeners needs to be open to the idea that we're now going to be adding insulin right? So if you've kind of made these aggressive pump settings with Basal IQ and now you're going to be just on your merry way. We don't want you to experience hypoglycemia, right? That, you know, we don't want to put anybody into hypoglycemia land. My personal least favorite experience of, of diabetes? Well, let's, let's not do that.

Stacey Simms 18:10
Right. But the question then is, what are the targets? I thought Control IQ wasn't really going to let you ride that 80. Can you talk a little bit about I mean, obviously, nothing's perfect hypoglycemia can happen hyperglycemia can happen, but what is it aiming for?

Molly McElwee Malloy 18:29
If your listeners can pull up the little chart, the patient pamphlets that I that I gave you, there's one of them that has a really good visual of what that looks like. And just so that we can go from soup to nuts, the person who has now downloaded Control IQ technology, all you have to do is turn it on. It’s either on or off. Just to preface all of this before we get into target and all of that. There's no kick out with Control IQ technology. Control IQ technology works, so long as we have CGM. And I will say that as long as we have a continuous stream of CGM, or we will continue processing that data. But if there are 20 minutes or more of missing data from that CGM and those who are very savvy with Dexcom know that you can kind of get internet readings occasionally. I'm not talking about reading, you've got a loss of CGM for more than 20 minutes, we're going to revert to your pump settings. And so we can get that until we can get that information back up and running. But if we miss a value or two when we come back, and we've got that information, we're running full steam ahead We're good to go. If we have any data point in that 20 minutes that pops up, you're still in. It are still in the game. They're still playing. But there's no kick out. Right?

Stacey Simms 20:14
So as you mentioned that, just to be clear, there's no auto mode or manual mode to kick out of. So if you lose the CGM signal for that period of time, as you said, What did you say 20 minutes.

Molly McElwee Malloy 20:26
It has to be greater than 20 minutes

Stacey Simms 20:28
if you lose CGM signal for 20 minutes, it just goes back to regular Tandem pump, all the settings are in it. When the signal comes back, it automatically starts Control IQ, you don't have to do anything else.

Molly McElwee Malloy 20:40
Correct. You could sleep through the whole process, right? You do you right. Like if we lose it, we'll we'll get it back as soon as possible. We're going to alert you that there’s no CGM available, right? Right. We're gonna alert you that this happening. But if you're sleeping or you're doing something else and you are not paying attention to it, we’re going to keep running with the ball in that process without having to like all these bells and whistles, and there's no modes, right? Control IQ is on or you can turn Control IQ off. There's no mode.

Stacey Simms 21:16
Alright, so let's talk targets.

Molly McElwee Malloy 21:19
Yes. So there are several targets, the one you will call the main target is the number 112.5 which in the pump, it's going to default to 110. Why because you don't have 112 point fie as an option. 112.5 for those who are interested is a weighted average between 80-120 with the least amount of hypoglycemic outcome. So if you're a statistician or mathematician and you love numbers you can a bunch of scenarios of hypoglycemia and when it will likely going to happen in all these different situations which is what did happen to come up with this number you would come up that 112.5 had the least amount of hypoglycemic outcomes in the greatest amount of time in range and you know successful euglycemia. Yeah, so 12.5 it is. And it will show up as 110 in the settings 110 will be the target. In the settings that you set up for Control IQ it is non-negotiable. We have different ranges for things that we're using throughout the way the system progresses, but as far as looks on the settings on the pump, is going to show up as 110.
Now when you enter the system, as long as you're in euglycemia land, like as long as you're in range and predicting range, which would be predicting 70 to 180, we’ll use your pump, right your pump study should be adequate. But the minute your predicted to be outside of the range. And this is where this graphic is really helpful. If you’re predicted to be 70, right, less than 70, we're going to start decreasing basal insulin. It's predicted when you start going below 112.5 right. And then when you get to 70, we're going to stop basal delivery. And this is during this time, right? So the during regular Controller to you, if you are predicted to be less than 70, you start going down less than 112.5 we're going to decrease basal, and we'll eventually halt basal. Now if you're above 112 point five and you're heading up, and you're predicted to be above 160, we're going to increase that insulin delivery and increase that in the background until you hit a prediction of 180 and that's not you hitting 180. That's the prediction heading 180. If the prediction hits 180 then we can give an automatic correction bolus once an hour during waking time and I'll go over more about what that means in a minute.
But predictions to be above 180 one at if there was, you know, not been another bolus in the last hour, we can give one at that point to try to keep blood sugar more in range. So the range 70-180 again, 112.5 is euglycemia. Going below that, you know, we start decreasing if you're predicting below the lower than 70 we're going to, you know, stop basal insulin delivery, you’re predicted to be above 160, we're going to be increasing basal insulin delivery of your predicted to be above 180. We're going to deliver an automatic correction bolus once an hour during the waking time. And by that I mean when you're not using exercise or sleep. There's three activities in Control IQ and they are Control IQ or what I call wake time. There's sleep and there's exercise. And those three things have three different targets. Because if you think about it, those three activities have very different applications for your blood glucose. So, waking time 70 to 180. That's sort of where we aim for all things during the day to accommodate for blood glucose fluctuations with meals and stress and schedules and everything like that. Sleep is something you program. So you can have just like you would program a basal rate. So if your basal rate normally changed from three to 4pm, every day… the sleep is, you can program that right. So mine is programmed for 10pm to 6am. So from 10pm to 6am I'm sleeping and it will automatically go into sleep, it will automatically come out of sleep. I don't have to do anything. And during sleep, we're going to target 112.5 to 120 which is a much tighter range, but we're not giving automatic correction boluses during sleep,

Stacey Simms 26:02
can you tell me a little bit about the thinking there? It seems obvious. But is it just because a person is sleeping and can’t adjust the pump? I'm trying to figure out the logic?

Molly McElwee Malloy 26:14
The logic of not having the autocorrection? So the logic around not having the autocorrection overnight is about being super conservative with the FDA and their comfort level . But also, the algorithm really drives a really tight range during that time because there's not a lot of interference, right? You think about sleep it's like for blood glucose is the easiest time to manage diabetes, right? because nothing's happening. Although you are asleep, so technically difficult because the operator is asleep, right but as far as what's happening with diabetes, sleep should be a pretty steady state. So if we can automate going into and out of and having a really timeframes for that period of time, then we can kind of optimize time in range by, you know, six hours a day being really tightly Controlled, or however long the sleep activity is. And we noticed in the in the clinical trial, those people who had a sleep schedule and not everybody did, and you do not have to set one. But those people who had a sleep schedule had significantly more time in range. So that's just something to notice. No, you don't have to set one right? Could you have automatic corrections going all night long and being awake, I'm sure you could do that. If that that's how your diabetes works. Great. My diabetes, your diabetes, somebody else's diabetes, they're all going to be different, right? We all have different versions of how we metabolize things and how we sleep and how we process and our activity and you know, sometimes, you know, the sky's blue and sometimes it's not and it just depends. That's life with diabetes, some things will work with some people, somethings won’t.
We did have in the clinical trial have some people we refer to as Sleeping Beauties who had sleep going 24 hours a day and and that would put you at the you know, like the 112.5 to 120 all the time, no automatic corrections but you would get basal increases and basal decreases to try to keep you in that range. And for some people, that's great. You know, that's where you want to live, that's fine. You will not get the automatic correction, you will need to give that correction when you need it. It's not going to be enough to accommodate that. But hey, if you're sleeping beauty and that works for you, that's fine.
Then there is exercise. Exercises is a button you press. You go into options you press exercise – start. I'm exercising now and then I will leave it on exercise and when I want to stop I will go in and I will stop exercise. And while I'm exercising will be a little Running Man on the side of the screen to show me that I am exercising. And that will tighten the reins to 140 to 160. To help prevent hypoglycemia, it also engages what we call the brakes or the prevention of hypoglycemia by 10x. So if you think of a car rolling down a hill, and if you think of getting your brakes tightened 10 X, the minute you start going downhill, you're going to stop, right? It's going to be like that, stop, it's gonna be really, really grippy. And that's the way it works doing exercise. We anticipate hypoglycemia. Now you can still get an automatic correction bolus, and you can still get an increase in basal during exercise because there are people who will go high during exercise. With the pediatric sports particularly, you notice a big difference between game day and practice day. Like game day there's a lot of adrenaline there's usually a lot higher blood sugars and practices it’s low blood sugars. So You know, this is why that's still going on in the background, starting in an hour before starting at the time of exercise, leaving it on an hour after all of that's going to vary depending upon the person and the activity and you're going to have to play with that and see what works for you. You know different strokes for different folks. And some people won’t need to put on the exercise right they'll be fine where they are. It just depends on what you're doing your body, your diabetes, what's going on. And as to when you start it and when you stop it or if you use it. Likewise, you know you could put exercise on 24 hours a day if you wanted to, if you needed to ride a little bit higher or you know were feeling very cautious about something you know, and you want it to be, driving all day or something you know, like I just want to be a little bit higher today

Stacey Simms 30:53
Your kids first sleep over

Molly McElwee Malloy 30:55
your kids first sleep over and you want that automatic bolus, they're going to snack. And, you know, if you think about it, like if I think about my kids there, they are active 24 hours a day until they crash, right? So if they're super, super active, and I'm getting, I'm getting frequent lows from that activity, I might put them in exercise all day, right? So depending on what's going on with that patient that time and what works for you, they'll be different. They'll be different reasons why different activities are better for some people than other people and when you want to use them, but they're all available to you to use as you want to because we all deserve choice, and we all should have Control over what happens with our diabetes.

Stacey Simms 31:43
It's really interesting. Okay, I'm trying to get through the list because I have I have 14 questions for everything you answer. So I know we'll talk again, but I do want to ask you about insulin on board and I will set this up by saying in the last few months, I've been reading up a lot on this in anticipation of what we're going to talk about here, because Benny's insulin on board, which is as you listen, you may not realize there's a setting in the pump, all pumps, where you try to figure out how long the insulin that you're giving is lasting, and this is with MDI as well, but the pump does it automatically - you have to tell it and then it keeps track. So we have always said Benny's at three hours. And then when he hit puberty, we kind of tightened it up. And I've learned that it really didn't matter what we said, or what we thought that everybody's insulin on board, studies show, is about five hours. And so that's what's in Control IQ?

Molly McElwee Malloy 32:40
Yeah, it's at five hours. So if you look at some data, and again, I can provide you with links to some published data on that, the data says it's between four and a half and six hours. So let's split the difference and call it five hours. So we're using five hours for several reasons. One it’s established data we can rely, on you can hang your hat on it. Also, it's a static number, right? So if you are, if you are trying to aim for targets with a multitude of patients, a multitude of patients and you're trying to automate an algorithm, you cannot then vary IOB without causing some pretty crazy ripples, right? So it's going to work for some people, some people not, we want something that works for most people, right? Like, I understand that Control IQ is an amazing solution for a lot of people. And if some people are like, I'm so much better when I do it myself. Do it yourself. That's fine, right? Like that's why we have choice. But in order to design a system for the masses, you're going to have to go with the large majority of scientific evidence, right, which again, shows insulin on board somewhere between four and a half and six hours. So going with five hours and keeping that static when you're aiming for different ranges, and you're allowing people to do different basal rates and carb ratios and sensitivity factors, you will have to lock something in and we've locked IOB. And that gives you some really good results, obviously, but and for skeptics, I will say this, you know, try it. Try it and see what you think. Because it may not be as different as you think.

Stacey Simms 34:27
well, I’ve been shocked to find out that the entire looping community, and the do it yourself folks, all of those systems are based on five hours, pretty much.

Molly McElwee Malloy 34:37
Right, right. And you do have to assume some, you have to make some assumptions, right when you're writing an algorithm that's going to modulate insulin for the masses. And one of the assumptions is how long does this thing last? If you change that, all the other math has to change. And that makes it a very unstable algorithm. A very unstable system. And then it’s not for the masses, right? So that is why it's locked in and there's a lot of scientific evidence. And the DIY community has embraced us too, you know, at that five hour time frame.

Stacey Simms 35:13
In terms of the rollout Molly, I remember when we got Benny's pump about a year before Basal IQ was available. And as I was looking back, it was a pretty seamless process for us. In that I remember it was FDA approved. We got the email, we got the prescription from our doctor then Tandem said here's your code, and we downloaded it and the whole process took from FDA approval to on Benny’s pump, with no special treatment, was 35 days. I'm not going to hold you to that. I'm not asking you to keep to schedule, but I am going to ask and I think 35 days was pretty great. Is there anything that you all learned from the Basal IQ roll out that people who went through that can expect to experience differently this time around or did it work pretty smoothly?

Molly McElwee Malloy 36:00
Yeah, so I mean, you always learn, right? You always learn, and we're always learning and Tandem is excellent at collecting data and then understanding, you know, and learning from it. So one of the things that we did, we did learn there is that we needed a more robust patient portal. And so we've done that we've built a more robust portal, and we've built a lot of automation in the background. So doing things like if you entered, you know, I'm going to update this and your physician had a blanket statement on board. And, you know, we could automatically line those two things up. It doesn't have to be a separate step it just automatically Yes. Okay, you're good. We have this checked in our records checking. We have this and this is on file, and we can do all of it. So there wasn't a lot of automation that there is now and there were maybe a couple extra steps involved in getting people either approved or making sure we had all the documents and we've streamlined all that. So it should be a very seamless process. The update itself could take eight minutes, but it shouldn't take much longer. You know, it's the eight minutes from, you know, whatever you're on now the Control IQ, and then you know, and then just reschedule it and doing the online training right before that, that's, you know, a little bit of chunk of time, but I think 35 days is pretty good. So we got approval this past Friday 13th. And we plan to roll out those emails to existing customers a week of the 13th. So it might be coming at close, but I think you can probably you could probably figure on the 35 days.

Stacey Simms 37:43
(laughs) I'll give you some grace for the holidays. I mean, the last approval was August, so we only had to worry about back to school. I'm not too worried about 35 on the dot. I did want to ask you a couple of questions from the Facebook group, the diabetes connections Facebook group, you've answered a lot of them, but I had a really good question from Tim who was asking about in the clinical trial, he said, You know, people were able to familiarize themselves with the pump in the system about two to eight weeks, I guess. So he said, what took place during that period? And how much interaction with healthcare professionals was required? So I guess the question really is, how much do I need to interact with my healthcare professional? How much do I need to ramp up and learn before Control IQ will work well for me, we've mentioned you know, there are variables.

Molly McElwee Malloy 38:29
So I think, and I think looking at that run-in phase, that was what it was called that two to eight weeks is that when you were taking people from multiple daily injections, introducing them to CGM technology, introducing them to pump technology and getting pump settings straight. So that was the longer run in period for people who were completely naive to both CGM and pump technology. And they could they could be allowed up to eight weeks, I don't think most of them completed their run-in phase much faster than that. And most people have people that already had pump or CGM or some knowledge of one or the other could go but at a much faster speed. So it was just getting them up and running and comfortable with the technology and the physician or whoever was overseeing at that site felt comfortable that, yes, this person is ready to proceed to the next step and go ahead and use an automated system. So that just allowed for all walks of life to come in and to do this trial. And that's really what that was about as far is, you know, how many connections how many touch points with an HCP. You know, I can't speak specifically to each situation. But typically, in a run-in phase when you're getting people up and running that have never used technology before, you might check in with them every couple of days and then do a download at the end of the week and then check those settings. So And I would suggest at a later time you having one of those sites, the principal investigators on to talk about the studies it’s fascinating. And they could really get into the weeds of these details, because I think Tim had a really good question about that. As far as the average person though, getting up and rolling, the big thing with Control IQ technology, is you have to have good pump settings. Right. So that may be a couple of touch points you maybe have to have with your HCP if you've never had a pump before, right? Or you're and you're just waiting for the first time. Or if you've had pretty poor settings, and maybe pretty poor Control along and you've never really sat and been like, Huh, I wonder if these are right, or your HCPs never sat down with you into like, let's take another look at this. That that may take you a visit or two but if your pump things are pretty good, you should be fine to go And then you can check in with your doctor. At your comfort level, right, like there's no recommendation. As long as you feel like you're doing well, then great.
There is a mobile app that will roll out with this. It's embedded into the technology update for Control IQ that will give people access to this mobile app, which will be available on Android and iOS. But this will allow for automatic uploads to the cloud. So the data will be going seamlessly to the cloud. You could also then see it on your phone. You cannot yet bolus from that phone or dismiss alerts or alarms. But you can see what is happening from that phone. And it will, it's a ways to send data to the portal so that your data is always updated. And so you know, your healthcare provider can check in and say how you doing and I see this is happening or I see that's happening and you can all beon the same page without actually, we go into the office or upload your pump or any of that stuff. Yeah, I believe it that process.

Stacey Simms 42:08
That was going to be my next question. But my understanding is that the phone app is going to be just for healthcare providers as it's rolled out, and then consumers can use it down the road. Is that not correct?

Molly McElwee Malloy 42:19
No. So there are two parts to this. So the app will be on the patient's phone, right. That's how the data gets the cloud. So the space is going to have visibility to their data. The data going to the cloud goes to the HCP portal, right. So that's the healthcare professional portal, the portal that we offer up to professionals so they can manage all their patients in one place. Right. So they log in, they can see data as long as you have Wi Fi available Wi Fi is both publicly and people having it at home or you can choose to use cellular data. You can send your data for the cloud every five minutes.

Stacey Simms 43:04
I just want to be clear. So when I get my Control IQ, let's say, let's say I get Control IQ by the end of January, when I get Control IQ on Benny's pump, he will be able to look at his cell phone, not do anything with it, but he will be able to view his pump data in real time on his cell phone.
Molly McElwee Malloy
Yes.

Stacey Simms
Yeah, that is amazing. Okay, so I know that many people who are newer might think, well, that's not so amazing. But I mean, after 13 years, you know, we had these dumb pumps and no CGM to have Benny be able to look at his phone and say oh is was my battery charged. Do I need insulin? You know, even the simplest things. And then the idea is down the line. And maybe you can give us a peek into the future. As you said, You can't bolus from it, but possibly someday, soon.

Molly McElwee Malloy 43:50
Oh, we are working on integrating the ability to do a mobile bolus. Yes.

Stacey Simms 43:58
All right. I'll leave that there for now because I know Talk to you another hour about it. But then my last question on the phone is, what about remote data from the pump? Can a parent caregiver, you know, friend spouse, once the Tandem information is on the user's phone, can it be shared.

Molly McElwee Malloy 44:15
So we are working on a remote monitoring feature. But at this time, it will just be available on the patient's phone, and it will be a way to get the data to the cloud. Now you could log in to see connect and look and see what's going on with Benny at school. If he's if he's got Wi Fi going. It's not really meant to be a remote monitoring system is approved for that. But you know,

Stacey Simms 44:44
(laughs) I’m just thinking of all the parents I know All I care about is is it charged and is there insulin in it, but I know a lot of people really want to see, you know, everything but that's really interesting.

Molly McElwee Malloy 44:52
It could be that you know, and then some people know how to like do the mirroring on their phone to another device and you know, there's going to be people will figure that out. And we will eventually have a formal system for that. And again, nothing is intended to be remote monitoring or you know, per share type viewing. It’s supposed to be a, you know, a secondary viewing device of seeing the data. But you know that data is going somewhere and you can log into that place. So, you do with that with whatever you want to, but you'll be able to see that data if he's got Wi Fi going.

Stacey Simms 45:32
All right. before we let you go. I have to ask you, we started this whole conversation about you talking about, you know, finally relaxing when you use an automated system in 2006. So here we are. 13 years later,

Molly McElwee Malloy 45:50
I know.

Stacey Simms 45:53
You've been using Control IQ I shouldn't make that assumption, but have you been using Control IQ?

Molly McElwee Malloy 45:58
I do have Control IQ Okay,

Stacey Simms 46:00
and I'm asking you this I know I may be limited in what you can say and I understand that. Are you as relaxed and feeling more in Control of your diabetes as you had hoped? Back in 2006?

Molly McElwee Malloy 46:15
You know and.. sorry, it makes me little choked up.
I am in a place I never knew existed, right? This is a place that I dreamed about. I'm not worried about what's happening with my blood sugar. I'm not worried. We had my daughter's third birthday this past weekend, and I didn't worry about, was my bolus enough for the cupcake because like it had my back, right? Like, I was like, if it's, you know, this more than this, whatever, it's got me if it’s less than this, it’s got me like, I didn't worry the whole day and I stayed in range the whole day and Got to enjoy my daughter's birthday without worrying about my diabetes. So that was pretty awesome. And that's where I want to live, right? Like I have other things to do. Everybody has other things to do than to try to be their own pancreas and their own organ. So let's relieve that burden and then you just interact with it with meals with exercise, you know, when you need to. It's much more of a relief than I imagined because in 2006, I was hooked to laptop.

Stacey Simms 47:35
Oh my gosh. That’s right!

Molly McElwee Malloy 47:37
Yeah, I was hooked to laptops with four IVs in my arms. And I was willing to do that. And I would have walked around like that. So this is some space age invention that never entered my mind that this could have happened but it is beautiful, very eloquently done. I have to hat tip to the engineers at Tandem, who took you know, years and years and years and years of research to work, you know, work done in neat tidy ways, right? And then put it into a system and made it this eloquent and this beautiful. Where I don't have to think about the 50 things I would have thought about before, you know, is my laptop plugged in and my plugs into the right USB port, my, you know, the things you've got to think about if you are plugged into bigger machine. Sure, like, I don't want to think about any of that. And, and during research, you know, seeing in all the different iterations. You know, we still had even we have a cell phone, we still had the fanny pack, right? Because you had to keep the receiver and the phone near each other and all this other stuff going on and the pump.
And now I'm just walking around with a CGM and a pump on and it's doing it and I don't have to worry about any additional things to keep up at it's pretty great, it's pretty awesome. This is a place that I never dreamed, I never even dreamed of. And I'm just so happy to be here.

Stacey Simms 49:10
Molly, thank you so much for joining me for spending so much time talking about this. It's been remarkable to just for the few years that I've followed along in your journey, it's been wonderful to watch. So thank you so much. And I cannot wait to get this for my son!

Molly McElwee Malloy 49:29
that I can't wait to see what you say. Because, you know, we're like to 2.0 we’ll make 3.0 We'll see what's going on. So your feedback, everybody's feedback is so valuable.

Stacey Simms 49:40
I would have liked to have ended on that emotional note that you have there. But we do have to say, for for many people who have been in this community for a long time, who are emailing you and me saying, Why can't I get the target under 100? Why cant I do this? I want this feature. I want that feature. It's not that they're that people are greedy. It's just that you know, you know we all we all want this so badly. It's a great reminder that this is the first step. This is this is the beginning of the automation. So, you know, I want it all too, but I get it. And I just think it's fantastic. So yeah, this is this is the first one with Tandem. Let's see what happens to the future. So gosh, it's so exciting.

Molly McElwee Malloy 50:21
It really is. And I could say to people who want to customize everything, want to do everything good. Look, the future is coming. And it's coming faster than we then we could have dreamed up and I realized we waited a long time. Trust me, me of all people. I know how long we have waited. But this is a really solid system that we get to build upon. It’s going to be a phenomenal ride. Like I would invite them to try it. See if you can relax a little and see if it brings you any kind of peace of mind. And then we'll work on getting the targets exactly where you want them.

Stacey Simms

So much more information on the website please check it out. And I know many of you have unanswered questions you know you really want to do a super deep dive you want more we will dig into the research as Molly mentioned, I promise we will do mentioned I promise we will be doing follow ups on this as a tandem family. You know, we'll have Benny fool around with it. let you know what he thinks I'm hoping to get him to do a review. As soon as we get control IQ, which, you know, we're not jumping the line, we're there with all of you. So hopefully by the end of the month, beginning of February, I'm really hoping that we'll have control IQ on his pump.

And, you know, that brings me to just a quick personal note on Ben, he was diagnosed 13 years ago, in December. So December of 2006, is when we heard those words, you know, your child has type one diabetes. And I remember a few bits of information from that day, we were not told, thankfully, we were never told, oh, the cure is five years away we were we were never told that and I had been a medical reporter for many years, and I'd covered type one diabetes. And I'd actually covered failed products like the gluco-watch and things like that. So I had my my knowledge around me and I knew there was going to be no cure in the next five years. So we didn't have that. But our endocrinologist did tell us that the artificial pancreas was in the works. And he said three to five years. And we would probably have that. And I have been hopeful, you know, cautiously optimistic, I didn't hang my hat on that. And I knew we'd have to learn to live well with diabetes without an artificial pancreas. But when I think now to 2006, knowing that that is when Molly, within that trial, and other people that I've been so lucky to meet and talk to, since people like Tom Brobson, so many people at JDRF, who were involved in the early early artificial pancreas project, , it kind of boggles my mind to think that I could go back to Stacey in 2006 in that hospital room and say, Look, it's not going to be here as soon as you hope. But your son's going to be fine. And you're going to get to talk to these people that right now are testing it out. I mean, to me, it's just wild. And more importantly than than me still me getting to talk to all these people much more importantly, is that the people with type one as you listen my son get to use it. I'm so excited for control IQ. I'm so excited for anything that takes any bit of burden away from people with diabetes. I'm not looking for the world's lowest A1C? I really know that I am looking for a healthy A1C  that lets my son lives a life he wants without diabetes being a pain in the ass without his mother texting him 400 times a day did you bolus Did you check? Right all that nagging stuff? I don't want him thinking about it 24 seven.

When you talk to people who loop when you talk to people who've used open APS, right, these do it yourself systems. Their first response to you isn't, look at my fantastic A1C, although they're usually very good. It's, well, I get more sleep. Wow, I think about diabetes less. Wow, I worry about my kid less. And that, to me is what it's all about all of these decisions. I’m getting emotional thinking about it. All of the decisions that everybody who has diabetes, forget the parents that the people with diabetes have to make and that burden that is on you. I hope systems like this. Just relieve it a little bit. It's a good first step. It's not the end there is a long way to go. But that's what I am hopeful for. Okay. But that's what I am hopeful for.

And I know that I'll hear from you. You wonderful do it yourselfers who will be figuring out ways to you know, hack the sleep mode and change the exercise mode and figure This stuff out. So we will move forward with lots more information in the weeks and months to come. You know, I don't have a way to wrap this up with a big bow. I don't have a way to end this year by, you know, saying something incredibly motivational and giving you a boost into the new year. But I do have to say that it's so exciting to end 2019 with the approval that frankly, I've been waiting for all year, and I know many of you have as well. And seeing that as another step forward. And looking forward to 2020 and what may come.

Our next full episode will air on January 7, but later this week, I'm going to be releasing a new minisode I'll be doing more of these in the new year just really short episodes where I share some thoughts or some advice. love to know what you think about all that.

Big thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. wishing everybody a happy and healthy New Year. I'm Stacey Simms and I'll see you back here in 2020.

(disclaimer)

At times I mentioned tandem diabetes care. However, I am not compensated by tandem for my actions. And tandem does not support or control this content. I have created the content and it is based on my personal experiences and observations.

Transcribed by https://otter.ai

Oct 1, 2019

One Drop made a name for itself with a beautiful design; this summer it became the only diabetes devices in Apple stores. But founder Jeff Dachis says that the mission goes far beyond looking good.

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Jeff explains all that One Drop does and shares his frightening diagnosis story. We also talk about his past as an early internet innovator.

Order Stacey's Book - The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child with Type 1 Diabetes

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00:00 What's on this week?

Stacey welcome: Stacey mentions that two episodes ago she profiled Carson Wedding and said that she was the first person to use the DIY Omnipod Loop. As it's hard to determine exactly who's "first" in the DIY crowd (and not really necessary), Stacey corrects that assertion.

Interview with Jeff Dachis

Tell Me Something Good

Stacey shares a story about watching Law & Order with Benny - the episode was an awful one about using insulin in a very weird way.

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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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Sep 17, 2019

Would you ask your teenage daughter to be the first to try a new DIY diabetes method? Carson's family did. She's been Looping with Omnipod since last fall; as far as we know, she's the first person to do so.

Pre-order the World's Worst Diabetes Mom, Stacey's New Book!

We’ll talk about being a loop guinea pig, how her parents are doing and more. 

In our Community Connection this week, Stacey talks to Dave Peterson, the GM of the Worcester Bravehearts about his diagnoses with type 1 as an adult.

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Learn more about Open Omni

Learn more about OpenAPS

The Nightscout Foundation

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And tell me something good an intern gets called in to see the boss.. for a great reason.
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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Show open: what's on this week?

Stacey Welcome:

Interview with Carson Wedding

Interview with Dave Peterson

Tell Me Something Good!

See you soon - Stacey talk about events (find more 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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Get the App and listen to Diabetes Connections wherever you go!

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Aug 20, 2019

Insulet CEO Shacey Petrovic joins us for the first time and talks with Stacey about what's new and what's coming next. Petrovic shares the latest information on Dash, Horizon, Loop and more.

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Shacey also has a personal connection to type 1 diabetes: her father lives with it. She and Stacey talk about the dynamic of caring for a parent with T1D and how technology is changing that.

Vote for us in the Myabetic Diabetes Awards!

DiabetesMine Dash Review

Omnipod Horizon studies

In our Community Connection a little bit of a change from the AADE Conference, they want to change the name Certified Diabetes Educator (CDE) to Diabetes Care and Education Specialists.

And in tell me something good.. an honor for a school – thanks to a big gesture from a little kid.

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00:00 Show open: what's on this week?

1:30 Stacey Welcome - back to school! Listen to our interviews about the ADA Safe at School program here 

4:00 Interview with Insulet CEO Shacey Petrovic

39:30 Community Connection: AADE Conference update

43:00 TMSG: We made the finals of the Independent Podcast Awards!

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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

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