T1Detect: A New At-Home Test For Type 1 Diabetes
Release Date: 12/29/2020
Diabetes Connections with Stacey Simms Type 1 Diabetes
Raising teens with diabetes can be very difficult, but there's a lot parents can do to make it less stressful. This week's guest has advice because she's been there. Moira McCarthy is the author of Raising Teens with Diabetes and she shares how a very tough time with her daughter, Lauren, taught her what these kids really need. The secret? You might think it's better technology or a certain diet or even discipline, but as Moira explains, it's compassion. Lauren is all grown up now, with a great job and a life far from home. She and Moira have a terrific relationship and she very...info_outline DIY to FDA: Howard Look Explains the Tidepool Loop Submission
Diabetes Connections with Stacey Simms Type 1 Diabetes
Right now, the very first diabetes technology with roots in the do-it-yourself community is in front of the FDA. Tidepool CEO Howard Look joins us to talk about what, if approved, will be a prescription mobile app controller: Tidepool Loop. We get details on the submission, including everything from how you’d actually get this app to whether you’ll be able to set your own blood sugar target ranges to which devices Loop could work with, international possibilities and much more. Howard mentioned Tidepool documents. In Tell Me Something Good a teenager with type 1 has a big idea about a...info_outline "Educational, Comforting & Really Fun" - The Story Behind Jerry the Bear (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
You may know But this learning and companion toy for children with type 1 diabetes got his start as a college project. Ten students from Northwestern University entered the first every DiabetesMine Design Challenge back in 2009 and won the most creative design. A few of those students continued on and – as you’ll hear – started a new company called Sproutel. In addition to Jerry the Bear, This interview with Sproutel CEO Aaron Horowitz and Chief Creative Officer Hanna Chung first aired in November 2015. This podcast is not intended as medical advice. If you have those kinds of...info_outline "We Must Change This" - Advocating for Type 1 Diabetes and COVID Vaccinations
Diabetes Connections with Stacey Simms Type 1 Diabetes
As the COVID vaccine roll out continues in the United States, many people with type 1 diabetes feel like they’re in danger of being left behind. Why is this happening and what can we do about it? Hear from long-time advocate Paul Madden. He's lived with type 1 for almost 60 years and he's been fighting for the rights of people with diabetes almost as long. Stacey & Paul talk about what the science says about COVID and all types of diabetes, why the priorities are different state to state and what we can all do to be better advocates. In our Innovations segment this week, and This...info_outline "Ultimately, it's not going to hold me back" - Phillies General Manager Sam Fuld (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
The Legend of Sam Fuld was born during his days in the minor leagues and when he played for the Oakland A's and in Tampa Bay. It involved his wild dives and seeming willingness to do whatever it took to make the play. Earlier this year, Fuld became the General Manager of the Philadelphia Phillies. Sam Fuld was diagnosed with type 1 at age ten and first spoke to Stacey in 2016. In this classic episode he shares his story, what he did as a player to manage his blood sugar, and This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care...info_outline From Discouraged to Inspired: Meet Chronic Superhuman Eric Dutcher
Diabetes Connections with Stacey Simms Type 1 Diabetes
Eric Dutcher is one of the super athletes of the diabetes world. He even calls himself But he spent years years thinking diabetes meant that he shouldn't be active, and he admits he got pretty low. Eric shares how he found his way to a brighter - and incredibly active - future. He's now a big part of the and is training for an Ironman race later this year. More in this episode on ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!info_outline Spare a Rose and a Game Show! (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month. This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show. Find out more and...info_outline "Hey, you're like Daddy now" - When a child is also diagnosed with T1D
Diabetes Connections with Stacey Simms Type 1 Diabetes
Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well. Now, two years later, Chris is jumping back into the online community via and a . He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D. In Tell Me Something Good, And some new books are our for the littlest ones of...info_outline "We Need More Dorks" - NASA Engineer Ernie Prado (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story! This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the...info_outline Learning More About the Lilly Diabetes Insulin Pump
Diabetes Connections with Stacey Simms Type 1 Diabetes
When Swiss pump maker Ypsomed launches brings it's business to America, likely in 2022, it'll be with Lilly Diabetes as their partner. The Ypsopump will be the first pump in the US that only takes one brand of insulin. This week, we spoke with Mike Mason, president of Lilly Diabetes about that decision, more about how the actual pump system will work and their timeline. Stacey also talks about how they were able to use a coupon to keep Benny on humalog - it wasn't as easy as some have said. And she has advice to make it work for you. Plus, new A1C guidelines for kids with diabetes. This...info_outline
Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes.
And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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!
Stacey Simms 0:00
Diabetes Connections is brought to you by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings.
Frank Martin 0:36
We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning.
Stacey Simms 0:49
Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes.
And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show.
And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that.
I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right?
Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it.
Dr. Martin, thanks for joining me.
Frank Martin 4:10
Thanks very much, Stacey. It's good to be here.
Stacey Simms 4:12
Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it
Frank Martin 4:21
first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue.
So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect.
Stacey Simms 5:49
All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short,
Frank Martin 5:55
short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so
Stacey Simms 7:34
let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet
Frank Martin 7:38
in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would
Stacey Simms 7:55
think you know, you're not you're at home. You're not in a sterile lab. Yeah.
Frank Martin 7:58
Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard.
Stacey Simms 8:27
I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming?
Frank Martin 8:54
So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces.
Unknown Speaker 9:52
So let's get back to the test itself.
Frank Martin 9:54
Stacey Simms 9:54
What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right?
Frank Martin 10:03
It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it.
Stacey Simms 11:46
Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that
Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar. Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke. logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one.
Frank Martin 12:59
When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for.
Stacey Simms 13:40
I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box,
Frank Martin 14:01
right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program.
Stacey Simms 15:17
So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's
Frank Martin 15:34
gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible.
Stacey Simms 16:37
I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done
Frank Martin 16:53
this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk.
Stacey Simms 17:12
You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one,
Frank Martin 17:19
it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't have that sorted out yet. But they will have it and they expect to have it next couple of months, it's not a big deal to not have it right now, we can almost definitively say based on the results of this test whether or not you'll become insulin dependent over the course of the next couple years, z nta. The fourth one just helps you make that a little more sensitive. And it's just one of the things that we could add on going forward. Right now we're focusing on auto antibodies. But there's other things that jdrf research is trying to develop that might improve our detection of risk in the population, things like genetics, things like metabolic factors that we just haven't the science isn't done yet. In the future, you'll see things like that, I hope being rolled into programs like ours,
Stacey Simms 18:12
when I was tested for I went through testing for trial net when I was young enough to go through testing for trial that but I kind of did it just to see, right we did not have type one in my family that I knew anything of a couple of years later, one of my my cousin's was diagnosed at age seven or eight, which is older than my son. But at the time, we knew nothing. But I never had my daughter tested. Because at the time I looked at it as well, if she's going to get it, I'm going to know the signs. Now. I wasn't worried about decay or anything like that. I wasn't thinking about the research aspect at all. Can you talk a little bit about why trialnet or G one detect why these are important to look at? Not just as Do I have it or not? but more of how can we prevent or treat type one?
Frank Martin 18:55
That's a good question. Well, first, let me say that you speak about why you got tested Why you didn't test your daughter. A lot of TMD parents say that? Well, I'm going to see the signs and symptoms of diabetes coming on before it gets so serious that my child's in a hospital. That's not always the case. Right. Now, we see a lot of people saying that, but the science doesn't support that. So that's one thing. We're trying to prevent a serious hospital event that might occur diagnosis. This is what trial nets doing this is what other screening programs are doing. Second, there's a thought that there there's nothing I can do if my child is found out to have early stages of type 1 diabetes because they have these auto antibodies. And that's not necessarily the case. Because one, we know that there's really important monitoring that can be done in the hospital setting a blood glucose test something as simple as that, that can be done periodically, that could reduce very significantly, the chances of that child having DK also insulin therapy can start earlier because remember, just because you've auto antibodies in no symptoms, that doesn't mean you don't have to end you have T one D. And that means you're going to need insulin therapy sooner rather than later. So it really doesn't benefit people to wait on that. That's something to discuss with your endocrinologist. But starting that earlier actually is beneficial for all people at risk. Third, there are soon going to be ways I hope to intervene. Next year, we may see the approval of the first therapy that can delay insulin dependence in people with type one diabetes, a drug called to plews, a map from a company called prevention, that will be a really important first step in curing this disease and stopping it from occurring at all. And then to get at why would we screen more people, we know that developing new curative therapies for people to end Well, that depends on people participating in clinical trials. Now, I'm not I'm not saying we're doing this, because we want to put people into clinical trials. But the fact of the matter is that programs like trial net and other screening programs here in the United States or in Europe, are not identifying enough people to make these clinical trials go fast enough. That really slows down to development of new therapies for T one D. So one of the benefits of a program like this is to further increase the number of people who are aware of clinical trials. And we hope that that'll increase the development of new therapies. And also pharmaceutical companies will start to see, well, there's actually a lot of people out there clamoring for a treatment or a cure for this disease. Maybe we really need to be doing something about that. So it should get their attention pretty significantly.
Stacey Simms 21:31
We've been talking about trial net this whole time, why not just team up with trial net? They've been doing it. They're the ones that developed the trials for two prism and got it this far, right? Why try something new.
Frank Martin 21:43
So what Tron does is amazing, what they've done over the last 30 years is amazing. They've charted the progression of T one D, and they've led to the development, I hope that the first real therapies for T one D, we could keep funding research studies till the cows come home and have not made any progress towards our goals, our goals of having auto antibody screening as part of normal preventative services, to have auto antibody screening as something that that insurance companies will reimburse for. So what to detect, we hope will do is force those changes into the US healthcare policies to incorporate that into normal preventative services. We're also not restricting our program to certain ages, or to just family relationships. We'll try that does great, it's a really important model to say how can we find the most people the quickest, or the highest risk of type 1 diabetes, and we know that people who have a family member, especially a first degree family member, that has type 1 diabetes are at some of the highest risks in the population. So it's a really good way to quickly identify the most people you can, but it doesn't capture everyone. We're not capturing adults, almost 50% of people being diagnosed are adults. And we're not capturing that in programs like trial net, and almost 85% of people don't have a family member. So we're not capturing that in trauma. So by us doing something like to detect in parallel to trial that we're trying a different tactic that will hopefully get us both to the same goal of increasing the numbers of people available for clinical trials of changing clinical practice guidelines, things like that. And the fact of the matter is, you know, the people we identify in our program, are candidates for trial that hopefully will we feeding that ecosystem as well, with with our program, just to put a cap on it,
Stacey Simms 23:32
it is different, it is distinctive, the testing, I mean, even the trial net, the way that they test you is not a finger stick? No. So it's just a different process altogether.
Frank Martin 23:41
It's a different process altogether. So we also, we want to make sure that our tests had a type of kit or acid that anyone could use, that you didn't have to be near certain place for the test to be done, or you didn't have to wait too long for the thing to come in the mail. So there were certain boxes, we have to check with our tests that we thought were important for making it readily available to the most number of people as possible. And those were things like it had to be a commercial style kit, it had to depend on a blood sample that was really, really small, and really, really stable on a cardboard. Yeah, cardboard piece of paper that's sitting on my floor. My dogs are walking over it, but it's okay, cuz I can send it back and it'll be still fine. So there were a couple things we want to call boxes. We want to tick there.
Stacey Simms 24:26
I went through the website a little bit. I didn't go all the way through it. Okay, I'm curious. I will probably order it, you know, just to kind of see maybe I'll get my daughter to go this time. But I'm curious what happens to the information. You know, am I signing and saying jdrf knows this medical company knows. Talk to me a little bit if you could about the confidentiality.
Frank Martin 24:44
Did you look closely enough at the bottom of your webpages? Of course not, of course, not.
Stacey Simms 24:50
The terms and conditions.
Frank Martin 24:52
Exactly. So that's something that's really important, right? Because what we're talking about now is people's personal unprotected health. information, it's a test result. So we have to make sure that that is safe and secure, and that the person has choice and how that data is used. So you'll see at the bottom of the portal, there's certain disclosures opt in language, you have to agree to share your data with jdrf, or the company enable, we also have if you read the terms and conditions, if you agree to share your data with jdrf, we agree to protect it, we won't let anyone else use it without your permission, we'll only use it to improve the program, or to maybe facilitate future research studies. Because the data is going to come out of this, it's actually really important to see where people live and how old they are, and what ethnicities they are, as it relates to having auto antibodies. That's really valuable information for the research community. So we want to ensure that that data is available to them in a way that protects the person's rights. So pay attention to those little boxes at the bottom. But know that jdrf is working to ensure and will ensure that is used safely and to your best interest.
Stacey Simms 26:12
Well, and I'll give you an example. So in other words, I am great with research, political scientists can have all my data that's fine. And jdrf can have the data. But the last thing I want is for jdrf to say, Hey, Stacey Simms wrote a book. And we're going to give Stacey all of this information for trial on that because here's a whole new customer base for her.
Frank Martin 26:29
So that's not going to happen. We're not allowed to do that. No, if we were given that opportunity, Stacy, we would have the right to you and say, is it okay that we're sharing your data with Stacey Simms? And you'd have to say yes or no, we're making sure we can't do that without your permission.
Stacey Simms 26:45
And we would never share Stacey Simms. She
Frank Martin 26:48
never, never very bad influence. I mean, we know that already.
Stacey Simms 26:53
aside, I'm really glad to hear that that's one of the
Frank Martin 26:55
Yeah. And this is like maybe Jay dress first foray into having access to what could be protected health information. So we have to make sure that the patient's rights are front and center. And that's protected in any way we
Stacey Simms 27:10
can, as we see the rollout of this you've mentioned we'll see social media, you're trying to appeal to more than the the jdrf families, you know, the families that are already at the walks and virtual events this year, what would be your your ultimate goal? You know, personally, would you like to see this in pediatricians offices in the next few years? Would you like to see it at as you say, you know, Web MD, check a box here? What are you hoping for?
Frank Martin 27:32
There's Frank, personally. And then there's Dr. Frank, who works for jdrf.
Stacey Simms 27:37
All right, let's start with Dr. Frank,
Frank Martin 27:38
I actually would say both are the same goal, we really would like to see this as a normal part of preventative health care, so that when you're taking your child to a pediatricians visit, they normally would get a blood test for something at age two or three, we would like to see this included. So that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence, so that we can intervene earlier into these people, we can improve their health right at the beginning, that holds true to children and adults. There's a lot of adults who are mis diagnosed with T two D, but they really have T one D. So we want to make this available to all doctors, not just pediatricians and just become a standard part of healthcare.
Stacey Simms 28:24
I have to ask about cost. I know you've said that you are subsidizing it's only $10 if people cannot pay the 50 or $55. You mentioned but that's still a barrier, isn't it? And is there a goal you mentioned health insurance isn't one of your goals to try to get that covered fully?
Frank Martin 28:40
It is so with our big goal or my big goal and address big goal of having this included in as standard care and preventive services worldwide. That includes reimbursement. So what I almost envision is sort of like inflection point where Jeff and his partner should be able to float the cost of the test. And then eventually, insurers will start reimbursing and reimbursing or reimbursing that we sort of meet in the middle. And cost won't be a barrier. I'm acid that's going to take some time. Stacy, don't take some time. But it's right now people can take the receipt and try and get reimbursed for it. We really don't know how many companies will reimburse for this. And we're expecting that they'll have a lot of inquiries about this next couple of months. And we may have to have some phone calls with some of these insurance companies and deal with this issue. jdrf right now is working with our own insurer, the one that handles jdrf staff to see if they can include this as a reimbursable test.
Stacey Simms 29:35
Yeah, because I'm gonna I'm gonna ask a question. And this is a tough one to ask. And I know it might be tough to answer. But without that, you know, you're going to get a subset of people taking this test, who are largely affluent, who are largely educated, better educated about diabetes, certainly, who are perhaps mostly white, upper middle class, all of those things that we know we need more, you know, we know we need more diversity in research and in diabetes. So I know you know, it's important, but I felt like it's really important that we talk about that. Are you prepared for that that first subset of people that you get to not be as diverse as you would hope
Frank Martin 30:10
we are? I'm not expecting it to be the case. But it could be the case. And so one of the benefits of this program is that we'll see the data, we're asking for demographics, we're looking for where people live. And if they offer it, they'll give us their general salary, ranges, things like that, we'll see how that matches up with who's getting the test. And then this program can pivot, we can then take that information, say, oh, we're not penetrating the right population, we're missing out on a subset of people who might be no socio economically disadvantaged, we need to change the program to better target those people. And we can just turn pivot and do what we can to get those people because our goal is really access for everyone. Yeah. And so we will be consistently monitoring the program to see how we can best target these other populations.
Stacey Simms 31:00
And I imagine there were a lot of conversations inside jdrf, not just about the funding, or the the cost for the people taking the tests. But there's a lot of hard choices going on at jdrf. Right now, in terms of what programs to fund. Before we wrap it up. Why was this one more important than other programs and employees and you know, chapters have merged, it's been a very difficult year. So to have something I got to imagine this was really important to you all.
Frank Martin 31:22
So it's super, super sensitive question. These, this has been a tough year for us, we lost staff, we lost revenue, we had to make some really significant hard choices about what research we fund through all that screening has still maintained a major priority of the organization because it contributes to so many of our other programs that will accelerate disease modifying therapies into people's hands. That being said, this particular program, I mentioned before lives outside of the mission lives outside of the research mission is more community engagement, patient education, things like that. We have a partner on this. So we have a corporate partner to help subsidize the cost of the program. And we're going to solicit hopefully solicit support from other partners to make this sustainable in a way that it doesn't detract from our core mission of funding great research. So I do want people to be cognizant, this is slightly a separate program that jdrf manages, but it's really not impacting our bottom line of fundraise dollars going to the best research. This is stuff that we're soliciting. In addition, specifically for this program, we wouldn't be able to do this without our corporate sponsors, the first of which is prevention. And we hope to add more to the program in the next couple months. This is a disruptive program. We know people have a lot of feelings about this both good, bad somewhere in the middle. If people had those feelings, have those questions, they should reach out to us. We're happy to hear them to learn from them, and maybe improve or modify the program. And we're happy to answer any question. We have high hopes, we really hope that this will make some big changes for the lives of people with to end. And it may not happen immediately. But it should start happening in the next couple of years. We're excited. We hope other people are excited about this, too. Well, thank
Stacey Simms 33:06
you so much for joining me to spend so much time and talk about this and explain it so well. And hopefully we can follow up and find out how it went a couple years.
Frank Martin 33:15
A couple years. couple months. All right. Great. Thanks, man. Thanks for taking the time to talk to me. And listen, if you or your listeners have any questions, send them our way.
Stacey Simms 33:25
You got it.
Unknown Speaker 33:31
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 33:36
If you do have questions, feel free to send them to me. I think I'll put a post in the Facebook group, you of course, can contact jdrf directly, but I'll collect those. And I'll send them to Frank, and we'll get follow up, hopefully. So what do you think of this? Would you send away for it? Would you take it with you have your children take it? And what do you think about getting this to the greater population, I mean, that is where it really needs to be. I think if we can somehow screen for type one like they do in some European countries, they've started these screening programs where everybody of a certain age starts getting these screening tests for type one, I think that would be incredibly helpful for all the points that Frank made. So I'm really interested to kind of follow this and see how it goes.
Of course links as always at Diabetes connections.com on the episode homepage, and all the information that you need will be there in the show notes if you're listening on a podcast app a little bit about the end of this year, and a look ahead to next year in just a moment.
But first Diabetes Connections is brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share there was no share when he got Dexcom. So trust me when I say using the share and follow apps really makes a big difference. Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of stuff. But overall it helps us talk and worry about diabetes less and if he's at a sleep over or away. It gives me so much peace. of mind, it also helps. And I love this part if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours, and not just at one moment in time. And that really helps you figure out what steps to take the alerts and alarms will be set also help us from keeping the highest get too high, and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow AP To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.
I don't have anything profound to say about 2020 we have all been living this great awful together. longtime listeners have been going through it week by week with me here on the show. We've had some incredible conversations with us you listened some great zoom calls, some episodes, I put together with your thoughts as I interviewed listeners. And you know, it's really not as though the calendar is going to turn to January 1, and then everything's gonna be fine. You know, it's gonna be a long time. And maybe not ever before we go back to before, I'm not sure that life will ever be exactly the same as it was before COVID.
But I do want to talk about just a few things that I'm thankful for a few things that have been a bright spot this year, when it comes to diabetes, control IQ has made a huge difference for Benny this year, I'm so thankful I'm really happy that the technology works as well as it does for him. And that we can afford it, we have access to it and we can afford the insulin that goes in it.
I'm really thankful for my local group, we have tried to be there for newly diagnosed families. I mean, you know, we have a big Charlotte group, I've run a I run a Facebook group of seven to 800 families, it's 850 families at this point. And usually we'd be you know, we'd be hugging these new families would be crying and laughing and coffee shops and the kids would be meeting and homes and things like that and playgrounds. But we did our best on zoom. And in Hangouts.
We have a lot of healthcare workers in this audience listening to this podcast, and boy, are we thankful for you, boy, do I salute you. I cannot believe how this all started off with everybody together applauding healthcare workers, I mean, literally right, making noise in some cities and banging pots and pans. And it ended with so many people not in this audience likely, but so many people openly define precautions and not taking things seriously, which puts more of you, you healthcare workers at risk. So stay safe, please know that we are thinking about you. And we do. Thank you.
And to that end, I am very thankful and very excited that in our next bonus episode, we are going to be talking to healthcare providers with type 1 diabetes who have received the COVID vaccine. We're going to get their reactions to it and their messages about it. This is hokey, but it's true. I'm getting chills talking about this, because I've already done a couple of the interviews. And they're all talking about the hope that they're feeling. We do have a long way to go. But man, it's this this feeling that we haven't had for a long time. That episode is scheduled for New Year's Day, because I want to start 2021 off with some good news. I want to start it off, right? I'll post on social media if there's a change in scheduling or something happens. But right now, that's coming up on New Year's Day.
Quick housekeeping little bit before I let you go, look, we're going to be technology heavy in 2021. On this podcast, you have asked for that you have shown by your downloads your interest and your requests that you want to hear about the latest and greatest in technology. I'm not gonna stop doing the personal stories, but we are going to have an emphasis on pump companies CGM, what's coming down the pipeline, that sort of thing. Because of COVID delays, I think we're going to see so much technology news, this coming year, I mean, new releases, new partnerships, and more, because there was supposed to be stuff happening this year that got pushed off. And of course, there was stuff that was already scheduled for 21. So there's gonna be a lot to talk about. I'm very excited to bring you a lot of those conversations. It's really cool to talk to some of these companies and find out what's coming down the road.
We do have returning sponsors, I want to mention that and thank them very, very much, my friends at Dexcom and Gvoke are going to be with us for the new year. And we are going to be joined by a new sponsor Dario I can't wait to let you know more about them. Some of you probably remember them there, the nifty meter that kind of goes right into your phone. But there is more to them than that, although that is pretty nifty. So we're gonna be talking with them and, and bringing you a lot of stories and information from Dario.
But thanks to all of my sponsors cannot do this show. without their support. I guess I could run a Patreon or SQL to donate but I think that you will do enough and I want this show to be free. I don't want anyone to have to pay to listen to it or feel obligated to send me a donation there are much better places to donate. So huge thank you to the sponsors that help me do this and devote the time that's needed to do it right. And again Dexcom, Gvoke and Daario. Please visit their stuff on my website. Check out their posts when we share them and support them if you can.
I do have some other new sponsorship opportunities by the way so if you're listening in have a business that appeal to this amazing audience, this incredibly engaged, educated and fabulous audience, just let me know.
And finally, I am pivoting in 2021 to do something completely new for me. And it is not diabetes related. Oh my goodness, I'm not stopping the podcast. We are full steam ahead. But I am going to be teaching other people about podcasting. I am so excited about this. I've been doing this at conferences for a couple of years now. I've been doing a lot of one on one. And I finally decided to pull the trigger and do this as a business hub. Boy, all right. I won't be talking too much about that here. But if you follow me on social media, you will get all of the info. And if there are new ways to follow me you'll you'll find them all there.
All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. You know, you mean the world to me and that I think doing this show is really a privilege. I'm thrilled to be doing it for another year. I can't wait to jump in. I'm Stacey Simms and I will see you back here in 2021. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged