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.
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Stacey Simms 0:00
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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
It's our annual game show! Based on NPR's Wait Wait... Don't Tell Me, Stacey invites panelists to try their hand at diabetes trivia, bluff the listener and limericks. This was first presented at the Friends for Life Virtual Winter conference where the audience played along via online BINGO.
Watch the show on our YouTube Channel
Special thanks to our panelists: Lauren Lanning, Justin Masterson and Chelcie RIce!
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Episode transcript (beta version - check back for proof read version)
Stacey Simms 0:00
Diabetes Connections is brought to you by Jeeva Chi popin 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
Welcome back to another week of the show. I am your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, a different sort of episode this week, because this is one of our game shows. I do these periodically for live audiences, usually at conferences and that sort of thing. And this year, we have kind of like everybody repurposed things for virtual. And so this time around, it was friends for life and their virtual winter conference. A couple of quick things. If you prefer to watch this is on my YouTube channel for the show. It's just Diabetes Connections over on YouTube, I will put a direct link in the show notes. And while it is kind of fun to watch these things, you don't really miss that much just by listening. In the trivia section. I will say there are three questions that are show and tell. But I do describe what the guests are seeing. I think you'll easily get it even if you're just listening. As always contestants are selected at random from the Facebook group from Diabetes Connections, the group, so make sure to join me over there because we do this now a couple of times a year, especially with everything virtual and people on zoom. It's so much easier to record these than in the past. I still really love doing it live and I hope to do that someday again soon. But in the meantime on with the show, recorded in November, and played at friends for life the first weekend of December 2020. Welcome everybody to wait, wait, don't poke me the diabetes Game Show. If you have heard the NPR version of Wait, wait, don't tell me. This is our version. So we apologize to NPR in advance. In this session, you are going to meet some terrific people living with diabetes or who have diabetes in their families who have gone above and beyond to help the community and we're going to have a laugh or two, probably at their expense. Wait, wait, don't poke me. We'll feature trivia bluff the listener and much more. But before we get to the games, let's get to our panelists. We'll do a quick intro and then we will get started. So first let me bring in Justin Masterson. Justin Hi, I first met Justin, when we were talking on the podcast about his walk a mile cards and exercise and empathy, a teaching tool to help those with diabetes understand a little bit about what people with diabetes go through every day. Justin's daughter was diagnosed with type one when she was five. She was diagnosed on her birthday. Yeah, he is in charge of strategy at seek a market research firm. Fell old is your daughter now just
Justin Masterson 2:55
she just turned 11. So her birthday was just a few days ago,
Stacey Simms 2:58
when she was really diagnosed on her birthday.
Justin Masterson 3:00
it well. She fell on her birthday, but we got there the next morning. So it was technically the day after but she's now been six years and and living very well.
Stacey Simms 3:11
That's awesome. All right. Well, we will hear more from you for sure. I want to bring in Lauren laning and Lauren is a familiar name and face to many people and friends for life. She's been there usually at the first timers since the very first ffl in 2000. She used to run registration at the elementary program now she leads the moms and the first timers. Lauren's daughter Monica was diagnosed in 96. And she has been I can say first and amazing at these muffle meetups. We've been doing boring. The muffled meetups have been awesome. Thank you. Oh, I
Lauren Lanning 3:45
love them. It's great. It's great being able to connect with the fit.
Stacey Simms 3:50
Yeah, so your daughter was diagnosed in the 90s. How was she doing now?
Lauren Lanning 3:54
She is doing great. She's 20 she'll be 27 in a couple weeks. And she's at p in PA school at Stanford right now. Gotta brag. Wow.
Stacey Simms 4:04
Yeah, go for it. That's awesome. And rounding out our panel is Chelsea rice. I Chelsea, he was diagnosed with type one as an adult at the age of 25. He's been part of the diabetes community since I can remember. Chelsea is a stand up comedian who doesn't just talk about diabetes, of course, but he has been honored by diabetes forecast Magazine as one of their people to know and he has brought much needed education and humor to groups like healthy voices and Chelsea, your you've really found a talent this year for making soap. I've been seeing all this beautiful soap.
Chelcie Rice 4:37
Yeah. I've been locked in the house for quite some time. And so, you know, you get stuck with the phone in your hand and you get started looking at YouTube is like, you know, you take a shower, like you make stuff. So it's I mean, and that was like I and it's something that I that I do, if I see something that I get interested in Figure out. How do you make it? So that's how I even started. That's how I started baking. barbecuing. All this stuff is just like I just, you know, try to figure out okay, how do I do this? And so it just, I just picked it up and is is really kind of easy. And the funny thing is when I started just posting pictures, I was like, hey, how can I buy something like you know what I put in his name? I'd be like, you don't even know me.
Stacey Simms 5:29
The soap looks gorgeous knows. I actually thought it was I thought it was food when you were first.
Chelcie Rice 5:33
Yeah, no. That's the funny thing about soap is like, I mean, people talk about it. Okay, I've joined some soap groups on Facebook.
Justin Masterson 5:45
That is such a quarantine thing to say. Yeah, join some soap groups on
Chelcie Rice 5:48
Facebook like and that's the thing is like people were saying like, Okay, well, you know, people are quarantine now they're at home and they learn how to cook more than like baking sourdough. Random like, wash your hands with sourdough. I can make them fortune over this. So
Stacey Simms 6:03
all right, well, as we move on here, you are each playing for a contestant who has been selected by random from the Diabetes Connections Facebook group. So let me tell you, who you are playing with and for and we thank them very much. So Michelle Briggs is playing with Justin. All right, Michelle. Yeah, fi Comstock is partnered with Chelsea. And Caitlyn states is with Lauren. So no pressure. But these very loyal wonderful podcast listeners are counting on you. Alright, Caitlin.
Unknown Speaker 6:40
money involved? Am I gonna, ya
Stacey Simms 6:43
know, hey, look, it's all virtual be tough to get Oh, well, yeah,
Unknown Speaker 6:45
Stacey Simms 6:46
So we're gonna start with trivia. And each of you has five questions. I'm going to know we'll take one person at a time we'll go through the questions. Don't chime in with the answers. But feel free to chime in if you have a comment or something you'd like to add. Or if you have personal experience, these are all diabetes community questions. They're not all about diabetes, which will become clear and write it Don't worry, don't worry, it's not, you're not going to be judged. I also do have some show Intel because we're at home in my office. So I thought why not? pull some stuff off the shelves and ask you about it. Alright, so we're gonna start with Justin. Everybody ready? I would stare at the clock if I had one. But hopefully we'll just we'll we'll just let you know when you're at a time. All right. Our first question comes from the field of sports. NFL tight end Mike Moore. I'm already messing up. NFL tight and Mark Andrews has type one. And he plays for the Ravens. He keeps a strict diet around games reportedly eating for eggs before every game and the same kind of sandwich the day he plays. And the night before. This sandwich is a staple of school kids. What is it?
Unknown Speaker 7:57
Justin Masterson 8:00
My school. We ate a lot of chicken fried steak and salsbury steak. I don't think either of those qualify as sandwiches. I'm going to say it's the school kid. It's going to be a pb&j. I mean what's better than a pb&j?
Stacey Simms 8:16
It is a PB and J and he says a lot of peanut butter. Not a lot of jelly. He prefers the complex carbs that come in. But I would think that the chicken fried steak is a complex something. Yeah.
Unknown Speaker 8:30
Chelcie Rice 8:32
Complex. There's so many complex things that go in it. Yep, yep, yep.
Stacey Simms 8:36
All right. Excellent. All right. Next question. There is an eternal flame at Banting house, the Canadian National historical site where Sir Frederick Banting woke up in the middle of the night with the idea that led to the discovery of insulin. The flame is meant to burn until there is a cure for diabetes. It was lit by the Queen Mother. In what year? And this is multiple choice. Wow. 1979 1989 or 1999? I don't think this was featured on the crown. So
Justin Masterson 9:07
it took it took him like 50 years to get this flame idea going.
Unknown Speaker 9:11
Oh yeah, well, at least Yeah.
Justin Masterson 9:15
I feel like it would be I feel like it would be in the 70s that feels like it was enough time to get the Queen Mother on board. I'm going to say 1979
Stacey Simms 9:23
incorrect. At 88 which I think is weird. I would have thought it was like 1959 but
Chelcie Rice 9:32
okay, was all the rage on MTV. So
Stacey Simms 9:36
I just finally figured out all the Elisabeth's in the royal family because of the crown the Queen Mother and the Queen girl anyway. Okay. All right. This is a an entertainment question for you. So brec bassinger is the young actress who stars in the CW hit show star girl actually got great reviews. It's been renewed for a second season. She lives with type one and her previous series was nickelodeons Bella and the Bulldogs and your daughter might have watched this. Maybe not. What sport did the Bulldogs play this whole show centered around this team? Was it football, baseball or soccer?
Justin Masterson 10:16
Sometimes my thinking sounds a lot like googling. Now, I'm gonna say it was a soccer team. It had to be the Bulldogs soccer game with
Stacey Simms 10:31
the quarterback. She was the quarterback.
Justin Masterson 10:36
Michelle, I'll send you something nice in the mail. I'm just sorry.
Stacey Simms 10:40
Well, there's a lot of game to go. There's a lot of Don't worry, don't worry. All right. Um, here's one. You know, I, I gave this answer away in the introduction. I don't know how well everybody was listening. I do this sometimes. Alright, here's the question. How old is the friends for life conference? I mean, what year of the conference? Is this year's 2020? lorincz.
Unknown Speaker 11:07
Don't say any. Okay.
Justin Masterson 11:10
1999. How about that?
Stacey Simms 11:15
Well, I'm gonna give it to you. Because it is the 21st year, but it started in 2000. Right. All right. But we'll give it to you. We'll give it to you. That was on the line that was on the line. Okay. And your last trivia question, or this is a show and tell. I hope I don't get in trouble for this. We love all our sponsors. Okay. In in 2018. I don't know how well you can see this. Yeah, in 2018. Can you see this? Okay. accucheck had a diabetes awareness campaign where they sent out these hands, promoted by country singer, Ben NRW. The idea was that you'd make the symbol, right. And you would upload a photo to your social media platform with this hashtag. And then their parent company would donate if they would donate a buck to diabetes, education and awareness. So here's the symbol. What was the hashtag? Was it give a book about diabetes, Buck off diabetes or go buck diabetes?
Justin Masterson 12:16
I can't believe any of those are true.
Unknown Speaker 12:19
I'm gonna read it again.
Stacey Simms 12:25
All right, we look at the answer in just a moment. What do you think it is? But first, Diabetes Connections is brought to you by Jeeva Kibo pen had almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's what tchibo Kupo pen comes in. Chibok is the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G book logo. g Vokes shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Chico glucagon.com slash risk. Now back to the game and Justin is trying to guess the buck hashtag
Justin Masterson 13:18
give a buck for diabetes buck off that diabetes or go buck
Stacey Simms 13:24
go buck diabetes.
Unknown Speaker 13:25
Oh my gosh.
Justin Masterson 13:29
I'm gonna say it was a buck off. Oh, hey, if those guys ever need some marketing consulting, tell them to give me a call. I think they might be on the wrong track from well,
Unknown Speaker 13:43
Stacey Simms 13:43
You do Chelsea?
Chelcie Rice 13:44
Yeah, I do remember that when I remember seeing is like are they really going with this one? That was
Stacey Simms 13:51
there. Remember that at all? Ben rule. It wasn't it was not too long ago. It was 2018. He was on the Today Show or one of the morning shows. And it was it was really cute. I think they had a bull riding thing. I mean, it was really cute. Except for the part that was alright, you did great.
Chelcie Rice 14:10
I gotta say, though, when you first pull that out. I thought that was a flying finger of fate from laughing in Asia, but yeah. Which finger to show first it getting easy. We don't want to give it away.
Stacey Simms 14:31
All right. So Justin, thank you. Standby. We're gonna move on to Lauren. Now for the other trivia questions. And we're starting with technology. Right this year Insulet changed the name of their hybrid closed loop system from Omni pot horizon to something else. Do you know what they changed it to?
Unknown Speaker 14:51
Unknown Speaker 14:54
no, I don't it's Oh, I'm so bad. No, no,
Stacey Simms 14:59
it's Omni. Hi.
Lauren Lanning 15:03
I can't remember no go.
Stacey Simms 15:06
Sorry, Caitlin. Anybody? No Omnipod five. I don't don't ask me what coober Omnipod five man,
Unknown Speaker 15:15
yet Anyone else? No,
Unknown Speaker 15:17
Justin Masterson 15:19
I know about the Omnipod five as a thing. It just never occurred to me you would change from horizon to five. It feels like a downgrade and
Stacey Simms 15:26
it's Omnipod five powered by horizon.
Unknown Speaker 15:29
Unknown Speaker 15:30
I don't know, either. Okay.
Stacey Simms 15:33
Okay, so this one is a little silly, but I enjoyed putting this one together. Major League ballplayer Adam Duvall was diagnosed in his early 20s. He's had a great season with the Atlanta Braves. But in the minors, he suited up with the August green jackets, which is just a great name. What is the mascot of the minor league baseball team? Augusta green jackets. I'll give you three choices because this really has nothing to do with diabetes, but I thought it was funny. Is it an anthropomorphic green jacket? Like you know the Masters little green jacket? Is it a fierce green insect? Or is it a little green golf caddy?
Lauren Lanning 16:17
I'm going with the answer. Look for thick,
Stacey Simms 16:21
green jacket. green jacket that looks like a person. Yeah, no, it's a green insect. It's the like a yellow jacket. jacket. It's got a little stinger. It's very cute. It's very cute. I had nothing to ask about Adam Duvall. Sorry. All right. Here's a here's another one. You might know this one. Eric church, just one Entertainer of the Year at the Country Music Awards. I was in attendance a couple of years ago when he gave $1 million to a local jdrf chapter at their Gala. What is his connection to diabetes? Is it Oh, go ahead. Oh, we are multiple is his connection. He's got a connection of type one. Is it his mother, his daughter or his wife?
Lauren Lanning 17:08
His mother, it is his mother
Unknown Speaker 17:10
act. Yeah. Excellent. Yes, his
Unknown Speaker 17:12
mom got one. Yay.
Stacey Simms 17:16
All right. Um, diabetes, mine ran an article earlier this year referencing how many potential cgms are in the works currently being studied or built or trademarked? How many CGM continuous glucose monitoring systems Did they say are potentially coming? 1929 or 39?
Lauren Lanning 17:41
I'm going to go with 29
Unknown Speaker 17:45
it's 39. Wow,
Unknown Speaker 17:48
isn't that crazy movie?
Unknown Speaker 17:49
Unknown Speaker 17:53
Chelcie Rice 17:56
we really need that many choices.
Stacey Simms 17:58
I don't think we're gonna get that many but let's all throw in.
Chelcie Rice 18:02
I mean, 39 What are we gonna be buying cgms at like, you know, Kroger or something.
Stacey Simms 18:07
People like poor Gary shiner. The You know, there's certified diabetes educator who tries every system he's gonna be covered.
Justin Masterson 18:12
So let's just work through all those you can only wear for the time before it really.
Stacey Simms 18:19
Lauren Lanning 18:21
I was on an airplane with him. And I think we were going to London for CWT conference. And i ne had on like, a, he had on a few different pumps testing. Yo, what happens? It was it was interesting. He's
Stacey Simms 18:37
amazing. All right, your last question. Great, Chelsea.
Chelcie Rice 18:41
No, that was just imagining and trying to go through ATF Yoda.
Unknown Speaker 18:45
Unknown Speaker 18:48
Want to explain.
Stacey Simms 18:52
Just I'm just beeping every two minutes. Don't mind me. Lauren, here is your show Intel. This is one of the Bibles of diabetes care, right? The Pink Panther book. This is the ninth edition from the year 2000. I think we're all very familiar with this. But the question is, when was the Pink Panther book first published? Was it 1970 1980 or 1990? Didn't didn't. Donna
Lauren Lanning 19:25
nine teen. Wait a minute. Wait a minute. It's Monica's Dr. Monica used to go seek Paperchase. Oh, and I used to work for the children's diabetes foundation who publishes the that book. I know this. Ah, it's 1970
Stacey Simms 19:50
it is it is 1970 who knew I didn't know you knew that. That's a
Lauren Lanning 19:55
thing. Do the math because Dana was died. Dana Davis was diagnosed And she's got this old and I have to do the math.
Stacey Simms 20:04
Yeah. And Barbara Davis center of course is where that so
Chelcie Rice 20:07
that free, right? Corning fiberglass marketing?
Lauren Lanning 20:13
No I think they paid oh yeah they paid for all the Pink Panther or no did they? Did they pay for it? There were there were very strict rules around how to use the Pink Panther. Well, and everything has been
Stacey Simms 20:30
okay in my, in my research, I found that the first two monograph printings were in the 60s created by a parent to their basement using an old army press and sent out for free. So kids gather round and learn how we used to use paper. Actual publication of the book was in 1970. But isn't that crazy? They did have to get they continue to renew the agreement to use the Pink Panther. I have asked many times, Lauren, maybe you can find out for us. What the heck does The Pink Panther have to do with anything? Why The Pink Panther and diabetes?
Unknown Speaker 21:06
right why Bart? Burke?
Unknown Speaker 21:09
Unknown Speaker 21:12
Stacey Simms 21:15
Yeah, and Okay, so you guys are actually tied at three points apiece Chelsea to take lead.
Unknown Speaker 21:20
Oh, my gosh. All right. You're
Stacey Simms 21:21
ready. Here we go.
Chelcie Rice 21:22
Sure. Let's go for it.
Stacey Simms 21:24
All right, the happy Bob app was released this year. It's been a very big hit. You can use it with your CGM readings, and it tells you encouraging messages. But they have since added a snarky Bob who tells you not so encouraging things, it kind of insults you a little bit. And they've added a female counterpart. What is the name of the female counterpart for happy Bob? Is it Karen, Mary Jane or Bobby?
Justin Masterson 21:48
Please be Karen please be caring.
Chelcie Rice 21:52
Oddly enough, I downloaded this app a few weeks ago. And in fact, it is Karen and I was very surprised that I was like, for real?
Stacey Simms 22:03
It is it's the it's like your annoying, annoying neighbor. I've reached out to them. They're gonna podcast like who comes up with this stuff? I
Justin Masterson 22:10
just love it. Karen would like to speak to your blood glucose manager, please.
Stacey Simms 22:14
Exactly. Chelsea, the in person at the in person friends for life conferences. And they send these out now with the virtual ones as well. They're always colored bracelets. Lauren, back me up here. Right green for people with type one orange for family members. When did they add the bracelets? Was it 2002 2008 or 2012?
Chelcie Rice 22:41
I'm just thinking back to when the whole bracelet thing first dropped because because you know what the lance armstrong thing?
Unknown Speaker 22:51
Oh, yeah. And
Chelcie Rice 22:55
I'm gonna just throw it out there and say 2002
Stacey Simms 22:59
Yes, it was 2002 had nothing to do with Lance Armstrong. Although those rubber bracelets were, you know, probably 90 Gosh, at this point. But the idea was the first couple of years. They you know, they were just trying to start things out. And then they were seeing the kids without their parents around eating. And it was like, well, who has type one and who doesn't have we've got to figure
Lauren Lanning 23:22
and when you see a kid sleeping in the hallway with glucagon or et you let them sleep because he's fired.
Chelcie Rice 23:31
They had to rule out the whole thing like just get into tranquilizer gun into tagging them like to do a wild kingdom.
Stacey Simms 23:40
Didn't my house Anyway, when they were preschool? It's much easier. Alright Chelsea I know you're a big fan of this show. The baby sitters club was a big hit on Netflix. Season Two is coming soon. The characters the character Stacy on the baby sitters club lives with type one of course very popular book series. So at the end of the episode, there were Stacy comes to terms with her diabetes. She asks her parents for a designer diabetes item. What is it? Was it I'll give you choices here. A Gucci fanny pack for pump supplies. A Gucci branded pump clip, or a Gucci cover for her CGM receiver
Chelcie Rice 24:25
shows so much
Stacey Simms 24:28
It's really good. Kids are way too old but we watched it anyway. And it was very good.
Chelcie Rice 24:34
We've been streaming Dexter for the past couple of days for
Stacey Simms 24:38
different different audiences. Yeah,
Justin Masterson 24:40
five is almost no overlap. Like
Stacey Simms 24:43
Mike we're this though. You could see where it could come in handy.
Chelcie Rice 24:47
I was gonna what was the first one you said
Stacey Simms 24:49
a Gucci fanny pack for pump supplies.
Chelcie Rice 24:52
That's what I was gonna go with a fanny pack.
Stacey Simms 24:55
And that is correct. It is a Gucci fanny pack. She does not get it. But she
Justin Masterson 25:01
does bedazzle the heck out of her pump though. And yeah, it's cool because for the rest of the series, you can see her pump like they leave it visible, which I think is really neat.
Stacey Simms 25:10
I think they did a very good job with it. I'm very happy. Yep. All right,
Justin Masterson 25:13
Stacy, did you cry when you saw that episode?
Stacey Simms 25:17
No, I cried. No, I'll tell you when I cried was the other episode when the dad like the dads falling in love and they don't know if they want him like I know cuz I have a boy with diabetes a different
Justin Masterson 25:30
kind of messed up. My daughter was cool as a cucumber and I was just fountains over here. It was a mess. I was
Chelcie Rice 25:37
like, I'm not missing anything.
Stacey Simms 25:43
All right, well, here's another one slightly different angle here. Chelsea. ominous beeping shut down the Forsyth County Courthouse. Not too far from me in North Carolina earlier this year, as law enforcement investigated a possible bomb threat. It turned out to be a diabetes device. What was it? Was it an omni pod discarded in the trash? a defense attorney with a Dexcom or a judge who let their t slim x two insulin pump run out of insulin.
Chelcie Rice 26:17
I was gonna say, what was it that was in the trashcan? You said it was an omni pod. I'm gonna go with that. I'm probably in the trashcan. Because it seems like you know, anybody's going crazy and shutting the place down ahead of in something. Because like, if it was somebody was beeping, they just like get up and run away or something.
Stacey Simms 26:33
Oh, yeah, you are correct. That was and that gave it away with the answers very good to see the deductive reasoning that interestingly, this was the second time in about three years that a North Carolina municipal building was shut down by an army i'd beeping.
Chelcie Rice 26:48
Previously, God walked through the courthouse.
Stacey Simms 26:55
That could happen. All right, our last tell our last show and tell me let me make sure there's nothing that's like, Okay. I'm not my microphone. This is our last show until a pop company had a line of toys like this, each of which was comfortable, sort of on the land or in the water. I think they also had a walrus, they had a penguin they had they would change the stuffed animal every year. The company is no longer in business. Was it? deltec Cosmo, the Animus or a Santee snap?
Chelcie Rice 27:35
vaguely remember this, but I'm thinking is second want to animate?
Stacey Simms 27:41
You are five for five matches? Yes. And Benny, the Bengal tiger. So of course I had to keep because my son's name is Benny.
Chelcie Rice 27:50
What am I Why am I remembering that? For some reason?
Stacey Simms 27:53
I don't know why you remember this thing? It's got to be seven years old. But I don't I mean, atomists went out of business officially in seventh 2017 or 2000.
Chelcie Rice 28:01
I think when we I think when I was at, for instance, that you that was like the last time anybody who's seen animals that I remember after that they just pretty much is like, you know, walked off into the sunset.
Justin Masterson 28:16
And we I remember animus is they went out of business the day after we signed up for an animist pump. Oh, so for my daughter, so she was finally ready to try a pump with tubes on it. And we were like, yeah, we signed up for an animist pump. Yep. And we and we took it home from the clinic and everything and we had just trained on it and they're like animals go out of business. We never took it out of the box.
Stacey Simms 28:37
Wow, I'm so mad at them. We love them so much. And I actually it's a long story, but they're one of the reasons why I was able to come into the diabetes community the way that I did they like my blog and I want to speaking and writing for them. And they had this they had great studies on their hypo hyper minimiser. They were one of the first you know, hybrid closed loops that were coming and then Johnson and Johnson pulled the plug. All right, we are in excellent shape. We have Justin I'm actually keeping score which I usually forget to do. Justin Lauren are tied. Chelsea is in the lead. And now it is time to move on to the bluff the listener portion of our show, and we have a real live contestant with us. Tripp stoner is joining us and Tripp you're on the road. Thanks for thanks for jumping in.
Unknown Speaker 29:22
No worries. I'm near you.
Stacey Simms 29:27
I heard so you're from Atlanta, but you're passing through North Carolina. Um, let me ask you, if you don't mind, tell us a little bit about who you are your connection to diabetes and what's up with your friends for life usually,
Unknown Speaker 29:38
um, I am a type one myself. I do a little bit of blogging here and there. I'm not as passionate as y'all are. But I've been with friends for life now for going on. I think four years. I'm kind of behind the scenes most people don't even know I'm on the staff which is a good thing. I'm just there to help whoever needs help. That's pretty much it.
Stacey Simms 30:03
Awesome. All right bluff the listener section, you have to guess which of our panelists is telling the real story of something that happened in the diabetes community.
Right back to the game in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that has changed our diabetes management as much as the 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, parent, spouse, whatever, 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 app required, learn more, go to Diabetes, Connections comm and click on the Dexcom logo. Now back to the game and we are moving into bluff the listener.
All right, so we're gonna take turns reading here. Our subject this year is diabetes mascots. And they are of course as we've already seen, those adorable furry friends have helped make type one a little less scary for pediatric patients. But honestly they can be a little bit weird. So Chelsea, why don't you go ahead and go first I'm going to give you the floor here let me let me do this. There we go. All right trip can hear us. Chelsea you're gonna read your story. And then after we hear from everybody triple let us know which is the real thing. So go for it. Chelsea. Cool.
Chelcie Rice 31:39
Alrighty, Rufus is the adorable teddy bear that jdrf gives out to newly diagnosed families. But many don't know that the bear with diabetes is named after American Canadian singer Rufus Wainwright. As a child growing up in New York, Wainwright was hospitalized with acute appendicitis. Turns out his best friend Brian was in the same hospital receiving a type 1 diabetes diagnosis. The Wainwright recovered quickly, but Brian had to stay for two weeks. Future singer insisted on visiting every day until his friend came home. Later that year, Brian's mother worked with jdrf to create a toy to help kids learn to do shots through play. By then Wainwright's family had moved to Monterey. Also, she named the bear after him to give the boat give the boys a nice way to remember each other.
Stacey Simms 32:30
Very nice. Okay, so that is our first story trip as you are listening. Keep that in mind. All right, Chelsea, I'm going to switch you out with Justin. You're up Justin, what's your mascot story?
Justin Masterson 32:43
This is a nice follow up story. So after the success of Rufus from jdrf, and Medtronic, Lenny the lion, other diabetes companies decided they needed a mascot to but what animal would appeal to kids and make sense for Omni pod? In the mid 2010, the makers of that system decided to ask their customers Insulet asked kids to come up with not just their mascots name but its species. What kind of animal goes with a tubeless pod type insulin pump. They got some creative submissions such as a dolphin and a puppy named Potter. Get it? PAWD er Potter, Omni pod chose a turtle because they say the shell resembles a pod then because turtles are at home on land and in water just like their system. The trademark for turtle Potter. That's the actual trademark was issued in 2016. And Toby was a central part of omnipods teaching app launch that year. Why is he named Toby? That's only for the turtles to know.
Stacey Simms 33:48
Mm hmm. Justin. Okay. And our third story for a diabetes mascot comes from Lauren take it away.
Lauren Lanning 33:59
Okay, Tandem is the current sponsor of beyond type one snail mail program, which of course has a cute little snail mascot. But the makers of the T slim x two pump have been working on a separate symbol of their own instead of a fluffy friend. They've decided on a bicycle built for two. That's one meaning for the word Tandem, of course, a bicycle with seats and pedals for two riders, one behind the other. Before COVID hit, they were planning to launch this as a stationary attraction at diabetes conferences. The idea was to have fun contests like how far can you and your dad pedal in five minutes? What happens to blood sugars when you hop on the stationary bike? They were also going to have children at the conferences, decorate and even put features like eyes and smiley faces on the bikes to see if it could work as an actual mascot. All right, so
Stacey Simms 34:59
trip. The question is, is the real story? Rufus Wainwright inspiring Rufus, kids picking the turtle for Toby the turtle or tandems bike extravaganza at conferences if it wasn't for COVID
Unknown Speaker 35:19
um, I believe it's going to be Rufus. If I remember the story right. She eventually set up quite a few women's sewing those bears together to hand out to other children at their local Children's Hospital.
Stacey Simms 35:35
Well, Chelsea, was that the real story?
Chelcie Rice 35:41
Let me check your email.
Unknown Speaker 35:46
Stacey Simms 35:50
The there's just enough truth in that one. Yes. There was a wonderful mom the kids name was Brian. So I apologize for sticking that in there. But Rufus Wainwright has nothing to do with Rufus the bear Justin had the real story of Toby the the turtle although I've got to say I wish and Tandem for a licensing fee you can have that idea from me for and I wish your idea was your story there was true I love that one.
Justin Masterson 36:18
It does remind me of the the contest that they had to name the the boat and they named it boaty mcboatface. So I think they got a lot better with Toby the turtle they
Stacey Simms 36:33
will chosen for that for fooling everybody.
Chelcie Rice 36:37
They change it to Rufus our freight train Jones.
Unknown Speaker 36:40
Oh, like that
Chelcie Rice 36:41
real wrestling fan out there. You know? Yeah. Old School wrestling, you
Stacey Simms 36:46
know. will trip. Thank you so much. That was a lot of work. I know on your part to join us. But we appreciate you dialing in and making it work. So thank you so much for playing.
Unknown Speaker 36:59
Thank you. Y'all have a good day. It's great to see all of y'all.
Unknown Speaker 37:03
You too safe drive and travel.
Unknown Speaker 37:05
Stacey Simms 37:08
Greet job, everybody. That was funny. All
Justin Masterson 37:12
right. I love these stories. They were really well written.
Stacey Simms 37:15
Good art. Thank you. That's my favorite part of doing this. The hardest part is just coming up with the object after that. It's easy. Yeah. But man, thank you.
Lauren Lanning 37:24
All right. Thank you, OSU. We'll be showing you some royalties on that. How could you not
Stacey Simms 37:28
do that man at the conference? That's
Justin Masterson 37:31
such a great idea.
Stacey Simms 37:33
I'm sure. I'm sure their marketing team has thought of it and dismissed it.
Justin Masterson 37:38
Somehow buck off diabetes got through.
Unknown Speaker 37:41
Chelcie Rice 37:43
Really, really bad ones.
Stacey Simms 37:53
are moments people have got a deadline people? Oh, all right. So finally, we are moving on to our limericks now I will read a Limerick to each of you. If you complete it correctly, you will get an additional point. So the topic here is people with diabetes on reality television. So the the answer and I shouldn't give you too much information here. But I think I'm a terrible Limerick writer. So I will tell you that the answer I'm looking for is the name of the show. All right, so Lauren, we're gonna start with you. I apologize in advance these are really bad. I you know, when I learned that on Wait, wait, don't tell me they have like a guy who works on this all week long. He's I don't know if you're not but he's Yeah, but that's what he does. So forgive me. There we go. All right. Remember these reality shows where people with type one appeared. More in this show could be called the CO ket. And a crowd of contestants. Well met Michael among the poor schmoes who didn't get that rose desert he said no thanks on the bachelorette. Yes on the bachelorette. I know the rose gave it away. But Michael apparently was a contestant with type 1 diabetes on a season of The Bachelor. I think it was 2013 I don't watch that one. All right, Lauren, point for you. Excellent. Chelsea, this one's for you. This show is all over the place. With contestants who rarely embrace. Matt came in first, Leo. Well, he's not worst. It's a long road for
Unknown Speaker 39:37
The Amazing Race. The Amazing Race.
Stacey Simms 39:39
Yes. Dr. NET strand, one that a few seasons back and Leo is currently a contestant. Hopefully by the time this airs, he will still be on the show. And not out of it yet. So and Leo has a really we talked him for the podcast he lives with type one word, exactly type one but he head was born with hyper hyper insulin ism and had to have most of his pancreas removed. And then he lived pretty normally until he was 19 when he developed diabetes, but we all spotted his Dexcom on episode one. And I tracked him down. Got him on the show. All right, Justin, this is for you. Ready? This competition for fame? features cyclones and Rams and some flames. Chris trained round the clock. Got a hug from the rock. We spotted his decks on
Unknown Speaker 40:35
okay, I can do this.
Stacey Simms 40:37
This is probably the hardest one sorry,
Justin Masterson 40:39
the rocks on it. There are flames involved. Uh, the Titan games?
Stacey Simms 40:45
The Titan games? Yeah, the right route. And yes, Chris Rutan competed. Yeah, Season One of the Titans.
Justin Masterson 40:51
I remember that episode. That was like the one that my daughter called me downstairs to show
Stacey Simms 40:55
me and got a big hug from the rock. Yeah, that was very nice. All right. So we have totaled up the points, which which don't matter for pride. Chelsea is the winner. But everybody gets a prize. Everybody gets a prize. It's just
Justin Masterson 41:10
for Michelle, did I come in dead last? And does Michelle somehow get punished for
Unknown Speaker 41:14
no actually tie
Stacey Simms 41:18
it all around. So in summary,
Unknown Speaker 41:23
Stacey Simms 41:25
Caitlyn, coming in for a tie for second with Michelle. And fee and Chelsea are the winners. So congratulate all around but it's really well done. Really, aren't we all winners though? And it comes right down to it.
Justin Masterson 41:44
I'd like to think so. But some of us are technically and more accurately winners. And that's Chelsea.
Stacey Simms 41:48
Well, some of us will find out for winners. If we find out if the show. In the couple of minutes that we have left. Let me just go around and say a thank you. And maybe just give you guys a little bit of a last word. Lauren, you have been amazing keeping the muffles going and everything had friends for life. How's it been for you this year? Are you enjoying it? Is it just more work for you?
Lauren Lanning 42:11
I know i'd love it. I'd love the connection. I didn't think that a online would still have the same feel. But it's great connecting with my muffles every other week and hope everyone can join us.
Stacey Simms 42:26
Excellent. And Justin, um, you know, I can't imagine it's easy doing this quarantine thing you know, as you were with your family and your daughter was one I know it's not easy for any of us. Anything I see a guitar in the background, what are you doing to keep busy?
Justin Masterson 42:39
Yeah, I'm doing a lot of this. A lot of playing music. And I've been one of those folks who has dug into you know, a little bit of cooking and a little bit of fixing the house and I'm not making soap like Chelsea, but I'm doing my very best with what I have. And I'll put in a plug for the dads group. We love being able to run the dads group at friends for life. And if you're not already a part of it, and you're a dad, we'd love to have you I have had some of the most moving experiences of my diabetes journey at the at the men's groups and when amazing questions and amazing learning and then just a lot of camaraderie which I really appreciate.
Stacey Simms 43:19
It is such a gift for all parents to be involved in things like that. It really is a gift for your child's if you're dead thinking about it. You've been reluctant because you know, are your manly man, guys don't do that. Please do that. It's wonderful. Justin, thanks for bringing that up.
Unknown Speaker 43:31
Stacey Simms 43:32
Chelsea, where can we buy your soap? I'm not kidding.
Chelcie Rice 43:37
No. I mean, you can follow me on like, what Instagram type one comedian type tip number one comedian, Instagram because I'm always, you know, posting pictures on there because of just for the heck of it. I'm not really you know, trying to sell but I'm right, because I don't have like a business license or anything. And you got to have insurance when you're selling something that you're gonna rub on your body and then cause somebody like to lose, you know, you know, something, they made some organ that they may need something like that. So I'm willing to like you just pay me to ship and I'll send you some soap. It's no big, big whoop.
Stacey Simms 44:13
And I have to ask you, is there anything that you've made? That's been more interesting? I've seen a couple of things that you've called disasters that I still think are beautiful.
Chelcie Rice 44:21
Yeah, I mean, there was one that one of the things that happens when you you mix the lye water into the oil sometimes if you add some additives like fragrances, they react differently. And one that I put in there just like turned it didn't look like cottage cheese. And I thought it was like oh well and so but I put it into the mold anyway and I colored it with a little orange and little yellow. And when I when I when it's solidified it looked like Colby cheese. And so I mean like and the funny thing is they turned out to be really good soap is a really good hand soap. I don't know what to put in it. Oh What you know percentages, but it comes out to this really nice handsoap that doesn't leave your hands all stripped. And I was like, Okay, great. Now I don't know how to do it again. So, memories.
Stacey Simms 45:14
That's a great trick, but I can only do it once. Yeah. All right. Wonderful. Well, as usual, we got off topic of diabetes. But thank you all so much for joining me on this for another edition of Wait, wait, don't poke me. And maybe we'll do it again sometime. But thank you all so much for being here. I hope you enjoyed it and had a couple of laughs
Unknown Speaker 45:33
Lauren Lanning 45:34
It was fun. Thank you.
Unknown Speaker 45:41
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 45:47
I love doing the game show episodes, there's so much fun to put together. I would do it every week, if I had the time. And if I could come up with that much diabetes trivia. Anyway, you can listen to our previous weight weights at Diabetes connections.com there is a very robust search on the website with more than 340 episodes. Now, we really want to make it easy for you to find what you want. So you could just search weight weight or game show this past summer at friends for life. I did a Hollywood Squares because zoom just looked like that to me. So I did Hollywood Squares for the game show but you can find all of that and much more over at Diabetes connections.com Thank you to my editor john Buchanan. So for audio editing solutions, and thank you so much for listening. I'm Stacey Simms. I will see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
The new big-budget disaster movie Greenland comes out on streaming this week. It starts Gerard Butler as the central character, trying to save his family including his son who lives with type 1. Award winning screenwriter Chris Sparling had never put diabetes into one of his movies, but he knows all about T1D. His wife is Kerri Sparling, writer of the very popular, and now archived, blog SixUntilMe.
Stacey & Chris talk about writing something personal into a movie and then handing over control to a different director and producer, as well as what it's like to try to make movies during COVID restrictions.
In innovations –JDRF begins at-home early T1D detection.
More on the new JDRF T1Detect program
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 (rough transcript, computer only - check back for proofed version)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop, created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, there's a new movie all about a big global disaster and it features a main character with type one. award winning screenwriter Chris Sparling had never put diabetes into one of his movies. And he was a bit concerned about how it would all turn out.
Chris Sparling 0:41
I became so in a way overprotective of getting it right. And it being portrayed right because the last thing I wanted to do was to finally incorporate diabetes into a movie of mine and for it to end up being portrayed wrong.
Stacey Simms 0:55
Many of you already know Chris, sort of his wife Kerri Sparling wrote the very popular blog six until me for almost 15 years. We talk about diabetes in the movie and at home and about the entertainment business during this time of COVID
in innovations JDRF begins at home early T1D detection.
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. I am your host Stacey Simms and we aim to educate and inspire about diabetes by sharing stories of connection. Something different This week, we're going to talk about Greenland. This is a movie it's releasing in the US on video on demand it stars Gerard Butler and Marina Bakkerin who you probably know from the Deadpool movies. I put the trailer in the Facebook group and Diabetes Connections of the group. But the basic plot is that these are estranged parents, maybe they'll get back together, but they are working on their marriage just as a world ending cosmic disaster happens. And wouldn't you know it, their son has type one diabetes, so diabetes, type one insulin, this all becomes a plot point.
Now we've talked about this a lot before so many films and TV shows have gotten diabetes exactly wrong. But Greenland has a big advantage. And that is as you heard in that opening tease, and that screenwriter Chris Sparling, whose wife lives with type one, we will get to Chris in just a moment.
But first Diabetes Connections is brought to you by one drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but the arguing with insurance about over what they say you need and what you really need. Make it easy with one drop. They offer personalized test strip plans plus you get a Bluetooth a glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door no prescription or co pays required. One less thing to worry about not that surprising when you learn that the founder of one drop lips with type one, they get it one drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the one drop logo.
My guest this week is an award-winning screenwriter. He is someone that I've never met, but I feel like I kind of know because for many years I and many of you read about him in Kerry Sparling’s blog SixUntilMe. Kerri spent more than 14 years writing about her life with type 1 diabetes which included meeting and marrying Chris, who has been featured in blog posts about kids and family and everything you would expect. Kerri has stepped back from the blog to pursue other projects in her own writing. And Chris has a big movie coming out this week as this episode airs, Greenland, which debuts on American streaming this week.
Chris, thank you so much for joining me. Welcome to the show.
Chris Sparling 3:53
Thank you. Thank you for having me.
Stacey Simms 3:55
It's great to have you. I feel it. As I said, I feel like I kind of know you. So I appreciate you kind of taking the leap and coming on not a movie or writing podcast, but a diabetes podcast. So this should be really fun. What made you decide I mean, you've been writing movies for an awfully long time. What made you decide to put diabetes?
Chris Sparling 4:14
You know, it's something I've been wanting to do for a while this movie presented a pretty unique opportunity for me to do it for a couple of reasons. One, the movie is the first of what's called Greenland. And it's about an incoming asteroid that's going to hit Earth or comet, it's going to hit Earth. It's this existential threat that everyone on earth faces. So kind of by nature of that alone, there's a ticking clock built into the movie, right? It's just when this thing's going to hit you're trying to get to the bunkers in Greenland. I tried to get there safely and survive.
And so on the macro level there is that that large ticking clock at play, but the movie itself is different than say, deep impact or Armageddon in that it operates more on a personal level than those two movies do. You know it's not a movie checking in with what the government's doing to try to up the asteroid or anything like that, it's really more like the movie, the impossible if anyone listening ever saw that it's a great movie. And it's all to do with seeing it through this one particular family's lens, how they're going to survive this, this Cataclysm. So built into that I wanted to have a more personal, it's a more personal story. And I'd like the idea of having a more personal ticking clock as well.
And so the son in the movie has type one. And now that's not to say the only reason why I gave him type one is to say, oh, that'd be a cool narrative device is to add yet another ticking clock. But it also quite honestly, it just, as I said, at the beginning of this long winded answer is that it gave me You know, I've been wanting to do it for a while, you know, Kerri and I have been together for a very long time. So I've seen type one up close and personal for a very long time. And, you know, I think it's kind of, it's somewhat misunderstood, if not even known condition by a lot of people. So it was, you know, I'm kind of hesitant to use the word educate, because I'm not really trying to do that, but maybe just shine a light on it a little bit. And, you know, this was a, an opportunity to do that on a, I guess, a large screen, or one of your house.
Stacey Simms 6:08
But I'm really curious, as you said, This isn't a movie where you're going to take time to actually do a formal education about type one, just as I wouldn't expect a formal education about a comment hitting the earth, and you know, what would happen, but you do have to explain these things. And I'm curious, you know, how do you work that in, you know, I assume we'll see things like injections or a pump or something like that. But was it difficult to kind of write it into the fabric of the story without, you know, Hey, everybody, we're gonna talk about diabetes.
Chris Sparling 6:34
Now, it was, to a certain extent, because, you know, as you will know, it's diabetes, you know, it's sometimes can fly a bit under the radar. You know, I recently, it was kind of bizarre to do it. But it's fun, I did it, I did an interview with Kerri. And so we were talking like you and I are talking now. And as I told her, then, and I don't always know when she's low, I don't always know when she's high, you know, things are beeping and everything else. And sometimes she takes on a certain characteristics, when that's going on. And I do know, or if I see you're sweeping a bunch of juice or whatever, but like, but sometimes I just don't know. And so to kind of to represent that on screen is difficult, because if you try to go too far in one direction, or the other, it may start to feel very false and forced, and almost cartoonish. And I say 100%, didn't want to do that. But if you go too subtle with it, which diabetes can sometimes be a rather subtle condition, you know, at times, and, you know, if you do that, then it just, it doesn't register for the audience at all.
So to kind of dramatize that, what I did was I had the boy, the young boy in the in the movie, let's take one, I gave him a pump. And, you know, to kind of develop a shorthand with the audience, right out of the gate, there's a scene early on in the movie, where Gerard Butler who started in the movie, he's seeing that basically, he's been away, he, his wife had marital problems, and he's kind of they're trying to work it out, he and his wife now and he's coming back, he hasn't seen his son in a little while. And you see, there's a nice tender scene between him and his son, where he notices the pump, the insulin pump, and he says, you know, you know, basically, there's something to the effect of I do like that better than the shots. And you know, just kind of getting it across to the audience, someone who may not be as familiar with it as you are.
Or I might be what's like, oh, okay, I get, you know, I can understand that you're certain things, I have a certain amount of knowledge about diabetes. So yeah, it's not, it's small things like that along the way, I've no doubt there will still be things that some people watching, it won't fully kind of hook on to, and they won't fully get. But at the same time, I think there might be elements of it that people watching might be like, Oh, I had no idea. I had no idea that having diabetes would require something like that. Or even to say, the immediacy and the importance of insulin, it kind of where I spoke earlier about this massive macro level existential threat that they're facing. But they still have to get to these bunkers in Greenland, if they're going to survive. And there becomes a situation where this boy get he needs his insulin, because he gets separated from it. And it's like, well, yeah, the large scale goal here remains, but if we don't get you there safely, and again, I mean, just maybe telling maybe to a certain degree, informing the audience who might not know that insulin is not just something like, again, you take it whenever you don't know, I don't know what some people might think, like, you just take it once in a while you take it as you feel like it or I don't know, whatever the misconception might be,
Stacey Simms 9:09
that we eat a cupcake, you need your insulin, right? (laughs)
Chris Sparling 9:12
Yeah, yeah. I think if nothing else, maybe it'll open, not open people's eyes. That's actually wrong, especially maybe just kind of illuminate the topic a bit for some people.
Stacey Simms 9:19
You know, again, I said at the beginning, I'll probably say a few times. I know very little about the industry, the movie industry and and what it takes to write a movie and produce and get, but I would imagine that and you've done projects before, where you've been involved in every step, right, you've written and then you've produced it, or you've been more involved. But with this, you you wrote it as my understanding, and what happens after you kind of hand off your baby because the director can change things, right. The actors have to change things. I guess I'll ask it both ways. First about the diabetes. Did they get it right the way you had hoped? And then we can talk about the movie?
Chris Sparling 9:53
Yeah, well, I mean, yeah, I mean, first, even before diabetes, yes, that always happens. I mean, I've directed movies, I produce movies, all of which have been ones that I've written. So, you know, in those instances, I have obviously quite a bit of control over what the final movies gonna look like in this instance, having just written it. In other movies I've only written, you know, there's always an understanding that when you hand it off, essentially, you know, your depends on the project, quite honestly. I mean, sometimes just as the screenwriter, I am still very much involved with the production because the director or the producer probably see the value of having the person conceived it but but with this, I was involved but not see, like, on a day to day level, that's for sure. Look for the diabetes of it all. You know, I was happy with it.
And I was, there were a couple days when I was on set. And, you know, there was I just happened to be there. One of the days they're shooting a scene in in the grocery store and use the sons, they're shopping with his dad, and he's like, Hey, can I get some juice in the dad's like, yeah, sure, go get some. And I remember talking to the directors like Rick, listen, he's like, I was like, you know, my wife generally doesn't drink juice for fun. I'm not I mean, again, I know. She perfectly well, I should be no problem. She could if she wanted to just you know, but I was just I became so in a way over protective of getting it right. And it being portrayed, right, because the last thing I wanted to do was to finally incorporate diabetes into a move your mind and for it to end up being portrayed wrong. But in talking with Rick, he was like, No, no, it's cool. You know, I guess he was, meanwhile, he had his friend on speed dial who was the parent of a child of type one. He's like, No, no, I talked to them. I've consulted with them over and over again. And they said they get no, they let their child have juice if they want it and everything else I was like, and like, on an intellectual level, it made perfect sense to me.
But I was I mean, I was kind of like waiting that we hold on a second rate bumps, you know, so to fully answer the question, I think the director, the producer was I think they did a really good job. I think people watching the movie and will it be 100%? Right? I don't know. I mean, people might see it and say, Hey, I don't know if I agree with that. Or not. But everyone's situation in their approach is different. But I could say if you kind of widen the aperture a bit and take a look at it, I think people are gonna I think it does it handles it accurately. For the most part.
Stacey Simms 12:02
I would have been like Gatorade zero, and then he can get a juice box for later.
Chris Sparling 12:08
Yeah, I mean, that's I'm saying like, everyone's situation is different. Right?
Stacey Simms 12:11
So let's talk about movies for a little bit. Was this your dream job? Was this something you always wanted to do?
Right back to Chris in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, I've talked about this before, but it's still striking to me when Benny was a little, you know, you give your kid a bath almost every single day or he goes swimming all summer long. And I always noticed his fingertips, you know, they were poked so much, that they were full of these little holes up and they just looked really awful. Especially when they got wet. It was almost 16 I'm not looking at his hands very much anymore. But man, when we go to the endocrinologist and Dr. V looks at his fingertips, they are normal. We've been using the Dexcom for so long. Now it was seven years. And with every new iteration, we have done fewer and fewer finger sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing the 10 finger six a day we used to do chasing my toddler around, it makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G six do not match your symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.
Now back to Chris and he's talking about whether this is still his dream job. Does he still love working in the movies?
Chris Sparling 13:38
Yeah, 100% I mean, I started like eons ago, I started as an actor. And I lived in Los Angeles for several years doing that. And while I liked that, and sure, it would have been great to have ultimately done that it just wasn't really it's a really, really tough racket, trying to be doing the struggling actor thing. You know, it's fine when you're really young doing it. But at a certain point, you just feel like, wow, I have like no agency, I've almost no control over my future. You know, it's just really, really tough. So I just kind of felt I needed a little more control over my career. And so yeah, so to be involved in this industry in any capacity was was always my goal.
Stacey Simms 14:16
How does it work these days? I mean, people will say, well, you can write from anywhere. But I've got to imagine that the whole industry, if not moving slower, shut down. I mean, 2020 it's been a mess for everybody. But from a filmmaking standpoint, how did this even get done? When was I guess we'll talk about Greenland, but in general, like, how are things getting made right now?
Chris Sparling 14:36
I mean, yeah, Greenland was all written, shot well before the pandemic, but at the same time post production, it got shut down for a while in post production. So it didn't get completed, completed until in the midst of the pandemic, you know, and then as far as the release of it, yeah, I mean, it's supposed to be in theaters two or three different times, then take a push back and push back. But separate from that, you know, as 2020 is going on. I've actually had two other movies shoot during the pandemic, I just had one that wrapped two days ago in Albuquerque. And so for me personally, it's been a, you know, again, I mentioned earlier, but I can't complain people have like real, you know, things there, especially during 2020 people have had really awful things that they've kind of faced, I'm not certainly gonna, I'm not going to complain about having a movie pushback or not being able to visit set because of COVID. But yeah, I mean, it's been a bit of a bummer. That's, you know, I'm still human, like, it was a bit of a bummer to, to have two movies that, you know, I wrote and produced, and I was basically producing from, you know, one was an Ontario as a movie called Lakewood that I did with Naomi Watts. And then a movie that I just did born in Albuquerque that wrapped two days ago. And it's like, I was watching real feed, like real time feeds from the camera, in my house, in my home office. And my situation of you know, being very protective in particular carry, you know, having type one, and so we are, we're very, very locked down here and the COVID of it all. And so me going to set me being on set just wasn't really an option for me. So
Stacey Simms 15:58
that's interesting, though, I had no idea that you know, things, I guess a few we've seen TV shows, we've seen things being filmed a little bit here and there. But it didn't occur to me that full scale production or partial scale production, because you were in your house looking at things was going on. I don't even know what to ask, are they putting their masks on until they like jump in front of the camera? Is it locked down? Is it just a free for all? Because?
Chris Sparling 16:18
No, no, definitely not? No, it's it is I mean, I really wish, you know, for other industries that are still out there, and people are working, you know, maybe it's just not feasible, but the film industry to its credit, and television industry, they really have some great protocols in place. I mean, it's their zones that I like, I'm not going to get into like all the like, they were really, really strict measures. Because again, I mean, there are a lot of unions involved to this screen actors, guild writers, Guild, Directors Guild Producers Guild, so they're very protective of their membership for, you know, in the first place. And there's regular testing and everything else. And again, that's a luxury not I mean, not a lot of people have that. And then it depends on the size of the production. I mean, if you're talking about a big, let's say, Marvel movie, I mean, you could, in that instance, they're going to probably create a massive bubble, wherever and like they rent out an entire hotel, or like they do a Mission Impossible, where they literally rented out an entire cruise ship. And just everyone lived on the cruise ship off the coast of Norway while they were shooting there. So like, I mean, that that wasn't
Unknown Speaker 17:16
like that. But that makes sense. If you can afford Yeah, but
Chris Sparling 17:18
if you can afford it, yeah, I mean, it's budget plays a big role. But it's really, really difficult as it should be. Because it's there are people at risk. And yeah, the actors in particular, because, you know, when you're rolling the cameras, you can't have masks on anymore. So you have to be really, really strict and in how you go about your productions.
Stacey Simms 17:36
What do you think is going to happen with entertainment? In the next few years, I was having this conversation with a friend in terms of are we going to see COVID and people in masks and kind of that real life reflection in the next couple of years in sitcoms, where people are trying to reflect back to us what we've been through this year? Or do you think we just need a couple of years away from it? Before we can start seeing?
Chris Sparling 17:57
It's interesting, I've had that exact conversation with a lot of people, where is it going to be in stories? Is it going to be that you pretend COVID just never happened? Or do you incorporate it, even if it's not just like a major part of your story, it's just an element of life that everyone is familiar with it. So it's not if you just mentioned all they get someone gets sick during COVID, a couple years ago, you just off handed say it and there's no explanation because everyone in the world is going to know what that is. So it's either, you know, in I'm of the mind where, when we're out of this, I want to be out like I don't I don't want to look back on this and try to make it I certainly don't want to make it part of other people or right now. It's you see people trying to make pandemic movies and everything else. And I'm like, I want no part of that. I want no part of that at all. And that's fine. I'm not judging them for maybe wanting to I'm just saying for myself. Yeah, I'm hopefully looking to the future here and want to get past this and move on.
Stacey Simms 18:51
I'm with you. I think we'll know for sure if like a rom com next Christmas makes money and they're able to do like a meet cute with COVID. emasculate that takes off, then we'll know but I don't think it's going to.
Chris Sparling 19:03
Yeah, and I know like I my wife watches this is awesome. You know, I I saw a couple times where they're wearing masks on the show sort of there now, and that's fine. I mean, I'm not judging it. I'm just saying for myself,
Stacey Simms 19:15
I would but I'm with you. I want to be entertained right now. I'm not maybe as we get past it, we can reflect for but I could be meant, you know, it'll be interesting to see because there are different opinions about it for sure. Looking back to Greenland, I wanted to ask you, why did you give diabetes to the kid in the movie, and not the wife character? Was there? Was there a thought process there?
Chris Sparling 19:38
It's tough to say I mean, don't really recall. I mean, probably wrote this movie by now maybe four years ago, years ago. I don't know. If I decided at this moment. I'm going to make a movie and give a character in a family that type of diabetes would I make? I don't know. I mean, maybe, maybe again, just kind of speaking to this. Again, I'm hesitancy an opportunity to make some seemed like I was on a crusade and it wasn't I'm not on it at all. But like, I think there are a lot of people I'm gonna be frank, I don't think a lot of people know that kids can get diabetes. I just don't think that they, I think a lot of people, I think when they just hear the term diabetes, I think they mean type, they just assume it means type two, they don't even think that there is a type one or type two, they just think there was diabetes, and to maybe see a child, the 78 year old child with diabetes, maybe that kind of will at least, I don't know, in a waste stop some, someone long enough to say, Well, wait a minute, I never knew that. Little kids can have diabetes. For example,
Stacey Simms 20:35
I mentioned in the intro this interview that, you know, I kind of knew of you knew you a little bit from Kerry's blog, my son said he was 14 years ago. So she'd been writing the blog for a while when he was diagnosed and was one of the first things I found and like many people, because very, very popular blog, you know, I read everything she wrote, I feel like I knew so much about Kerri. And it was a huge help to me, even though I have a son. And it was something my spouse who has type one, what was that like for you? Was that like a different world kind of like, okay, Kerry's writing her blog, but you were mentioned it we knew about your family we do about things that are going on? I'm curious what your perspective on six and told me is,
Chris Sparling 21:11
I mean, I've always tried to be as supportive as I could with everything that she's doing in the community and elsewhere and on the blog. Yeah, that was no different. I think it speaks more to just how the internet itself has changed. Overall, we're, I mean, she started blogging when people didn't even, like, I want to say she was one of maybe two or three bloggers who were blogging about diabetes at the time. And this was, you know, that's at a time when the internet, like blogs were pretty new, and people weren't generally sharing, they weren't comfortable sharing personal information online, so much. And nowadays, that's all the internet is. And so like, so it's kind of a different space. And it was, it was a much more. You know, it wasn't it wasn't the juggernaut it is now I don't mean her blog, I mean, just like any kind of blog, or social media account, or anything else like that. So her writing personal details about, say, our relationship, and then our, you know, our marriage, and then our then our daughter at first, it just seemed we were okay with it for a while. And then just again, speaking for us, this is no comment on anyone else who might be doing this now, currently, but it's just for us, we just kind of decided that, you know, just wanted to be a little more closed off with the personal stuff in that way. So that's why if you go back, I'm sure in her blog, maybe when you started. I mean, there was a I remember a lot of stuff we she would talk about the stuff she and I were doing is kind of like a young couple going into New York City and hanging out. And, you know, so because it was kind of it was just kind of fun, and had almost like, you know, almost had like an early Facebook field where you just felt like, Hey, I'm writing this to my friends and family. Right? You know, as opposed to, you know, you write this stuff, and then all of a sudden, it's just, it's fodder for anyone to comment on or anything, I don't know. And it just became, I don't know, if it's a conscious decision or not, it just became more of like a Yeah, just to kind of pull back a little bit in that way on her on her blog and stuff.
Stacey Simms 22:57
Yeah, for me, it was almost like a teachable thing in terms of not just diabetes and learning about what an adult perspective was, but really did help me a lot gain perspective. And even when my son was two, it was also a really good kind of template almost in terms of sharing, because it did educate a lot of us along the way. Because that was before Facebook and social media. Really, I know, you're probably not gonna think about Facebook in college, and that was it. But I mean, for you know, in 2006 when I think she started as a five there was no social media really so right. It was a really good lesson in protecting your privacy, especially as it went on. But you know, it's it's a different world. People can't share enough some people. So isn't Greenland has been released, I believe in Europe and some other parts of the world because that's, I've seen it in some of the parenting Facebook groups. People have been chit chatting over it. Yeah. I asked if anybody had any questions for you. And most people just said, I loved it. But it scared me or like, Oh, my gosh, I didn't want to think about those kinds of things. But I did get a great comment from Sarah, who said, Stacy, can you tell Chris how much my nine year old son and I appreciate it? how accurate it was? Yeah, she has a question for you. She wants to know how difficult it was for you emotionally, to write something like this with so much personal experience from this disease that you've said it's been about four years, or maybe more since you actually wrote the script. But seeing as this really is something scary in terms of end of the world, and like a lot of parents I have like, Oh my gosh, if he's stranded or you know, it's even just like, it could be forgetting his diabetes back at the movies. It doesn't have to be a comet hitting the earth or plane crashes. Terrible. Yeah, we're all scared. Did you get emotional kind of writing this and thinking about carry? Yeah,
Chris Sparling 24:38
I mean, it's emotional. Now even watching again. For that reason. I think it's it. There's another and this is kind of what I was driving at with incorporating diabetes, where again, I didn't want it to seem like just some plot device. Like you said, it doesn't have to be a comet hitting the earth. It doesn't have to be a pandemic that we're all dealing with. But those things there's no Another whole layer for people living with diabetes or any chronic condition for that matter, any medical condition for that matter, it's it there is an another ongoing in a way unrelenting element to your life into the life of the people who care about you. You know, and that's, I think what I wanted to really portray is that it's like, again, even though these people are selected, and that's, you know, not giving away much they are among the very, very few people selected to go to these bunkers in Greenland. You know, someone made the joke recently, it's like, you know, Gerard Butler has saved the president so many times, it's only it's only fair that he's selected. But anyway, so they were and it's like, okay, that's, that's great. But like, that doesn't nothing changes it for at least as of current standards of medicine, nothing changes, the fact that this kid still needs his insulin, and it was emotional in that way. Because we've been there, you know, we've been in those instances, and I'm sure so many people listening have where sometimes stuff can get scary. You know, I talked about the subtlety of it before. And sometimes things can go from subtle or zero to 60 pretty fast. And that by itself, those moments are emotional when they're happening. And so to kind of to try to incorporate them into even something fake. I mean, you try your best to just make it feel real and realistic and kind of pour yourself into it as much as you can. So yeah, it's, it was a you know, so yes, sir.
Stacey Simms 26:19
I promise I will not get too nosy. And ask you lots of personal questions about Kerri. But I am curious, I don't talk to a lot of partners, spouses of partners and spouses of people with type 1 diabetes. And that's a different experience than being a parent or being a person with type one. I'm not gonna ask you to make a grand statement, you know, what have you learned? or What advice do you have? But I am curious, when you met Kerri. And this is a long time ago, as you said, I'm, I don't know if you can remember. What did you think about diabetes at the time? Were you really worried about dating and then getting very serious with someone who had something like this? Do you remember?
Chris Sparling 26:55
Yeah, I do. I had a very limited, very limited exposure to type one, only because a good buddy of mine, he had been for a little while dating a girl with type one, prior to me meeting Kerri. And the standout thing was that she was low one time, and she threw a pumpkin at him. So like, that was my introduction to type 1 diabetes, that sometimes when you're low, like you can kind of like your behavior can be you know, not like, I don't know, something you come out of here, we'd like you to depending and, and she just happened to get like, very aggressive for some reason that that is, and I was like, Wow, so that was a completely rough and probably ill informed introduction to diabetes. And then I met Kerri. And, you know, thankfully, she never threw a pumpkin at me. But But yeah, I mean, it's so I learned it a lot from just being with her and being around her and see how she manages the disease. But I mean, this, the thing is that I met her God, I mean, she must have had it for about 18 years, 15 years, some anywhere from 15 to 1819, whatever it was, before I met her, so she was very accustomed, you know, to dealing with this as an adult, because naturally got as a child, and then I should say, naturally, she got it as a child. So naturally, her mom and her dad, were helping her as a child, but then she, I met her as an adult. So she has several years of managing this disease on her own. And so it was kind of like I had to, you know, again, this is just specific to my relationship with Gary, I'm not trying to map this onto how other people do their thing. But like, I learned the boundaries in a way of like, what is the best way for me to be helpful in these situations. And even something simple, like I learned very early into this day, know that if carry is low, you have an instinct, when someone's not feeling well, for any reason. You're like, Oh, just sit down, sit out, you know, if you're feeling if you're feeling dizzy, whatever, she's the opposite. And then this is just her. She's the opposite. She doesn't want to she doesn't want to sit down. Because sitting down in a way, mentally allows it to settle in more for her. She, you know, she can't fully explain what she's saying. She's, like, I can't resist it, if I'm accepting it. And that, you know, again, it's not some woowoo thing. It just for her. That's it. So, like little things like that. Over the years, I've kind of and then bigger things over the years that I've come to say, all right, well, this is my role in this, I guess.
Stacey Simms 29:07
Getting back to screenwriting for just a moment. You know, there's a lot of I think a lot of people think that any job in the movies is super glamorous. And it's not as difficult as it is screenwriting has to be so difficult to me to think about. Because you're you're pretty much by yourself writing. But I'm curious. Do you have any advice? I mean, for anybody listening who would love to do what you were doing?
Chris Sparling 29:29
Yeah. Um, read screenplays. It's the best education you could possibly get. I mean, there are entire screenwriting programs. You could go spend a couple $100,000 on right now. And I'm not taking away the value of that but at the same time, I would put it right up there with just reading the screenplay a week.
Stacey Simms 29:46
How do you get a screenplay? Pardon my ignorance?
Chris Sparling 29:48
No, it's fine. I mean, just go online. Just Just go to Google and type movie screenplays and I'm sure like the vast majority of movies you've seen in like are you can read screenplays for
Stacey Simms 29:58
Is it still fun for you?
Chris Sparling 30:01
Yes, I this, I've been doing this for, like professionally for over 10 years now it's been my, my job. You know, just like anything else, things start to get a little old. I think for the next 10 years, I think I look forward more to writing and directing more as opposed to just writing. You know, I've directed a couple movies so far, but I want to do more of that I think in the next 10 years will say, yeah, I mean, I still love it. I love what I do. I feel very fortunate that I, you know, I tried for a very long time to break into this industry. And so like, I never lose sight of that. Yeah, I mean, there's certainly days that you just, it's just not happening. You're just trying and you're like, wow, I'm really awful at this. And so no, and, and other days, you're kind of like, Yeah, maybe. I think it's interesting, during, in the COVID of it all, like I've been, I remember, especially, you know, early early on in it, where everyone was on lockdown, and everyone's like, Oh, you must be getting so much done, you must be in so much writing done having all this time. And I was like, I can nothing done. I'm like, I can't get my head in the game at all. And that went on for a while, like creatively, I just couldn't get there. I guess, understandably, given the circumstance. But over time I was. It's gotten easier. I think more than anything. Now. It's just a time thing i'm sure Kerri would agree with this is that because of how we're doing things with, you know, with with us and our kids being you know, home from school, and that's just how we're doing it. It's just, there's a lot of us being here and having to having to kind of shuffle responsibilities back and forth. And so, you know, the amount of time I actually have, and that she has to take it worked on is that's pretty valuable commodity these days.
Stacey Simms 31:36
Yeah, no doubt. So before I let you go, is there anything that you can share with us that you're working on now, in terms of writing or things that haven't started yet?
Unknown Speaker 31:45
Chris Sparling 31:49
You can tell I, you know, I have a long gestating project. Basically, it's an adaptation of Stephen King's the talisman. I don't know if that one's ever going to happen, quite honestly. It's just I mean, it's something that it's it's Steven, not the name drop, but it's a Steven Spielberg project that he has been trying to do for like 35 years, there have been like, I don't know how many iterations of it that just just kind of come together, then he changes his mind or it doesn't happen. And then he moves on and then tries again, and like 510 years later, so who knows if that this one will follow that same trajectory. But that's one that I've been working on for a while, and then and a couple other projects. And then I'm just I just started a new script of my own. So in other words, not like a writing a script or adapting a script for somebody else. Right. You know, it's one that I'm hoping is going to be my next directing project. So,
Stacey Simms 32:34
so yeah. Okay, so we will look for greenlit, I will put all the information in the show notes where people can find it. Anything that we should look for that might be like a diabetes community, in thing I mean, now I have to look for the juice in the grocery store.
Chris Sparling 32:47
Yeah, there's that scene. I mean, there's the pump scene. You know, there's the scene where, um, there's a lot of them. It's not like it doesn't it's not like some small facet of the movie. I mean, it's so
Stacey Simms 32:56
cool. The mom isn't trying to read six until me like the panel there's no like
Chris Sparling 33:01
easter egg thrown in. Right? Um, you know, it's interesting though, because the the LED with this there's Kari asked me this question when choosing interpretive me which again, which is kind of bizarre. She was like, Why? Why does she's even curious. In the movie, the boys wearing an old like Medtronic pump in? She's like, why that old pump? Why not like a more modern pump even more modern Medtronic, but I don't know, I mean, quite honestly, I mean, it's probably the props department that chose that one. And the director approved it. And then they're also clearance issues where you can't just use a product, right? You'd have to get approval from the company. And so I could find out, I'm sure, but still, what I do wonder, and I might have done the same thing had I directed movie is that old model is older model PUMPS LOOK more medical, they look like medical devices where a lot of the more you know, more modern pumps will say they look sleek, they look like cell phones, they look like you know, and so I think for an audience, if the if part of the effort here is to kind of maybe shine a light on this on this condition, this disease, you certainly don't want them to be confused, where they see something like well, what is that? I don't know, it's a phone or what is that? That and, and I think, you know, that's, I don't know what that is. I don't know if that's a fun fact, I don't know how you classify.
Stacey Simms 34:15
Now, that's exactly what I meant that sorry. When because when we look at the screen now we're all gonna be thinking like, wait a minute, because I know my audience, they're gonna pause it, they're gonna look at it, they're gonna zoom in if they can, and you know what pump is that? And that's, that's a really good reason why?
Chris Sparling 34:30
I don't think it's a fun fact, because I don't know if that's the right way. Right? It's like a fun speculation. There you go.
Stacey Simms 34:37
You know, we're bonkers that way we'd like to know. So we'll see what happens. Chris, thank you so much for joining me and you know, for for speculating and for sharing so much of your time. I really appreciate it. Oh, thank you.
Unknown Speaker 34:54
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 35:00
For more information about the movie, the trailer where you can watch it, all of that at the episode homepage at Diabetes connections.com, wherever you are listening, if you're listening on a podcast app, you can always come back to the homepage and find out all of the info. Not every app has a great way to see the show notes. You know, we're on Pandora and Spotify and apple and everyone's just slightly different. So I like to keep it at home base. We also have transcriptions for every episode this year. And we're starting to go back and add them for every episode. So I'm very excited about that. I will also link up the carry and Chris interview that he mentioned, because Kerri scooped me she got the interview first. It was really fun. I interviewed my husband before for this show, and it's a little bit of a weird feeling. But it was a lot of fun to watch them and I recommend that especially if you're a big fan like I am of six until me and of Kerri. Up next we're going to talk about this new at home test kit from jdrf. First Diabetes Connections is brought to you by Jeevan hypo pin, 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 where evoko pen comes in. It's the first auto injector to treat very low blood sugar gvl caple pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give g vo correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G Volk logo g book shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk.
In innovations this week, where we talk about the latest and greatest in the technology sectors and new stuff in our community, I want to tell you about jdrf new T one detect this just came out last week as you're listening to this episode, if you're listening to it when it first airs, and T one detect is jdrf snoo screening education and awareness program. So basically, it's screening you for type 1 diabetes auto antibodies, I'm going to read a little bit from the jdrf website. They say until now t Wendy symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect t Wendy early so they can plan and prepare with one blood test anyone at any age can find out before symptoms even occur. If they are at risk for developing to end, the test is easy, simple and can help save lives. So this sounds great. This sounds a lot like trial net, who we've talked to before, my understanding is that it's different. It's not quite the extensive test. And by that I mean, it looks like a different test, it's a finger prick, and you send the blood samples back to the lab. And then you get your results back. And they say you get next steps as to what they mean and what to do. So I'm hoping that that also means counseling of I haven't seen anything about that yet. Because, you know, that's the only that's one thing about doing these tests, any health tests by mail, right, you want to get the results. And then you want to have somebody sitting next to you telling you what you do with those results. So you're not feeling alone. You know what, if you have these antibodies, you don't know what they mean, you know what I mean? When you click through the website, it actually takes you to enable bio sciences, T one D auto antibody testing, and that's from whom you actually order the kit, you make an account with the company, you can check through your options on privacy, you can decide if you want to make your results available to jdrf. You can say Do I want bio sciences to have my personal health information, there's a lot you can do here. The tests are not free is my understanding. But I didn't see anything about cost anywhere on the website. However, I didn't get far enough through it to actually order the tests. And what's interesting here is that T one detect will be available to people whether or not they have a family member who has type one diabetes, and that's different from most of the other screenings, including trial net. So a lot of questions here. I have reached out to jdrf they have said that they're you know more than willing to come on. So now it's just a question of scheduling. So I'll be putting in the Facebook group Diabetes Connections of the group when we are ready to go with that, and I will certainly solicit your questions and we will get them answered. My biggest question is, why make this separate? jdrf I believe already helps fund trialnet. So why now fund something different when trauma needs money? So I'm going to find out I'm sure we'll learn much more. I am definitely in favor of more research and more testing because boy, if we could test everybody for type one, we could learn so much more about possible prevention and treatment and all that good stuff. So don't misunderstand my questions here for doubter cynicism. I'm just really curious about this new program and of course, we will find out more programming note for the rest of the year. I'll be honest, I'm not really sure we have about two weeks left to go for 2020 and I do have the shows planned out. We're going to do wait wait, don't poke me the Game Show that I aired at friends for life. If you didn't go to that winter conference, you'll be able to hear the show and you'll actually be able to watch it, I'll put it on YouTube the same time the podcast goes live. That's always a lot of fun. And then I have another panel that we taped earlier this year about the type one and type two community with some familiar faces to many of you. And that will be the last episode of 2020. However, as I've said before, there's always some interesting stuff at the end of the year. And if we're able to jump in with some more breaking news, or something really interesting, comes up, you know, it's not like I'm traveling This year, we're all sitting around on zoom. So we will bring you you know, any breaking news that happens in our community, and I basically just reserve the right to throw a new show in here or there. But we are almost done. Holy cow this year, and not much for reflection. I'm not quite sure that I'll do a lot on 2020 I think I need to get a little further away from it and further toward Good Stuff and Being with you all the view more in person before I can really properly reflect but I gotta tell you, I am glad to see 2021 on the horizon. thank you as always to my editor jump you can. It's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon!
In Innovations, we talk about the new Hello Dexcom program
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast.
Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this?
Stacey Simms 0:54
Even now after all these years?
Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute.
Stacey Simms 1:01
He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more
In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. 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 always so glad to have you along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview.
It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment.
But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different.
I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office.
So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that?
It's a USB hub. And what does that do? basically turns one USB slot into three or four.
Stacey Simms 5:29
I remember buying that because I thought I would use it at conferences, but it didn't really work out that way.
Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it.
Stacey Simms 5:46
All right. So how are you?
How are you?
Stacey Simms 5:50
I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today.
I’m such an old man
Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said
it’s gonna be okay, mom,
you said it's gonna be okay, mommy. Yeah, that was tonight.
I'm an old man. I'm so old. That's wild. I don’t remember any of that.
Stacey Simms 6:15
What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that.
And we were at grandma's house in the big screen room,
Unknown Speaker 6:36
right? Like that movie theater room.
And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again.
Stacey Simms 6:49
That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to get a new one.
So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before
and I'm not the best at answering them.
Stacey Simms 7:30
Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions.
Unknown Speaker 7:45
We love them.
Stacey Simms 7:46
And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom
Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time.
Stacey Simms 8:17
Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so?
Are we friends for life?
Stacey Simms 8:26
We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our
local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this.
Stacey Simms 9:07
Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well
I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers.
Stacey Simms 9:32
But also you couldn't really do in your arm by yourself.
I couldn't I got to the point. Yeah,
excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't
Stacey Simms 9:51
remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm.
Unknown Speaker 9:59
I mean Sorry to laugh.
Stacey Simms 10:00
I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun.
Unknown Speaker 10:07
So Geoffrey bullies me. All right.
Unknown Speaker 10:08
I love you, Geoffrey.
Stacey Simms 10:11
You said the inset hurts more now.
Stacey Simms 10:13
So how do you Wow Tell me about your procedure. Oh, you do it?
Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself.
Stacey Simms 10:59
Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh,
Unknown Speaker 11:09
Stacey Simms 11:10
did that Tresiba. Oh, that you see.
Unknown Speaker 11:13
Let me rephrase.
When I think of shots, I think of like the the one with the orange test
Stacey Simms 11:17
syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea?
Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am
Stacey Simms 11:58
I doing this? Even now after all these years? Oh, yeah,
like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute.
Stacey Simms 12:07
That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down.
This is not a good idea. crazy person.
Stacey Simms 12:18
Does the coughing still help?
Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time
Stacey Simms 12:26
and we should explain when you cough apparently you kind of confuse your body for minor pain.
I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body.
Stacey Simms 12:43
So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting
I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera
Unknown Speaker 12:58
camera. He just like jumped off his chair. Maybe another time.
Stacey Simms 13:07
Right back to our chat 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 where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar, Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.
People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah,
I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to
Stacey Simms 14:14
I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself.
I don't remember that.
Stacey Simms 14:22
Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it.
Yeah, it's kind of just um, and kind of just happened.
Stacey Simms 15:07
I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6.
How did you pretty me forgot? Like I forgot. I thought it was like, I
Stacey Simms 15:17
don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house.
Unknown Speaker 15:38
Oh, I do remember that.
Stacey Simms 15:40
And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long.
It just tell us. You said you can't do it anymore. You said you can stab your son anymore.
Unknown Speaker 15:57
Oh my god. Hey,
tell me. So
Stacey Simms 16:00
tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun.
Working out in masks outside in 50 degree weather is the best thing I've ever experienced.
Stacey Simms 16:14
What happens when you work out with diabetes? Because you work out a couple of times a week outside of wrestling too. I know, to me, you kind of act very casual about it. But what do you take into account? Like, how do you do that?
I'm very casual about it. Yeah, I pretty much just go into workouts. Like, if I'm above 120, and I bring food. And if I go below 120 I eat food. And then wait till I'm above 120 and then go back in. That's pretty much it.
Stacey Simms 16:42
That's that's super casual. I mean, at least you pay attention and you know, do what you need to do.
That's pretty casual. You see, I think you're replacing the word casual with lazy. Lazy would be like I'm 90. Let's do this.
Stacey Simms 16:55
Oh, I don't I don't know. I mean, you want to have an actual workout for the time that you're there. So you take care of what you need to take care of.
Yeah, because if you didn't, then you die. Well, don't worry, or it's a waste of time come in energy.
Stacey Simms 17:06
Yeah. So here's another question for you. I'm curious though. after your workout. You know, occasionally that pump doesn't get put back on
will because I go to the shower and shower last like shower for like two to three hours. Look, hot water and music. Very nice. Okay. Shout out to Tandem. Control IQ is very well, sometimes. You know, we're having some problems.
Stacey Simms 17:37
Yeah, well, we're just having some problems with Control IQ. We think the transmitter and the pump are not getting along right now. Each of the last four weeks have been ridiculous. We've gotten really used to control IQ.
It's great. It's really nice when it works.
Stacey Simms 17:48
Yeah. What is the diabetes chore that is the biggest pain for you.
Oh, filling a cartridge
that definitely filling a cartridge just
Unknown Speaker 17:56
because I said that for No, no, no.
It's definitely filling a cartridge pain in the Can I say a bad word? No? pain in the butt. Why? Because look, it's just annoying. Yeah, I have like 10 units less. Like at night. I have like 10 units left. And I'm like, Huh, I know, I have to go all the way downstairs and fill a cartridge. Right? You're all cozy in bed. Yeah. Like I'm about to go to sleep and I get I hear the stupid Animas alarm. But
Unknown Speaker 18:24
that's not the Animas alarm. You're First of all, whatever. You haven't had an Animas phone for four years.
Did I say Animas? Oh,
Stacey Simms 18:31
do you remember the Animas alarm?
Unknown Speaker 18:33
It was um, Beethoven?
Stacey Simms 18:35
Yeah. Because I can't. I can't hear Fur Elise without like.
But there was just like that very part. It didn't go on. It was like, Dude,
Unknown Speaker 18:46
that was it. Maybe they couldn't get the rights.
They? How did they How were they legally allowed to use that?
Stacey Simms 18:52
I think it's public domain. Is it? I think I think most classical music is Yes. Really? Yeah. You are not doing untethered anymore. We referred to that earlier. That's when you took about 50% of your basal from Tresiba long acting shot, and 50% from the pump with control IQ and with your body mind changing, right. But we didn't need to really do that. What did you think of that? Was it worth it?
I think at the time, it was very nice, because it significantly decreased the amount of times I had to change my cartridge. And that was really one of the main reasons we did it. And did it work like a charm. It did.
Stacey Simms 19:27
And it was also about changing that inset. Yeah,
well, that's different perhaps.
Stacey Simms 19:32
Well, no, I mean, I'm not talking about nagging you to change your inset, which I still do, apparently need to know. But I mean, we thought that there was something wrong with the inset somewhere. I don't know if you remember this. We tried different needle lengths. We tried different types. Right. We went to the longer needle and was just overloaded. It turns out by the amount of insulin we were trying to push through. So once we took half of the insulin away from the inset, it amazingly worked much better. Would you recommend untether You know, for a teen or somebody like I would
recommend it for someone that is using more than half their cartridge today will no more than a quarter of their cartridge a day and is a teenager if you're an adult?
Stacey Simms 20:12
Hmm. Why? Why do you think adults wouldn't do? Well?
I don't know. Like, it just feels like something that like, you know, teenagers have that like a hormonal imbalance. And I feel like it's just significantly easier to control it with a untethered,
Stacey Simms 20:27
I just felt bad. I'll be honestly I felt bad that you had to take an additional shot every day. Well, no,
I mean, I took that into like account mentally. Like I was like, I mean, is it worth it? And I was like, absolutely. It really was. I think that's one of the main things you should consider if you're looking into untethered. Like do you want to do another shot every day? And can you remember cuz I forgot sometimes. Yeah. But Tresiba is really forgiving? Tresiba is extremely forgiving.
Stacey Simms 20:49
Yeah. But it was amazing. The results were amazing. Not just with the cartridge changes, but with your agency and time and range, all that good stuff. Okay. So if it's a big if, if all goes well, you will be traveling to Israel, Summer of 2021 for four to four or five weeks.
Without anyone in my family.
Stacey Simms 21:07
Yes. But with camp with a camp group. What are your thoughts about diabetes? Are you nervous? Are you
a little nervous that I might run out of insets? Oh, and maybe insulin? I mean, I'm sure I won't, I'm sure we'll have an excess. I don't know, like being in a foreign, like, couple thousand miles away for the first time plus diabetes is? I mean, it's a little scary, like, truthfully, it's a little scary. But I mean, I think the fun and the the excitement significantly outweighs
Stacey Simms 21:41
I think you're very smart to worry about those things. Because unfortunately, you have to think about I think the most
thing, the thing I'm most worried about is my Dexcom not wanting to work. Oh, yeah. at Camp Carolina trails may rest in peace. The last year I was there, the second my phone was away from me, my Dexcom just did not connect to my pump once that entire week. And I really do not want that to happen.
Stacey Simms 22:06
Yeah, I remember that. That was um, that was 2018 2017, something like that. And we tried the Liebe re right, because I was kind of a backup plan. And then you were like, I'm just a diabetes camp. Forget it. And you did finger sticks all week. But that would not be fun.
Well, as I've made it abundantly clear. I think they give they their own you too much?
Stacey Simms 22:25
Well, they're ensuring your safety. Not everyone is is casual. But here's my here's
my thing. Here's my thing, right? If you have a Dexcom and someone like someone, a parental Guardian, gives it the Okay, why should you have to do a finger stick?
Stacey Simms 22:39
Well, because there are probably medical guidelines that they must go through, because they're not your parent that makes no sense. What if the parent
or guardian signs a waiver that says you can go completely off Dexcom?
Stacey Simms 22:51
Like, why would that not everybody does as well with the Dexcom as you do,
so that's why it's an that's why it should be an option to sign off to allow the parent or guardian to allow him I'm just so
Stacey Simms 23:01
happy someone will will take you that. I don't I don't sign anything special. I just say Will you put up with him? Here? Here? Take No no, no, no.
It's me putting up with them. Okay, it's very different. All right. Oh, my God. Look, I love the people there. But your policies I disagree with? I'm sorry. They're
Stacey Simms 23:18
shocked those the people that we know that are listening. Benny's never said anything like this to us. We've never heard him complain about anything. What a shocker.
You were Rufus. That was so much fun when we used to actually get together in person Tell me why it was fine. I
love that like the Okay, so, one, there was one day where I was walking down the halls and the second was with all the kids in there like, like the in the place where the parents sent them way to stuff dealing with them.
Stacey Simms 23:46
Like the child care theory.
That's what it's called. I see. I don't know, because I never got sent there because I refused. But like, those kids loved me. And it was it was so much fun. Like I really don't know how to explain it
Unknown Speaker 23:58
to me cuz you didn't have any training. Really? You've never been a mascot before the run in Davidson.
Oh, the JDRF Well, yeah, that was a lot of fun to do. The one the one with the kids though, was definitely the most fun. Like they just like their eyes lit up. They're like, Oh my God is this Oh my god. Oh
Unknown Speaker 24:14
my god, guys, look. Oh
my god. And you're in there and you're hot. And you're Oh my god, I'm so hot and disgusting in there. And I'm like, I'm like in this giant bear costume that all these little kids are hugging like a third of my leg. And I'm like, and I'm like dying inside. like half the time. I'm like genuinely smiling and the cat the other half the time I'm like dying on the inside because of how hot I am.
Unknown Speaker 24:34
But it was fun.
Oh my god, I do it 100 times. It was so much fun.
Stacey Simms 24:37
That's great. If you were to talk to those little kids outside of the room costume we don't want to scare them. Anything you would tell them about diabetes any Did anybody ever seen that helped you like anything that you'd like? Oh,
it's like I've said like 100 bajillion times and like I just said, Do what you want to do and don't let the stinking diabetes stop you. It shouldn't be something that stops you.
Stacey Simms 25:03
Alright, so I'm gonna I'm gonna make it more difficult because diabetes can definitely stop you, right? diabetes slows things down. Dude, how many times have we had to like change an incident a bit when I say stop? I
mean, like, like for a week, like you're just I don't want to do anything?
Stacey Simms 25:20
Well, I think it's important to talk about that because some people here don't stop and they think like, anything that goes wrong is a bad thing. And it's their fault, and they feel bad about it. And that's not what exactly what you mean.
Yeah, no, if something goes wrong with diabetes, the first thing you should think is it is not your fault. You did everything you could, something went wrong. Now, pick yourself out, figure out what went wrong, and try and fix it. And if it doesn't work, you track up someone else to help you.
Unknown Speaker 25:50
And you sounds like the Waterboy.
Unknown Speaker 25:55
That's some high quality h2o.
Stacey Simms 25:59
All right, you are almost 16
Stacey Simms 26:03
Let's talk about driving. I know that you think you've got it all in the bag. Absolutely
have it in the bag. I'm
Stacey Simms 26:09
the best driver this oh my god knock wood. I'm gonna swing a dead chicken over my head. And say a Kenohora the bad luck you just brought on yourself.
Don't do that English. I don't think a word you said there was English.
Stacey Simms 26:20
Just you know, take it easy. Take it easy, my son. It's a big milestone in anybody's life. But certainly for people with diabetes. I mean, we've gone over our like little protocol. And oh, here's a question for you. It's kind of about driving. So this is the first time I remember in your diabetes life where you've said, just give me the glucose tabs.
What's up with that? Well, I never liked the flavor of glucose tabs. I always thought they were kind of gross. But you have to take into account the convenience of them, they won't burst like I've had a lot with juice boxes gone, they won't melt, like gummies if I don't touch them for three weeks in a compartment in the car. And they really don't
Unknown Speaker 27:01
taste that bad.
So when it comes down to it, I'd much rather have something that I can I know will be there when I need it. Then something that tastes better.
Stacey Simms 27:10
Unknown Speaker 27:11
I know I'm so awesome.
Give me a card
Unknown Speaker 27:15
that you get your car. I got you a whole thing of glucose tabs,
Unknown Speaker 27:19
like the big ones. Yeah.
Stacey Simms 27:20
compartment already. That's
Unknown Speaker 27:23
orange, you glad I didn't say banana?
Stacey Simms 27:28
Sorry, I think we're good. What else? Should we What should we end on here?
What's it like? hearing other moms experiences with their kids with diabetes compared to your experience with me?
Stacey Simms 27:38
Oh, my gosh, it can be very difficult. Because I think I'll be honest with you, I think a lot of moms do a, quote, better job of managing their kids diabetes. And I have some guilt that I've given you so much independence, and that I haven't. No, no. juries not here yet.
The jury is definitely.
Stacey Simms 28:00
But I have some guilt that I haven't done as much as maybe I could have over the years. And I know that world's worst diabetes thing is a joke. But it's sort of kind of not sometimes. But on the other hand, I look at you. And I feel like while you may not be a perfect person with diabetes, you are not afraid of it, you respect it, you take care of it, but you're not afraid of it. And you don't feel You don't seem to feel guilt about it and you don't seem to be negative about it. You've never given up an opportunity because of it. And that to me means I'm doing okay. As you know, I talk to a lot of moms, especially in the Charlotte area with this this group that we have, and they're on the shortlist. It's it's a Charlotte parents. We have some dads, also moms, but it's it's a good question. Because I don't think um, and I think with with all parenting with your sister, too, I think that you know, there's no finish line. So I always feel like we could do better, we could do worse. But you know, if you guys are healthy and happy, then I feel okay. But it's a good question, because it's a really difficult one.
Well, thank you for coming to my podcast. We'll love to have you in about two weeks.
Stacey Simms 29:10
All right. Another one another question for you them. Ah, all right. We said how much we left control IQ stop. He said how much we love to control IQ. And I don't even know if you know what's coming down the horizon if I've kept you posted on the thing. What are you looking forward to in diabetes technology in the future?
The 80% thing?
Stacey Simms 29:27
Oh, and the next edition of the control IQ that will bolus you more robustly.
Yeah. Because while it works great, it is still not aggressive enough for me because I tend to rely on it a little bit more than I should.
Stacey Simms 29:39
Well, you, you know it would be really nice not to have to bolus for every meal. I think it'd be
really cool if they could find out a way to know exactly what and when I am eating. Well, there are some elders that thing that like senses when like you told me about the senses when you're moving your hand like
Stacey Simms 29:56
you know, there are some algorithms that are You're just gonna have to tell it you're having a small, medium or large meal, and it should be able to do all the work for you.
I feel like that's gonna that's too big of an umbrella of food. Because like if I'm having a small meal that could be like a bar, or it could be like a bunch of fruit. That's true. I feel like small, medium and large is too big umbrella. Well, it is. That would be a great first step, but definitely ensure my direction.
Stacey Simms 30:23
All right, so you're looking forward to more bolus power.
Yeah. All right. Two more automated bolus power.
Stacey Simms 30:28
Yes. I like that. I'm looking forward to that, too. I'm also looking for better insets As always, because we know those are the weak link of pumping. And I'm also really excited about the smaller cgms that are coming the deck.
I can't wait for the Tandem. The Tsport Oh, yeah.
Unknown Speaker 30:44
What is that supposed to come out?
Stacey Simms 30:45
COVID has knocked everything down. But probably something's coming
to a store near you in 2022.
Stacey Simms 30:51
My guess I mean, it's a guess is late 21. And that'll be fun to try because it will also allow you to try new sites.
Unknown Speaker 31:01
That's really funny.
Stacey Simms 31:02
all right, Benny, thank you so much. Happy diversity.
Unknown Speaker 31:05
Stacey Simms 31:06
I want to give a gift to you. When this airs. It's gonna be an Hanukkah. Say goodbye, like people on your age on YouTube.
Don't forget to like and subscribe and share and comment down and make sure to check out my merchant the description below.
Unknown Speaker 31:19
There you go. Perfect. Bye fam fam.
Unknown Speaker 31:27
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:33
So I have to say, in between a lot of the silliness, I was really excited to have Benny's answers. We really, he told me a lot, I hope you got a lot out of that as well. And again, at the very end of the show, a couple of I guess you could call them bloopers, although it's just us being ridiculous and silly, if you want to hear that. So that's at the very, very end of the show.
I also wanted to mention the issue that he alluded to there with his Tandem pump, you probably are aware, he uses a tandem t slim X to pump with the G6 from Dexcom. And the whole system together with the control IQ software. We've had that since January of this year. And it really does work like a dream. It's a long story. But I'll try to keep it short here. And the basic problem is that the pump and Dexcom are not communicating as they have been for years and years. So it's really become a problem because the follow app and the Dexcom app are working fine. But the control IQ cannot work when it's not getting a signal from the Dexcom. So we've been troubleshooting this with Tandem for a couple of weeks now. They've been really helpful, but it's just taken longer than it might have. I don't know how to quite put this when I was more in charge. Because Benny is great. But he doesn't tell me right away. So when we troubleshoot and things are fixed, I think they're fixed. And then when I check in with him, oh, no, they're not fixed. So I really had to sit on him for this. And Tandem has been great with customer service. And I think we're almost to the end of fixing it. I'll keep you posted.
I think the only other thing from the interview I might need to explain is that he said something about camp Carolina trails is over, you know, the diabetes camp where he went, basically it was just kind of a change of camp in our area of the ADA had American Diabetes Association had run his diabetes camp like it does so many for many years. But things changed a couple of years ago. And now we have a local group that runs the camp. And it's pretty amazing to have that. They're really cool people and we'll have them on again, I'm sure to talk about all the good stuff that they've done because they do a lot more than camp. It's the diabetes, family connection. They have great Instagram accounts, some other stuff, but very cool people, we're really lucky to have them in this area, and they took over the camp and have done a great job despite what Ben he says he's such a complainer about that stuff.
All right, I want to tell you about our innovations segment in just a new program from Dexcom and Diabetes Connections is brought to you by Dexcom. As I said, we've been using the Dexcom G6 since it came out. It really is amazing. It is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. I know it sounds silly to a lot of you who are newer to CGM, that's amazing. It really is wild. to not have to calibrate we have been using Dexcom for seven years and it just keeps getting better. The G6 has longer sensor wear and the new sensor applicator as Benny said it's so easy to use. We still love the alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Innovations this week a new program from Dexcom. And of course when I talk about them or talk to them I always like to disclose as you've just heard, I just did a commercial for Dexcom and they do pay me to talk about them in the commercials of this podcast, but what you're about to hear is not part of the endorsement, they did not pay me or give me anything to talk about this. I think it's interesting. And I'd love to know your take on it as well.
This is a program called Hello Dexcom. And it is a new sample program. So what's gonna happen here is that people are going to be able to try a G6 system at no cost. They basically get it at their doctor's offices, it says - and I'll link this up in the Facebook group as well and in the show notes on the episode homepage - but it says whether provided to a newly diagnosed patient to get them started on CGM right away, or a CGM naive patient who wants the opportunity to try the device before committing to a personal system. The Hello Dexcom sampling kit allows people with diabetes to experience the life changing power of CGM, they get the transmitter the sensor and access to a digital experience. They call this a 10 day digital empowerment journey to ensure they get the most out of the experience and understand if CGM is right for their personal diabetes management.
Now, I of course had lots of questions. Look, we've said a million times CGM is going to be standard of care. There are 39 CGM systems in development, who knows how many are actually going to come to market in the United States or in other countries, but this is going to be standard of care for people with diabetes. So more people getting on CGM might be a great thing. I don't know, I am always concerned about education. I see it all the time. And I've you've heard me tell this to Dexcom. And to pump companies until the break, people get this stuff on their body, they go home, they don't know how to use it properly. They don't know how to use it to its utmost. They don't know how to use it so that it helps them thrive rather than holding them back. We just need more education. Obviously, this is a soapbox issue for me.
So I asked, and I'm gonna take you through the QA that I did with Dexcom. So this was an email back and forth. I'm going to read you my questions and their answers. If you prefer to read. Look, every episode this year has a transcript. So this will be in the transcript if you prefer to read it. I know especially with my scratchy voice, it might be kind of hard to listen to. It doesn't matter to me, if you want to read if you want to listen, that's going to be the next two to three minutes of the show.
So here's what I asked, Does the patient get the sensor and transmitter with no commitment or insurance coverage? They said yeah, since Hello Dexcom is a sampling program. It's available at the doctor's office comes at no cost to the patient. So I said since the transmitter lasts 90 days, what happens at the end of the 10 day trial period? Does the patient choose to continue on with the same transmitter? Or do they just throw it away? They said at the end of the 10 day sampling period. If the person chooses to stay on Dexcom they will be able to use that transmitter until it needs to be replaced. I'd like to know more I wrote about the digital empowerment journey. What is that videos personalized instructions. The digital journey they wrote is a 10 day email series that walks the user through how to make the most of the GS six. Once a user receives the Hello Dexcom kit. they'll receive instructions on how to set up their online digital journey. They go on to say they'll get the dexcom clarity app they'll share that with the physician once the sample period has ended. There are checkins in the form of email, which share more information they can get custom alerts and allow others to follow through Dexcom follow.
who is the daily check in with I wrote the patient's doctor a Dexcom employee? If it is the latter, is it tech support or a diabetes educator? emails are sent to the patient every other day, they wrote as part of the empowerment journey. But users will also have access to customer support to assist throughout the process. At the end of the sampling program, users will meet with their physician to discuss their experience and review their clarity results.
And finally, I wrote this might be an unpopular question. But I know my listeners will want to know if Dexcom can afford to give away this many sensors and transmitters. Why not lower the price for existing customers? Here's their response. A lot goes into creating this technology. It takes years to develop, study and gain approval. And then of course you have to market it raise awareness and encourage people to use it. The Hello Dexcom sampling program is part of that effort to raise awareness and adoption of Dexcom CGM to help people control their diabetes. They went on to give me some information about coverage. I'm going to link up if anybody does need help paying for their Dexcom. Or if you need information about Medicare and Medicaid, I will link that up as well.
But I think these are questions that need to be asked because from a sales point of view, this is a home run program, right for Dexcom. You go to your doctor, I'm not sure if I want to use a CGM. They have the professional ones they could put on you where you don't see it. These have been around for years and years. They put a CGM on you. But you don't look at the information. The doctor gets it and uses it to help with care. Or maybe it's a way to test out the CGM. But this is a much better way to test out a CGM, right when you get to keep the transmitter when you're done. So this is a really cool program. But I could also see some confusion because we know enough people who get educated by educators right they they meet with the CDE they Meet with a Dexcom trainer. And then three days later, they're in my group saying what happens? Why do I have down arrows? What does it mean? If I have signal loss? Where can I put this on my body and all the things you've seen in all the groups you're in? So I do think that we need so much more education.
But this is a really interesting program. What do you think? Hello, Dexcom? Is that something that your doctor has talked to you about? It's brand new in December, but by the time this episode comes out, it'll be out for a little while, love to hear your thoughts on that. And again, I will link up more information in the show notes.
As we come into the homestretch of 2020. I know most of you cannot wait for this year to be over. But I have a feeling there's gonna be a few interesting technology drops before the end of the year. That always happens in late December. So I am braced for it, which means probably won't happen this year, because I'm ready. But I do have some great interviews lined up, we are going to be heavy on technology in 2021, I have decided, it's what I'm really interested in what you're really interested in. Of course, we're going to tell the great stories from our community. And we're going to keep talking about access and affordability. But I am very excited to talk to new pump companies to talk to new CGM companies to check in with our friends and find out what's happening at companies like Tandem and Ypsomed, and Medtronic and all the stuff that's coming out in the next year or two. So we're gonna be heavy on technology. Let me know what you want to hear. If you work for one of these companies. Come on, reach out, we'd love to hear from you. listeners to this podcast are smart and savvy. And if you let them, they can help you. They're fantastic for focus groups and studies and they really get it so I didn't expect to make a pitch that way. But if you have a pump CGM technology diabetes company, email me Stacey at Diabetes connections.com we can definitely get you the ear of people that are hungry for information, want to hear from you and want to help you because we don't want you to make advances or what you think are advances. We don't want you to move ahead. Without us. We want our input to help make your products better.
Stacey Simms 42:03
thank you as always to my editor John Buckenas from audio editing solutions. Thank you, not only for listening, but for being there. I mean, I'm not just an announcer in this community, right. I'm a mom, you heard my kid. You know, we need you. We need each other. I'm honored a privilege to serve this community. And I'm also so grateful to be part of it. So thanks for always being there. For me. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections, is it production of Stacey Simms media? All rights reserved. All wrongs avenged?
It's like I've said like 100 bajillion times. And like I just said, What?
Unknown Speaker 42:54
Making a face that you just say it?
Unknown Speaker 42:56
Am I not allowed to go?
Stacey Simms 42:57
Fine. Take your time.
Unknown Speaker 42:58
I'll take a sip of tea.
That's That's her taking a sip tea. You're gonna laugh You are laughing. Tea. Yummy. Here's the tea.
Unknown Speaker 43:20
Oh my god.
I think you should not edit this at all. That's
Unknown Speaker 43:23
gonna go at the end. Oh, that laughing
The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what's new and take some time to focus on their effort to reach more diverse voices.
In Tell Me Something Good, a big diaversary to celebrate.. Stacey's son marks 14 years of type 1 diabetes this week.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen the first premix 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 0:27
This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what's coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now
Amy Tenderich 0:44
stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I'm using By the way, I've been looping now for quite a while and it's a game changer.
Stacey Simms 1:00
That’s Amy Tenderich, founder of DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share
In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven't told before. I was always the worst.
Welcome to another week of the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast.
I'm going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It's a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness.
I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don't tell me, which is a really fun game show. If you've ever listened to it. I do Wait, wait, don't poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we're starting to work backwards. So hopefully eventually, I'll have a transcript for every episode of the show. Thanks for your patience on that.
All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop glucose meter looks nothing like a medical device. It's 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 and 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.com and click on the One Drop logo to learn more.
My guest this week can be summed up I think in the motto of the conference. We're about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you're not reading it, I'll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you're interested at all in technology if you want to learn personal finance stories to they do that it's a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It's something she was already working on, as you'll hear before, the events of this year brought it to the forefront for many people who maybe hadn't considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it's always great to catch up with Amy.
Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks.
Amy Tenderich 5:46
Oh, thank you for having me.
Stacey Simms 5:49
first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup?
Amy Tenderich 6:09
Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I'm in the events business. And now we have COVID. And you know, what's going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we're not going to all these in person events. You know, most of us feel like we're just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that.
So it's not just people sitting and watching, you know, one presentation after another, especially when everyone's doing so much of that these days on zoom. So I've been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that's so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you're able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you're talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it's you know, it's sort of oriented by table. And then what if you want to work together with the people at your table, there's even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn't have to kind of recreate that whole wheel of just understanding how the online platform works. You
Stacey Simms 8:48
know, this conference is so well known, as you said, leadership technology, things come out. And we'll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation.
Amy Tenderich 9:06
So yeah, what happened there? It's actually I'm kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it's sort of something that's a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it'd be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we're happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can't represent everyone. And they sent me to get more voices involved.
So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you're familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we'd had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what's good, what's bad, what would they like to have changed, see change, I said, it's completely up to you guys. So I don't know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what's disappointed them or why they do the work they do, or what they would like to see change. And it's just what, you know, I can't I talked about this session is sort of unveiling what's been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes.
And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it's kind of a one off, it didn't. It's not necessarily racism, it's just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there's a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren't going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there's always some people who start and don't complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that's posted online that we'll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They're worried about costs and access, and you know, finding a physician who's empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don't feel represented, they need to see more people who look like them. And that's everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product.
Stacey Simms 13:43
Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that?
Amy Tenderich 13:55
Is the million dollar question. And that's actually one of the things where you feel like you're sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I'm like, What do you mean, I'm still recovering from this.
Stacey Simms 14:12
Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I'm so glad that we had dexcom Benny's influence started going way up around age 11. He's almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He's so much taller, everything's different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We've been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny's a one C and overall health, if your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what's next.
Amy Tenderich 15:19
So I don't know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it's just about affordability and access, it's an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I'm a conduit, but I'm not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who's working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what's happening out there and then address those things. And, you know, really keep it fresh and timely. So that we're really having conversations about the things that are like currently on top of mind,
Stacey Simms 16:49
it's so hard to predict, certainly, right, what's going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it's hard to figure out what's really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I know Dexcom spoke there was the there was a loop link. I mean, was there anything that really struck you or that you want?
Amy Tenderich 17:19
Thank you for asking. So the fall event is actually this two day thing where one day is kind of our broader Innovation Summit, it was our first event that we ever did. And then the second day is D-Data where we go really deep on the technology. So that's why this time, the first day, we did a featured panel on telemedicine and like whole person care. That was very cool. That included Vita Health, One Drop, health first, and what’s the fourth person, fourth group that was there. I can actually look it up. But yeah, but we really because obviously telemedicine is now just medicine. Right? Right. Right. You know, it used to be the sort of add on thing that you could do if you wanted to, but you know, now it's really how care is being delivered. And the whole notion of like, Can we get past just focus on glucose numbers and lots of coaching combined with technology. And then they're trying to help people with like a variety of health conditions while doing really high quality diabetes care. So we have this great talk about it. And I'm sorry, January AI was the fourth company and they are this amazing new machine learning based company out of the Stanford area that is actually doing a platform currently for type two diabetes, but I think they will be expanding. And that group also did a demo on day two, the first day again, was kind of this broad look at like what's going on in healthcare and diabetes care, that's when we had our inclusivity and diversity panel, we also had an interactive group problem solving exercise where we got people to we had a little It was kind of like choose your own medical adventure. It was this video of this, like a sort of mock patient and had her talk about her issues that she's facing. And then there were sort of three choices of what you could recommend for this woman to do as sort of her first line of defense with her diabetes care. And then we had people discuss that at their tables and decide and then vote on which one they would pick first. And then we showed what how they played out in real life, you know, and in order of what people chose as the first choice, so we'd have to do some really cool stuff to get put people kind of in the shoes of a health care provider but also in the shoes of the patient as in again, we have a mix of people at these events.
So you've got you know, diabetes educators there and endocrinologists and even some like nutritionists and other people who are recommending stuff to patients and then you have patients who are you know, walking the walk and so it was kind of a cool way for them to discuss like, Okay, if you recommend this to this woman, like what are the pros and cons gonna be? How is this gonna play out? That was really fun. I we like to put people in the driver's seat and kind of see what they do. And a lot of this event is about the fact that you might have someone who is like, You know, really big has big following online as a patient advocate sitting next to you know, the CEO of some major pharma company, sitting next to you know, someone from FDA, and then all these DIY folks mixed in. And you know, we've got healthcare designers, and we've got educators and someone who might be the head of the you know, Joslin Diabetes Center. And so they get a chance to kind of interact and great networking, and I think really gives people a lot perspective and helps to break down barriers between these groups. You know, it really does.
Stacey Simms 20:31
I was there two years ago, and it was the first time that I was in the same room as somebody from the FDA. And I remember thinking, This is amazing. And it turns out that part of it was my fault. Because as they explained to me, when I asked like, how come I haven't seen you before, you know, basically, you can come to us, and here's how, and I have put that information out, and I will again, but it was it was one of those situations that you know, I've been in the diabetes community for 12 years at that point. And it just hadn't occurred to me that I could have access to somebody like that. And this is a, you know, a public servant, really. And they explained how to do it. And you know, what the deal was, and it was funny to me, because I while I have a podcast, I'm a diabetes mom. Right? So it was a really nice, you know, lowering of by perceived at this as this boundary. And I'm sure that many other people feel that same way. It's It's nearly as you said, it's a lot of interesting people in the same room.
Amy Tenderich 21:21
Yeah, thank you. And I mean, that's why I had this little panic attack when we, you know, when they close down all the Yeah, person events, like, how can we recreate that but, you know, as much as it gets old, being on online stuff all day long. It's amazing what you can accomplish, really. And you know, there are some, like I said, Great platforms that are being improved upon. So after we use this platform in June, we actually gave them feedback about what we would like to see. And they've made some progress, like, yes, it's really great.
So you're asking about the non invasive cgms and whatnot. So CGM, obviously is this burgeoning area. So our opening speaker for D-Data this time on Friday, November 6, was Kevin Sayer, the CEO of Dexcom, talking about the future of CGM. And clearly, I mean, if anyone's qualified to do that, it's them. They've led the way. But there are dozens of kind of want to be you know, me to CGM companies coming out, they're doing all kinds of stuff from implantable to, you know, non invasive to semi invasive to just straight up Dexcom copies. We did a story diabetes might not long ago, something like 39 new companies working on cgms, you know, yeah, so there are many, many of them. Obviously, the non invasive or minimally invasive feature has been a dream for so many years. And there was this white paper written years ago called the deceitful Turkey, by an expert physician who had been researching it for so long, it's a very difficult thing to crack to be able to get something that is accurate and really usable. That doesn't penetrate the skin at all. But then you've got companies like bio link that are working on like they call minimally invasive with these like micro needles. So it's not drawing blood, but it's sort of like pokes into the skin very minimally. Mike Hoskins and I, who's my main man diabetes, mind, we were just talking about this the other day that it's probably time to do another story to sort of explain where we are with non invasive technology. Because Yeah, nobody's really done it yet successfully. But there are lots of companies that are just on the verge of having something really viable, which is exciting.
Unknown Speaker 23:27
I'd read that story. Yes, definitely.
Amy Tenderich 23:31
You know, especially now that you know, one of the big hot topics is the idea that CGM is going to become really, truly become standard of care and become more widespread use even among people who are not on intensive insulin regimen. So it's like what is going to help them be comfortable wearing it and get the most out of it. And we had another interactive session on Friday. And that was all about that it was a mock. We had people at their tables pretend that they were like a design group making a new CGM. And they had to pick their priorities for designing the CGM, and talk about why they did that. And were they trying to simplify data learnings for people? Were they trying to make it more motivational to use a CGM? Or were they trying to kind of like increase the consumer appeal and have it you know, have this kind of sexy look and feel. But I think a lot of people agree that especially for non insulin users, you know, the, the physical factor of the sensor is going to be a big deal breaker, right? But
Unknown Speaker 24:26
Amy Tenderich 24:27
yeah, there's just so much going on. And you know, it feels like it never changes. But then again, if you look back, it's like, wow, things have really changed so much, even since we started doing this. And well,
Stacey Simms 24:38
and that's what I want to ask you about too. We are not waiting. The phrase, as you obviously know was coined at the D-Data exchange. I was at the first one in 2013.
Amy Tenderich 24:50
That's correct. So we started doing the Innovation Summit in 2011. So we had two of those events. And then the third year, it became clear that there were Are all these sort of people out there who were tinkering and you know, doing yourself the sort of technology savvy, it started with a group of D dads, basically diabetes dads who work in technology, who were like, Hey, we can do stuff with this. So and we decided that we would host a get together for those folks. And we were doing the summit at Stanford School of Medicine, that we just did it as a pre day to our summit, the day before, we got this sort of classroom, in this bio center directly across from the big hall, and just invited a bunch of people who were happened to be, you know, in or near the Bay Area, who would be able to come and we thought we'd have, you know, 25 people or something. And we were smashed in this classroom with like, 50 plus people, and there was all this excitement, and everybody was like, sharing their, what they're doing. And we kind of realized, like, wow, we're really onto something. And I want to give due credit to Howard Look, and Brandon Arbiter, from Tidepool, who really helped me I, you know, they were just coming on the scene then too. And so we were having all these conversations, and I said, Hey, you know, I really want to do this event, you guys want to help me, like get this group together? So we worked on it together. And what happened is the next day at the summit, I had asked Howard to get up and sort of summarize what happened at this D-Data exchange thing. And he kind of, you know, presented this term, which I believe the first person to utter it was Lane Desborough who is also a diabetes dad, as you know, and then worked at Medtronic for many years, and then was at Bigfoot for a while. But he basically said, what I'm hearing here is that we're not waiting. We're not waiting for the, you know, industry or for the FDA or for anyone to tell us it's okay to do this. We can do it. We're doing it. Yeah. And yeah. And then it's, you know, just as you know, absolutely blossom from there. So,
Stacey Simms 26:38
as you look back at that, and it's been seven years, and it seems like as you had said earlier, it seems like things are moving so slowly and things would never change. And now Surely, there's a long way to go, right. It's not perfect. But now we have hybrid closed loops. On the commercial level, we have more DIY stuff, we have DIY stuff that might be going to be FDA soon, thanks to type pool when you look at the last seven years and your own diabetes management. And if you don't mind me asking, what are your thoughts about how far we've come since lane said it, and Howard wrote it on the whiteboard, you know, we are not waiting. It's pretty remarkable to look back at these seven years.
Amy Tenderich 27:14
It's absolutely remarkable. And it's stuff that seemed like such a pipe dream at the time, like this whole idea of a closed loop system, it was like kind of eye roll or like, but now we have a very viable Do It Yourself homemade pancreas closed loop system, which I'm using, by the way, I've been looping now for quite a while. And it's a game changer, you know, and now the industry is coming out with them, it's a little slower. And obviously, on the industry side, you know, they have to, you know, there's so much risk averseness they need to be really careful. So they're, you know, have to make incremental changes. But we're getting there, I think soon. Again, you know, the idea of just getting a pump without a CGM, or even a smart insulin pan without something connected to it would just seem silly, because it's like, of course, you want to have the whole deal so that you can both continuously monitor your blood sugar and then also get help or have it automated to decide your dosing your ideal dosing amounts. So we've come a hugely long way.
Insulin pens were done back then and talked about connecting them it took, you know, it's only very recently that the pen came out. And that we're really going to be able to actually use pens in a larger system, again, connect them to CGM and whatnot. And the apps obviously, becoming incredibly long way they were pre primitive back in the day. And, you know, I like to say the biggest problem was that so much of the stuff was being designed by people who don't, you know, not only don't have diabetes, but don't have any patient experience at all, it was being designed, it was just engineering driven, or clinically driven. And it wasn't livable, and it didn't solve real world problems for people, any devices or apps that just add more burden, it's not going to be continued to be used. And it makes absolutely no sense. You know, no, no
Unknown Speaker 28:56
Stacey Simms 28:57
if you could look into your crystal ball for us just for the next year. Really, I know a lot of things were held up this year, because of COVID, things that we kind of expected in 2020 might be pushed to 2021. Or further, I won't hold you to it, we're not going to really make a bet on this. But I'd love to get your take on what you're looking forward to in 2021.
Amy Tenderich 29:16
Oh, thank you so much. So we were privileged to be able to host the first ever closed loop system showcase at our fall event last year. So the end of 2019, we had six of the companies that are like getting closest to having or already have a system out. And it was just amazing. You know, they came and they talked about the details of their algorithm and you know, how they, what the targets are set out and whether the settings are customizable. And then we had patients there who had used the systems either in the real world or in studies. And I just think that there's going to be so much continued improvement on these systems. One very encouraging thing is that the studies are no longer being done in some kind of clinical environment or they are doing real world studies where they literally go out Follow people while they actually go out and do sports and eat food and do things that real people do, you know, so I think it's hugely important for kind of the form factor and just to understand how they can improve on the kind of day to day living experience with these systems. So I'm super excited about that. I do think also that insulin pens, again, gone from just being another sort of thing that you use to stick the insulin in your skin to an actual tool that can help people figure out their dosing and help people keep track of their, you know, their whole diabetes management, regime, and, you know, be connected to, you know, your stream of glucose data, which helps you understand what's happening. So, you know, all of this stuff is just getting so much more real world usable. And I think that's really going to be kind of the linchpin going forward. And it's already hard now for family for people who are newly diagnosed now, to even understand how good they have it. Compared to what it was, like, you know, even when I was diagnosed in 2003, I mean, it was a world away. I mean, right?
Stacey Simms 31:06
What is the next event for DiabetesMine, I know, things are up in the air with COVID.
Amy Tenderich 31:11
You know, so our, you know, traditional pattern has been that we do the D-Data exchange twice a year, so, so again, traditionally, pre COVID, it was in June, on the Friday before the big at a conference, wherever that happens to be. So we've done it in New Orleans, in San Diego, and Boston, Orlando, all the places, right. And then in fall, we would do this two day event, which was always in Northern California, it was at Stanford School of Medicine for years. It's also been at UCSF School of Medicine for the last couple years. And that was the called the Innovation Summit day, which was kind of this broader look. So it didn't only have to be technology, it could be anything that was innovative, whether that's a community program, or whether we were talking about innovations in like coverage, or community events, whatever, and just a variety of different things about improving care. And then the D-Data exchange day, which was always the deep dive into technology. And that event kind of has a pattern to it. At least we've always done it so that we have a featured DIY talk. So we try to always get some interesting speaker from the DIY community to come and talk about something that they're working on. That's cutting edge and new. And whether it be about the community itself for about a particular tool, that we traditionally had FDA come and speak because it's like, let's hear from them. They're so important in all of this. And then we have this lineup of demos that we always do kind of cutting edge stuff. And that's been everything from as you mentioned, new CGM systems to like apps that motivate teenagers to I mean, we've in the past, we've even had some I don't know things for diabetes complications, like socks that can monitor your feet for neuropathy. But right now, it's it's been also a lot of AI, you know, machine learning driven platforms that are trying to help people better calculate their insulin doses are better predict what's going to happen when they eat certain things, or do certain activities, different ways to be able to kind of glean meaning out of your data. Generally, we do June and then we do like early November, it kind of dawned on me that if if Ada does not go back in person, this coming June, which they may not, then we don't necessarily need to be tied to that date anymore. I mean, the the idea originally was, you know, everyone's in town. And it started that very first year that we did the bigger D-Data it was ADA was in San Francisco, which is my hometown. So we're like, oh, everyone's gonna be here. So we'll just do this kind of afternoon thing before and get everyone together. And that's worked really well. Because physically, people are, you know, in from all over the world. But right now, everything's kind of footloose. Because of COVID.
Stacey Simms 33:44
well, thank you so much for coming on. And talking about all this and sharing these stories and for doing the conference and putting it all out there. And we'll link up as much as we can. If anybody missed it and wants to read all this stuff. It was really well covered on Twitter, I was following along the hashtag when I couldn't be there. And we'll get the word out. But he thank you so much for joining me.
Amy Tenderich 34:02
My pleasure. Thank you so much. And thank you for being part of it. And I hope you will join us again sometime.
Unknown Speaker 34:07
You got it.
Unknown Speaker 34:13
You're listening to diabetes connections with Stacey Sims.
Stacey Simms 34:19
More information about DiabetesMine the D-Data exchange. And that video we mentioned near the top of the interview the video about representation what people had to say, it's only five minutes, it's well worth your time. I'm gonna put it in the Facebook group and I will also link it up here in the show notes. Really interesting people definitely worth watching and worth possibly a follow if you're on Instagram or social media as well check them out. And I love talking to Amy because we always learn something new and see what new technology is coming. So of course more to come in the new year. Boy, I feel like there's a lot coming in 2021 that we've been waiting for. So I don't wanna get too off track or into the future but I'm excited and I'm Hoping to do an episode or two about a summary of what's coming. And I should also let you know I've also got interviews lined up with some of the people that are releasing really cool stuff coming up. We've got a lot to look forward to when it comes to technology in the new here,
okay, tell me something good in just a moment. And it's an embarrassing personal story, but I will share because we're friends here, but first diabetes Connections is brought to you by Gvoke HypoPen, and you know, almost everyone who takes insulin has experienced a low blood sugar, and that can be scary. A very low blood sugar. It's really scary. And that's where 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'm 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 comm slash risk.
Tell me something good. This week is about my family. We are celebrating a diaversary my son was diagnosed with type one, as I always say right before he turned two back in 2006. Which means as hard as it is for me to believe we are marking 14 years and that kid is going to be 16 pretty soon. So the story I want to tell you here for Tell me something good. And if you're a new listener, he is doing great. Maybe that's the good news story I should start off with he is happy he is healthy is independent. He drives me bonkers. I want him to do more in his care. I want him to change his sites on the spot every three days and pre bowl is 15 minutes. Every time he eats. He doesn't do that. But you know what he does so much. He's super responsible, as far as I'm concerned. And he is almost 16. So for where he is, and what I was told could happen during the teen years. I really keep my fingers crossed, I knock wood I'll swing a dead chicken if you make me. I mean, I really feel like we have a lot to be thankful for. So having said that, this is a story about how we did everything wrong.
14 years ago, let me set the table. When Benny was diagnosed, I have a daughter. She is three years older than him. So she was just five. their birthdays fall in such a way that she just turned five he was not yet to. And my brother in law. My husband's brother was living with us. It was a temporary situation. He was with us I want to say for about, I don't know, a year, year and a half. He was between jobs. We had two little kids. We both worked full time. He asked you know Hey, can I come stay with you for a little bit while I get things settled? And we said please come down and be like a nanny. We can't have you here fast enough. And it was amazing situation. It really was uncle David was just a godsend, great guy and, you know, left us and went back to a full time job and a great life and relationship in a situation where he now lives too far away. If you're listening, David, he's up in Pennsylvania.
But he was there when Benny was diagnosed, which made our lives kind of easier. He had another caretaker in the house when Slade and I took Benny right to the hospital on that Saturday morning. That first weekend in December December 2 I always have to look at the date December 2 2006. David stayed home with Lea until we were ready to trade off and have her come visit and that kind of stuff. And we all learned how to do things together. So we came home Three days later, we tried to go back with our lives. Haha, you know, we were all kind of in the thick of things. And that Saturday night, the following week, Slade and I had tickets to go see a show, you know, I'm a big Broadway fan, love that kind of stuff. And David said you should go I've got this. I know just as much as you guys do. And he really did. I'll watch the kids go and your phone call away. So the theater in Charlotte, you know, we have one of these regional theaters where the Broadway shows come traveling through. It's about 30 minutes from us. Yeah, you really put the pedal to the metal 25 but 30 to 35 minutes. So we thought okay, this is good. We're all our doctor says go on with your lives. We're going to go on with our lives. David's got this. The show was Spamalot. By the way. It was you know, very funny musical comedy. And we decided to go and enjoy ourselves. We got dressed up. We went not 20 minutes into the show, maybe 30 minutes of the show Slade's phone starts buzzing, and he gets up and leaves if you are familiar with the show, this is just after he is not dead yet. And the lady of the lakes. So I'm sitting there watching this very funny show, being amused being entertained. But my husband is no longer sitting next to me and I know something's up right. If he had come right back, it might have been something easy just to question, but he's not back. I think I made it about halfway through the song that goes like this. I remember seeing that which is the song that really just goes on and on. When that ended, because I wasn't gonna run out of the theater when someone was singing people applauded and I booked it out into the lobby.
And Slade was on the phone, pacing and talking and pacing and talking. Here's what had happened. David had given Benny an injection for dinner or snack, I don't even know whatever it was it gave me an injection. And remember, at this time, we're using a syringe and we're drawing up teeny, teeny tiny doses. He's getting like point two, five, maybe for 20 carbs, I think I mean, who remembers these doses, but they were minuscule. They didn't have half unit pens at the time. And they certainly didn't have quarter unit syringes. I don't think they have that. Anything like that now. So unless you're using diluted insulin, which nobody had mentioned to me during his whole toddlerhood, you know, you're really guessing at the dosage, and you're trying to eyeball these teeny, tiny poufs and wisps of insulin. So David had tried to draw up like half a unit, I don't remember the exact dose he was supposed to give was, but he gave him two full units, which was bigger than anything we had given before. It makes me laugh now because to like, it's like a speck of dust for him now, but two units
when you Wait, 27 pounds is a huge deal. So what David and Slade had already done while I was sitting there watching people singing, they had already called the endocrinologist. And they had actually already gotten a call back. And that's what the phone call and the pacing, that's what was going on. When I had walked out, he was on the phone with the doctor. And of course, they advised check the blood sugar, give more carbs if needed. You know, nobody was panicking. So we didn't panic. His blood sugar was fine. David had checked it before he called he checked it after the endocrinologist called back, he was fine. It gets a little weird, because the dose had been given Well, before the phone call. It was one of those situations where David did it. And then A while later thought, did I really do that? He absolutely swears that he gave the kid two units. But two hours later, his blood sugar hadn't dropped. So my suspicion at the time was you didn't give him two units, you probably drew it up and just misread the syringe, which was very easy to do at the time, especially when you're distracted by a toddler and a five year old or the child didn't go all the way in, or something really weird happened because his blood sugar stayed steady. You know, we were checking with a meter. We did have a dexcom at the time. But he was checking him every half an hour. We left the theater, we went home. We didn't want him to have to handle this by himself. And how are we going to enjoy Spamalot, right?
Stacey Simms 41:54
We're worried about Benny. We're now home, probably close to three hours after the dose is given. His blood sugar was steady. We called the endocrinologist back and they said look, it's three hours pass the dose. If he hasn't dropped, he's not going to drop you guys are okay. So we being the terrible parents that we are looked at each other and said, you know, our friend was having a holiday party that we couldn't go to because we had tickets to Spamalot. David, do you mind if we go to the party now? I swear we did. We left we went to my friend's party. And my friend is only 10, 15 minutes away from my house. And it was what 10 o'clock at night already. So we only went out for about an hour and a half. But yes, I left my sleeping baby and he never woke up. And he never even woke up with all those pokes all those finger sticks to check his blood sugar, which I'm sure David did 10 more times before midnight, he slept through the whole thing. We were all worried but not worried enough not to go to that party.
Ah, I am the worst. We have always been the worst. But you know what he was safe. And our endocrinologist gave us the correct information told us what to look for helped us through it. And there was no sense as we saw it, not going to the party. So I know I'm a terrible parent. That's why I always say I'm the world's worst diabetes Mom, I still have not seen Spamalot all the way through. So maybe when it comes back through shark, I'll go back and make it through the first half of the first act. Oh my goodness. And hey, anybody dealing with a toddler or baby with type one, and those teeny tiny doses, I salute you. It's not easy. Getting an insulin pump makes it a little bit easier. But anything under the age of five is a circus of you know, type one is never easy no matter what age you are. But we're heading into 16 year old with it. And that means driving, which is an adventure for another time.
Before I let you go quick reminder friends for life is this weekend, the virtual conference. And if you were able to attend in July, you know that did an amazing job. If you were there, the one thing I will say that surprised me in a very good way was how much just schmoozing. We were able to do. They had specific zoom rooms for different ages, you know, parents and teens and young adults with type one, it was great. And I really wish I had put aside more time in July to attend the conference. Because I didn't really understand how much just hanging out and socializing we'd be able to do. So I'm putting more time aside to attend this one. And I hope you can check it out as well again, link in the show notes.
Hey, in the weeks to come, we're gonna have a couple of more episodes in December probably take one off the week of Christmas, even though I celebrate Hanukkah, but you know, we go with the flow. And I also want to just point out that this time of year, there are often a lot of approvals. It just seems like that last week in December, there's usually a lot of news. So stay tuned. I know a lot of delays happened because of COVID. So, you know, I'm not even sure what's been submitted to the FDA that was planned for this year. A lot of delays that way, but we will definitely be talking about it. Make sure you follow on social media for the latest and greatest. And thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much as you listen and if you've listened this long, I really appreciate it got a little chatty this week with that story about Benny and Uncle Dave. But But I appreciate you listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.
Unknown Speaker 45:10
Diabetes Connections is a production of Stacey Simms media, all rights reserved. All wrongs avenged.
Clinical trials are incredibly important for research, but the people who take part don't usually get to meet anyone they've helped. Marty & Alecia are a very special exception!
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Wesner’s eyesight! We’ll share their remarkable story and talk about how much progress has been made in treating diabetes eye issues.
Join the Diabetes Connections Facebook Group!
In Innovations this week.. a new partnership in the closed loop space. We'll talk about Lilly and Ypsomed
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.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, taking part in a clinical trial is incredibly important, but it's often thankless you don't expect to meet the people you might help years later. That's why it was remarkable when Alecia met Marty,
Alecia Wesner 0:40
the people who tested that technology, I'll never meet them and tell them but you know, you're some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn't or they lost their life
Marty Drilling 0:56
while she was moved because I was still alive and she'd been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated.
Stacey Simms 1:06
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues.
In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market.
Welcome to another week of the show. I am so glad to have you along. If you're listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It's also a really great Thanksgiving story, because it's just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story.
So I'm really glad you're here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action.
Quick reminder, my book, the world's worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you're buying it for. You know, make sure if you're getting it for your mom, or your wife, that you let them know that you don't think they're the worst that It's me who's the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There's also a tiny little shop button at the very top, but the promo code is “November.” And that'll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can't sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook,
okay to Marty and Alecia in just a moment. But first diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime instantly share blood glucose reports with your health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip subscription plans pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.
My guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said.
“Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.”
I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don't know about you, I'm really squeamish. Even though I've had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn't scare you.
Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much.
Marty Drilling 5:54
You're more than welcome.
Alecia Wesner 5:55
Thank you for having us.
Stacey Simms 5:56
I admit, I don't know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we'll get to that we'll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don't mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed?
Alecia Wesner 6:20
I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I'm very active with JDRF. I'm a JDRF rider. And I've written many, many miles on a bike.
Stacey Simms 6:44
And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What's your story?
Marty Drilling 6:49
Well, I was four and a half when I was diagnosed in 1953. So I've been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you've got you're going to go blind if you don't do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too.
And then Alecia, pick up the story from there because it was pretty amazing.
Alecia Wesner 8:03
Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we're like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty's destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn't asked Marty was more of his diabetes story. So we were at Elizabeth Warren's office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I'm sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that's why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying.
I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I'd seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn't really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I'll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I've always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there's no more important moment to me than this moment. So yeah, so that is how we are friends. So I'm sorry, Marty. Your version of this story,
Stacey Simms 10:55
I'm upset with both of you now. Because I think I have cried twice on this podcast in five years.
And you've, you've just done it again. And it takes a lot. But I think because and I'm not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I've worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I'm with you, Alecia, I think all the time about the people that have done so much to make my son's life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let's swing over to you. And don't brush it off. I know you're gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction,
Marty Drilling 11:47
as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I'm still I was still alive. And she'd been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated.
Stacey Simms 12:34
So if you don't mind, let me ask some details. And I always say look, if this gets too personal, you know, we'll move on. But I'm very curious if you don't mind, Alecia, what happens? So when you're treated like this? Does it go away after a while and you're fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through?
Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap, you push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do.
Alecia Wesner 13:51
Yeah, absolutely. Well, I know that my situation is could be different than somebody else's. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I'm certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty's of the world specifically Marty and also really, really great doctors. My vision is fine now I'm 47 years old. So I wear glasses because I'm old not because I because of anything diabetes related. I will say so so you're both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that's what he says, Every time I see him, that's a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it's lasers treating my eyes. It's always been interesting to me. So I asked a lot of questions at the doctor's office, and I, I get a copy of all of my scans, because I'd like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it's definitely distorted. But my eyes compensate for that together.
Stacey Simms 15:43
Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then?
Marty Drilling 16:05
Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn't have a snack in the afternoon. But if I don't give it to him, he's going to pass out. And my mother often says that one of the once you would call the doctor's office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it's appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I'd have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don't forget, we didn't have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar's were higher than but I could do a lot more exercise then because my blood sugar's didn't plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn't doing well and what helped me out, but it's
Stacey Simms 18:23
interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren't living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing.
Marty Drilling 18:41
It's not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something.
Stacey Simms 19:01
So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like?
Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don't want to hear any details of any eye surgery. I'm sorry, but to have to skip ahead about eight minutes when we switch to talking about Alecia's experience with artificial pancreas trials. But truly, two and a half to three minutes will take you through what I would consider the most sensitive stuff that's happening in this interview. The rest of it just makes reference to eye surgery and some procedures without anything that I would consider really sensitive. Okay, fair warning back to Marty.
Marty Drilling 19:50
Sure. first trial was in my left eye, and I think I told him we should this story but but when I went in there, it's like a Frankenstein movie because it was a very sparse room. It was just the Doctor coverall and his secretary and they put you either lie down on this metal table. And then he'd approach with the head to anesthetize my eye. And this is very primitive, as you can well imagine. And so he was approached with a needle that I thought was about 10 feet one to, you know, stabilized and anesthetize the eye so it wouldn't move. And then back then they had a huge light to make sure he could see where it was going. And he told me, we had the same brightness, as the lights, they used to light up the ocean when the astronauts were landing it at night, and then they just started zapping away. And that had to do that for three days in a row. And he said, You have to be very careful, you don't want to jostle your I, like put books under the top, where my head was under the bed, make sure my head wall was stayed above my heart. So after three days with the left guy, they, I would call back and see them, I think I was going back like every three months or so, it was a long time ago. And I don't always remember all the details. I had laser surgeries, I don't know how I lost track of the number of times I got zapped in both eyes. As the years went on, the improvements in the treatment went on. And so by the time the West laser treatment had, I had a I just had to put my eye up to the machine, resting my chin on the little bar there. And they could zap it right from there as opposed to having to any or they just would put drops in the eyes. So in terms of pain, it was much less painful and much less cumbersome.
Stacey Simms 21:49
Do you remember about when the last treatment was? I mean, are we talking a year later? 10 years later? I'm just trying to get a sense of that.
Marty Drilling 21:55
Yeah, it was well into the 80s. Because Don't forget I had, they had to make sure it worked in the left guy. And then I needed in my right eye as well. So yeah, I was, I see ABS would have been, I'm sure it was a waste into the 80s could have been in early 90s. And then I but I haven't had treatment for a while. I've had a couple of vitrectomy surgery because my vitreous was wrinkled in one eye. And but similar to what uh, we should just saw the last time I've been in with a number of years I've been in to see the doctor, they're very happy that it's stable. They have some issues with my right eye, which is my good eye. But they said it's stable, so we can just keep doing what you're doing. That's great. So how do you is?
Stacey Simms 22:42
I bet so how do you if you don't mind? Again, this is a little personal. But how is your day to day vision? I mean, we're all wearing reading glasses, as we just said, you know, that kind of stuff? You know? All right, exactly. No doubt. But how is that for you, Marty?
Marty Drilling 22:58
While my vision I can see, which is 90% of the battle. I try not to drive at night, because I have low vision impact. And the it's very difficult to see street read street signs and the lightbulbs get become stars as opposed to circular. So but other than that, I don't have any restrictions and reading once in a while I'll get a floaty but it has not impacted my quality of life to any significant degree. And since I enjoy walking, I don't mind walking around in to various restaurants or whatever that are nearby. Alecia, let
Stacey Simms 23:42
me ask you, people, including me, are a little squeamish. And I've had eye surgery and I've had eye issues. You know, I don't have diabetes, but I've had other issues. And it is one of the things that I think makes many of us very nervous to the point that I would be concerned that some people with diabetes or any condition would be scared enough not to want to seek treatment. Can you talk a little bit? I mean, look, you've already mentioned you've got like eyeball pictures in your office. So I'm not sure you're the best person to ask. Can you perhaps ease some fears about getting treatment for retinopathy?
Alecia Wesner 24:16
Well, I do think one thing that I should have made clear earlier, is that treatments have really changed since certainly since Marty had laser treatments and that I have had laser treatments. I mean, you know it from the diabetes perspective. Although lasers still one of the treatments, there are more options than there used to be. And I know for me, I think I'm pretty selective about my doctors. I've taken years to build up, like my dream team. I really like my doctor, I admire him, he saved my vision. So I think that helps a little bit to but also I think that you know these appointments, it's not like you're there for a month. It's one appointment, you do it once a year and then if you have a problem, you know Make your decisions on how you want to be treated. But the actual laser part of it, the types of things that I was having done, it's more the waiting, that is the harder part than the actual treatment, you know, you're, you have to keep your head still and your eyes being held open. And I guess for somebody who's like squeamish about their eyes, that might sound kind of freaky. But I would think you'd rather have your eye held open, then you'd be trying to do it yourself. So you know, it's just a matter of staying to bill. And I don't know if I will ever be good at meditating.
But I think the focusing on other aspects of life for something like that, I mean, it's no different than any other part of diabetes care, you know, some of it flat out sucks, but you know, that these are the steps that you take for, for your life to go on. And certainly for me with my eyes, you know, I'm looking at a picture of my office right now with my eye and, and it looks like all little dots all over the inside of my eye, and that is scar tissue from where they cauterize the vessels. And that is not what a normal eye looks like. And that is the inside of my eye. But when I look at that, I didn't feel anything during that, like it, there's no physical pain, it's just the discomfort of things still, and a bright light being in your eye for a little bit of time. So I think in like the scheme of, of like, physical pain of things that you're treated for, certainly, as somebody who's broken quite a few bones, like a broken bone is 1000 times worse than having your eyes treated. But I think the stress of the anticipation of having a problem is really the hardest part.
Marty Drilling 26:38
If anybody is concerned today about getting treatment for their eyes, the progress that has been made makes it a totally different experience from what we experienced and what I experienced. And they don't even use laser treatments as their primary choice for treatment of anybody with the retinopathy. So they shouldn't be squeamish. It sure beats the alternative of not being able to see
Stacey Simms 27:05
Alecia, I've got to ask you, because you know, you've been through these clinical trials, and my son uses control IQ. I'm curious, what led you to that? And when did you jump in? Was it back with type zero years ago?
Alecia Wesner 27:17
Yeah. Well, this is this is a crazy story. So I live in New York City. And I was at a JDRF board meeting, and Todd Brobson spoke, and he had been in a lot of the very early closed loop clinical trials at UVA. And at the end of his speaking, I asked to take a picture with him and hug him. And I don't know that he was totally comfortable with that. But I'm aggressive. But I felt so passionate about what he was doing. And that, how could I do something like that? And then, you know, you worry, because you've had diabetes for so long that you won't qualify, you know, like, Am I almost like too broken to participate in these things. So I got on the list at UVA, along with a very good friend of mine. And over about a year and a half, there were a couple times where they were going to bring us in and you know, we got our physicals and all of those things. And then we both got an email saying, We've good news and bad news. The good news is the trial we were going to use you for has made enough progress, that we don't need you anymore, which you know, if you think you're going to be in a trial, that's a real bummer. Especially because you're trying to coordinate how you're going to get to UVA and like take time off work and all this other stuff. But the good news was that the next phase of trials now is going to go out to other research institutions. And one of them was Mount Sinai in New York, I got this email as I was sitting for my regular three month checkup with my endocrinologist and Dr. Cara levy. And she was the doctor who was going to be overseeing the trial.
She walked into the room, I said, you're never going to believe this. And she said, I already know your file as somebody who maybe could be in this trial. So that's how it all started for me. But I think for me, at a certain point in my life, my life view is that this life is really a gift, and that I am lucky to be here, and that I have lived on borrowed time since I was six years old. So I think I had gotten to a point where you know, I can do fundraising, I can do walks and I can do rides and everything else. But what is the next level for me of how you know, my life, and this body can make an impact and I thought being in a clinical trial so you know, some of the trials have been much more challenging than others. One of them was actually up at Joslin and I wish I had known Marty then because I then walked around Joslin, after everything and there they had done a lot of eye scans, and they have the original equipment for treating eye treatments in the lobby at Joslin and to me that hit me hard because you know your life is like Not a straight line and not a normal path that you plan. But that was a real moment. This friendship that I have with Marty is, you know, we were laughing about the fact that it's been a year. But Marty and I talk all the time. And it's such a crybaby mess. And I've only had like two cups of coffee, like usually this is like a drink.
Stacey Simms 30:28
But we understand why,
Alecia Wesner 30:30
you know, I just, I just feel really lucky. And, and I am glad for that. And it is just, it is such a pleasure to know somebody who has, you know, it's like Marty, I, there were no blood meters when I was a kid, it was testing your urine. And the technology has changed so much. I mean, carb counting didn't exist. But I I look at that. And it's, it's such a special thing to have this bond with somebody else. And that they they really did have an impact on your life.
Stacey Simms 31:01
Marty, have you been back to Jocelyn? Have you seen that in the lobby?
Marty Drilling 31:05
Oh, yeah, absolutely. stone in the base of my unit. It's prominently displayed there in the lobby, the corner of the waiting room. I have seen it then that like a we should meet makes a big difference. Joslin does a great job of maintaining the history of the development so that we can all appreciate this how far we've come, we're not, we don't have a cure. But most diseases, you never get a cure. But certainly with the improvements made with them, the pump and carb counting, we have a lot of instant information to help you make a best decision you can based on what the facts are at the time, knowing full well that what may work five days in a row, which isn't going to work six days, six, seven or eight. But but that's just the reality of the situation. And was it wasn't cool, we should he's right is I think we have a unique bond just because we have so many shared experiences, and have the same approaches is take advantage of each day and your torture.
Stacey Simms 32:10
Before I let you go. I'm curious. Marty, one more question about you know, your story here. They told you it sounds like one of the reasons you did the clinical trial in the first place was because they said, you know, it's 1974 you're probably going to go blind if you don't do this. And I'm curious, you know, looking back at that, what's that, like to hear those words, I talked to a lot of people who are diagnosed, you know, before, I mean, I'll just put down 2000 as a casual marker, I'm kind of making that up. But I know people who were diagnosed in the 1990s, who were told they wouldn't live to be 30 years old. You know, it's got to be devastating to hear that. And I don't know how somebody hears that and says, forget you, I'm gonna fight I'm gonna do what I need to do to make it. I'm just curious, you know, when you hear words like that, how do you keep going?
Marty Drilling 32:54
From my point of view, I said, I'm going to make the most of each day if that's what's going to happen, you certainly don't have an alternative because there's only a Joslin said, if you will have a comply with the rules and you know, live a good life in terms of diabetes care, you can survive, and if you don't, you're gonna die a quick and very painful death. So that was the impression. But no, you're talking about those that were diagnosed in the 90s. Back in, in the 50s. My mother, I was four and a half. And my parents were told, he's not going to make it to its 11th birthday. So I go leash everyday is against, I just figured I'm going to get the most out of life while I have it in this 70s. every October, the New York Times would run a full page article. And now all the deleterious side effects of diabetes long term complications. So I figured if I survive to the age of 40, I'm going to not have any legs or be blind. So that certainly impacted I'm sure on some of the nights when I decided I was going off this strict regimen. But all in all, I just said, I sort of figured if I can defy science, and that's alright in my own book. And so I just kept wanting to prove people wrong, but it didn't it impacts how you think about life. Certainly, I didn't do some things like I never took up skiing for an example. And we should can because I was told by ice wood, all the jolting and going down the ski slope would cause the my eyes to hemorrhage. So there are sacrifices you make, but I just never let it stop me from getting out of bed in the morning and doing something positive.
Stacey Simms 34:50
And now Alecia, I'll ask you to you know, it is remarkable to meet someone like Marty, who as you said for years you wanted to thank the people that had done these clinical trials, what is it like now knowing that you are that person? for other people, there is somebody who is into the 21, who is thanking you, who may never meet you for doing these clinical trials and everything you have done.
Alecia Wesner 35:14
Yeah, that part's a little weird. So because Marty actually asked me this one time, about how I see him, that other people will see me like that. And I really poopoo the whole thing. But there is a sense of responsibilities. Like when you're in these trials, you're following a lot of rules. And I think the reason that I kept kind of working my way up the chain of clinical trials, as far as AP step one was because at the beginning, they want to make sure you're, you know, you're on a tight schedule, and you're writing everything down. And you know, it's a huge time commitment. So I think I've taken the responsibility of being in trials very seriously because I, I want these technologies to work. But I think for me, you know, I, and Stacy, you're a mom to somebody with Type One Diabetes, I think that a lot of credit goes to my parents, my parents, when I was diagnosed, the doctor said, She's a child first and a diabetic second. And that really, they took that to heart. And I played sports, I didn't want to play like sports, I hated. My parents made me play, because I was going to show the world that I could do this, but also because I was supposed to be getting exercise.
And like I went to sleep overs as kids. I did not like in my class, because my mom thought if this person will you know, when I was diagnosed, the concern in the neighborhood was that I was contagious. Right? Right. It must have been Oh, yeah. And, you know, all of a sudden, like, I went from having friends too. And, you know, this is long before the internet and sold. But, you know, somebody invited me to sleep over and I thought this girl was a bully. And my mom said, You're going there. And I was like, Please don't make me go, please. Go and, and, you know, and I ended up going to sleep over because her mom really wanted to put it out there. But it was okay to have me sleep over. And I looked back at, you know, my parents pushed me so much. And I guess there's like a negative to that too. But I think in the end, like, you know, I went to college, and I knew somebody else with type one who went to a local school because their parents didn't want her. They thought it was too much of a risk to move away. And Stacey, as you pointed out, we both went to Syracuse. And Syracuse was, you know, a whole different world than what I had come from. But I think those things, and I do think that's part of the bond that I have with Marty beyond like I was to have these clinical trials, we don't have diabetes and stuff like that. It's that I think we both have a very similar approach to life, which is go out there and do it. You know, and that doesn't just relate to diabetes. That's life.
Stacey Simms 37:45
I love it. Well, it has just been remarkable to listen to both of you. I hope I've done your stories justice here. I'm still kind of teary and I'm not happy about that.
Alecia Wesner 37:59
Marty just had his wedding anniversary this summer. And I spent the day with him.
Stacey Simms 38:05
Oh, Marty, how long have you been married? Tell us about tell us what your wife.
Marty Drilling 38:08
My wife is a saint. We've been married 47 years, have two kids and five beautiful grandchildren. And I tell people all the time that without her I don't think I'd still be here because she has accepted the burden of living with a type one diabetic and does what she knows has to be done. Even if I'm having my low when I get nasty. She put tolerate it and then I pay for it later. But I get out of that immediate situation. And so yes, Maureen has been a godsend to that. She after we got married, she actually went to nursing school, too, because that would give her more flexibility in working with the kids. But it also has been a huge benefit for my day to day existence in our day to day life together.
Unknown Speaker 38:58
Stacey Simms 38:58
Alecia, thank you so much for joining me for sharing your stories. And I really hope you come back. Let's check in again, maybe you know next year and see what everybody's doing. But thank you so much for joining me.
Marty Drilling 39:09
Well, thanks for the invite and great, great talking to you and Alecia.
Unknown Speaker 39:15
Unknown Speaker 39:21
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 39:27
Lots more information on what you need to know about taking care of your eyes. We will link up more information about some of these clinical trials. I just found this story to be fascinating. You can go to Diabetes connections.com click on the episode homepage as always for the links in the info and the transcript. I so enjoyed this interview. I think you could probably tell as I said, I don't get too emotional about this stuff anymore. But every once in a while it sneaks up on you and boy, I mean you can't even hear it really during the interview. I cried so much more. It's a complete mess and it was one of the things Few days, I forgot what I was doing that day. But I'd actually put on makeup. I had something else where I had to be on camera, and I was a complete mess. If I haven't cried off my mascara in a very long time, thanks to all this working from home. Hopefully we'll follow up with Marty and Alecia, I really think they'd be fun to check back in with.
Okay, up next we're going to talk innovations, a new team is announced for the United States pump market. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you know, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it now about once a week. I probably check it a little bit less than that these days. But it really helps Benny and me dial back and see longer term trends and help us you know, not overcorrect to what just happened for one day or even one hour. The overlay reports help the context of these glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo.
As I am taping this episode, it has just been announced. And I mean like an hour ago that Eli Lilly and Yep, so med have entered into an agreement to quote advance an automated insulin delivery system, they are getting into the hybrid closed loop market. There is going to be a lot more information forthcoming. I have already contacted these folks to see if they'll come on. I definitely want to talk to Lily I really want to talk to Yep, so mid I hope I'm saying that right. This is a European pump company that has been out bro, I'd say since the mid 2000s, probably since 2016. I know a couple people who use it who are very happy with it. It hasn't come to the United States yet, but really plans to bring it here, they will probably submit in 2022. If all goes well, so who knows if it'll be early or later when that will actually come out. But here's what's interesting to me. And again, we're getting a lot more details in podcasting is not the best way to get breaking news. So I will be putting more out on social media.
But here's my very quick take about two two and a half years ago in May of 2018. A bunch of bloggers and I guess influencers were invited to Lilly's headquarters in Cambridge in Massachusetts, as Lily had this connected diabetes solutions system that they started talking about, and apparently or supposedly wanted blogger input. So we all went and we were shown an early prototype of what was supposed to become Lilly's pump. And I assume now that they are not going to use what we saw, which was a little disc it was a little bit smaller than I think at the time, people compared it to like a little round box of shoe polish or tobacco chew, you know, that kind of stuff. It was about the size of a small coaster, it was less than an inch high, it was very sleek and tiny. It was connected to the body by a little tube. So you could make the tube longer or you make the tube shorter. The idea was that you were close to the body, kind of like what we've seen of the upcoming and expected tandem tee sport where it has a tube but it is supposed to be placed very close or on the body like an omni pod. And you could hear us talk about Lily's connected diabetes solution as they call it in a past episode, I will link that up. It also features pens, and it is at least at the time we were shown it would be using the dexcom CGM. I don't see an announcement of that. I don't see a CGM announced with this. But of course, they'll have to be one, the assumption would be that it is Dexcom since Lilly has an agreement with them.
But what's troubling and I guess that's a strong word to use, but I'll use it. what's troubling about this is that this pump will use prefilled insulin cartridges for Lilly's rapid acting insulins. So it is a proprietary insulin system. I don't think there's any other pump on the market that only uses one kind or one brand of insulin. And my guess is they will make sure that by making the cartridges, a special shape or some kind of patent so that if you want to use a novo insulin in it, you can't. I don't know for sure. We haven't seen that the DIY community is fabulous at this and if it can be done, I know they will get it done. But I find that troubling when we voiced that in 2018, we asked about using only Lilly's insulin in their pump and how troubling that would be. And at the time reading between the lines, my takeaway was Lilly feels the insulin makers all feel that the Ryan's gonna be over soon, states are getting into the action, they're cracking down on price. There are going to be reforms whether they're on the federal level or not, and they're not gonna be able to charge what they have been for insolent and they need to find a way to continue to make the outrageous sums of money that they are making. I know it's not very nice of me to say but you And how I feel about this. So I think proprietary pumps are one way that they may try to do that. I of course will give Lilly a chance to respond, as I said have already reached out to them and to give some meds so hopefully they will come on the show and tell us more competition in the pump market is a great thing, but not if that's at the expense of competition, little as it is in the insulin market.
We’re in the homestretch of 2020 and like a lot of you this year cannot end soon enough for me However, there's still some good stuff to come we will look at the bright side as much as we can and friends for life is coming up. They are doing a wonderful virtual winter conference. I will link some information in the show notes as well. We are doing our game show Wait, wait, don't poke me which is one of my favorites. And we had a great time doing this. I love writing all the nonsense that goes into the show. If you haven't listened to it or seen it in the past is a take off of NPRs Wait, wait, don't tell me. If you haven't heard that show. I highly recommend you listen to it. It's just a fun trivia news and nonsense. There's limericks. It's really a fun game show. Doing these game shows without an audience is very difficult. My panelists were ready in game and up for anything and they did a great job. I might have to put a left track in as I edit it, we shall see. But I hope if you're going to friends for life, virtually that you stop by watch the game show and take part we have some fun interaction. Last time we did this over the summer I created a bingo game where you could play along from home. I think we'll do that again.
And then we are just looking forward to 2021 I have lots of fun stuff in store for the podcast as usual. I always want to hear from you. Let me know what you think what you like to hear what you don't like to hear. I take it all to heart and do the best that we can. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Alisa Weilerstein has been living with type 1 diabetes almost as long as she’s been making music. She debuted with the Cleveland Orchestra at age 13, played Carnegie Hall at 15, performed at the White House at 27, and at 29 was awarded the MacArthur Foundation “genius grant” fellowship. She was diagnosed with type 1 diabetes at age 9 and her first concern, of course, was for her fingertips! Alisa speaks to us from Berlin, where she and her family spend half their time.
In Tell Me Something Good we share stories about girl scouts stepping up and hearing a Dexcom alarm at the Supreme Court.
Alisa mentions playing in concert while pregnant. See that video here
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Episode Transcription (rough transcription, not yet corrected)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, she was playing the cello before she went to kindergarten. In fact, when Alisa Weilerstein was diagnosed with type one at age nine, her first thought was her fingertips.
Alisa Weilerstein 0:41
I was already quite curious about the cello and the left hand, of course, it's the hand that goes on the fingerboard. And I remember saying to my doctor, I'm not going to click my fingers on my left hand, they won't be able to play.
Stacey Simms 0:50
She was certainly able to keep playing - Carnegie Hall at 15, the White House at 27 and at 29 Weilestein was awarded the MacArthur Foundation Genius Grant fellowship. She has quite a story. It was great to talk to her
and tell me something good girl scouts stepping up. And did you hear the Dexcom at the supreme court hearings?
Welcome to another week of Diabetes Connections. I'm so glad to have you along. I am your host Stacey Simms, and we aim to educate and inspire by sharing stories of connection. If you are new to the show, I am so glad to have you here a little bit about me. My son was diagnosed with type one right before he turned two he is almost 16 now so it's been a minute, my husband lives with type two. I don't have diabetes, but I have a background in broadcasting and local radio and television. And that is how you get the podcast. I am always amazed when I meet and talk to people with incredible musical talent like our guest this week. To me playing music reading music, expressing yourself through music is like another language. I appreciate music. But I don't have that kind of innate understanding that a true artist has my old radio show co host when I did mornings in Charlotte, North Carolina, where I am now for more than 10 years. And he was also a musician. And they just have this natural ability. I mean a true musician who can write music and read music and play and play by ear. To me it really is something special. And I hope I did this interview with Alisa justice. Because of course we're interested in talking about diabetes, but we talked about music as well.
I also want to let you know, we are not out of November yet diabetes Awareness Month of course, we'll be doing some fun things on social media. I have a big sale going on for the world's first diabetes mom real life stories of raising a child with type 1 diabetes, it is on sale right now use the coupon code November, you've got to use it on my website at Diabetes connections.com. I can't do coupon codes on Amazon sorry. But this covers more than free shipping and everything else. So it's still a nice discount if we're doing $4 off for the rest of the month. So go to the website, scroll down, you'll see the book in the middle of the page there under the most recent podcast episodes. And to use the promo code, you're going to click order a signed copy. The other links take you to Amazon and you can't use a coupon code there. But if you click on order a signed copy, it'll take you to the right place. There's also a little teeny tab on top that says shop.
It's hard for me to believe the book has been out for a year. I hope you're not tired of me talking about it. I got one nasty email this year I will share. Somebody stopped listening to the show two weeks after I published the book because he was tired of me talking about it. I felt like saying to him, you write a book, see if you want to talk about it! (laughs) But I appreciate you you know putting up with it. Especially this year when the whole book tour was canceled. I was supposed to like many of you, right? We were supposed to travel and go places and do things so you know I get it. Of course everybody's in the same boat. But I am going to continue to talk about the world's worst diabetes mom because man it was so much fun to put together and I'm not ashamed to say the response has been fantastic. So if you want to get a copy promo code November at Diabetes connections.com
Diabetes Connections is brought to you by One Drop and getting diabetes supplies because a big pain you know that not only the ordering and the picking up but the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lifts with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo.
My guest this week has been living with type one almost as long as she's been making music. Alisa Weilerstein has a remarkable story she debuted with the Cleveland Symphony At age 13, played Carnegie Hall at 15, performed at the White House at 27. And then she was awarded the MacArthur Foundation Genius Grant fellowship when she was 29 years old. I found her Tiny Desk concert. If you're familiar with those from NPR, that was 10 years ago, I will link that up as well. She is currently in Europe where she and her family live for half the year. I spoke to her. It was back in September when she her husband and their four year old daughter had just traveled back to Berlin from San Diego. Elisa, thank you so much for joining me, it's so interesting to talk to you that you're in Europe, we've got a little bit of a lag here on the call. But thanks for coming in. I
Alisa Weilerstein 5:37
appreciate it. Oh, you're so welcome. Thank you for having me on your show.
Stacey Simms 5:40
Before we jump in and talk diabetes and music. Tell me a little bit about living in Berlin. You live there half the time now?
Alisa Weilerstein 5:47
Yes. Well, I mean, I'm a I'm a cellist I played classical music. Of course, in normal times, I play about 120 concerts per year. And they're split between Europe and North America with an occasional trip to Asia. Of course, during the pandemic, that's been radically changed, obviously. But that's my schedule during normal times. And so it was very important for both me and my husband, my husband, as a conductor, to have a base in Europe as well, so that we're not just constantly on transatlantic flights, more than we actually need to be. So we have a base in Europe, which is Berlin, and it's such a great Center for the Arts. And our daughter loves it here. Our daughter was actually born here four and a half years ago. And yes, that's one reason why we chose Berlin.
Stacey Simms 6:27
I'm curious what the flight was like, and what the experiences like traveling from the US right now, with everything that's going on?
Alisa Weilerstein 6:33
Well, it's interesting, because then we spent most of the pandemic in San Diego. So we were there from March 13. Basically, you know, that that the day that all of the all of the borders shot, and I actually traveled to Germany in June, to play a live broadcast in Hamburg. At that time, it was a two week quarantine in Germany. And so I can't even hear it here in my apartment in Berlin. And at that time, it was even more sort of wacky to travel at that point than it was a week ago, when we flew back here to San Diego with my whole family. At that time. I mean, there were there were so few flights, and there was practically no one in the airports. So I flew from LA to Newark, of course, you know, you don't take your mask off your face, obviously. And even though there were like 10 people on my site, and not more than that, and then I had 10 hours in Newark, and then I suppose from Newark to Frankfurt, and I got a test immediately upon arrival, they were even doing testing at the airport at that time. And then my results arrived within 48 hours. You know, I tested for the for the virus and also for the antibodies, which unfortunately, I didn't have the antibody, I was actually disappointed. But anyway, I flew back to San Diego to rejoin my family. And then my whole family to my husband, my daughter and and also our daughters many. We flew back to Berlin. Again, it was a very few flights to San Diego, Chicago, Chicago, London, London, Berlin with a four and a half year old, you can imagine what oh, my gosh. But, you know, we tested right before literally before he went to the airport, we went to a lab to test and then we got tested at the airport and in Berlin Tegel airport there. They're doing testing upon arrival. And those results came within 24 hours. And potential street for me got here. So my girl was able to go to school right away here, which made her very, very happy. Great. Yeah,
Stacey Simms 8:18
yeah, I'm glad. I'm sure you're all glad to be settled.
Unknown Speaker 8:21
Stacey Simms 8:24
So let's talk about type one. You were diagnosed at nine. Do you remember your diagnosis story?
Alisa Weilerstein 8:30
Oh, yeah. Very well. Yeah, it was actually the month before my 10th birthday was March first 1992. And as you remember that, of course, like 92 was a kind of critical year in diabetes research, which definitively proved that tight control could ward off the risk of complications by you know, whopping percentage, and they are 66% less likely to get complications if the agency was 7% or below. So that was encouraging. But yeah, my diagnosis story was essentially, for the couple of months leading up to my doctor's visit, I exhibited the classic symptoms, I was urinating frequently with who had extreme thirst, and I was losing some weight. And I've always been a kind of muscular body type. And I suddenly became, you know, sort of like belly dancer and not like my energy was okay. And was was actually sort of normal until like, about a, I remember, like, a few days before I went to the doctor, and I was just feeling just sort of tired, which was very unlike me. And my mother took me to the pediatrician. She said, you know, maybe you have a bladder infection because I was, you know, going to the bathroom every hour or something like that. So I remember we got a urine sample from home, which the doctor had asked us to do that. And so you know, I peed into a jar basically. And then we went to the pediatrician and, sorry
Stacey Simms 9:52
It's a type one diabetes all the time.
Alisa Weilerstein 9:58
The diabetes podcast, so I'm your listeners are familiar with this. And anyway, I am submitted the sample. And then I remember the doctor who might like very much, I actually took my mother aside, and there was some whispering, which I didn't know about. And my mom looked very serious. And she said to me, Well, the doctor thinks the jar was contaminated. So just give her another example. And so I went to the Darrell bathrooms and gave her a sample from the sterile cup. And unfortunately, the result was the same, which of course, showed sky high glucose. And the doctor said, Well, you know, you need to go straight to the ER, and doctor told me, so do you need to get a blood test? And so I thought, Oh, my, you know, I don't really like and then I remember asking my mother, I said, well, Can I at least get some m&ms afterwards. And my poor mother, she, I mean, she didn't know much about diabetes, but she heard that word diabetes mentioned. And she knew that that meant a sugar issue. And so she just kind of looked at me and she opened her mouth, and she closed it again. And ah, and, you know, we drove to the hospital. And then the rest was really kind of blur. My father, you know, I remember my mom calling my father saying you need to get here now. And my, my little brother at the time was four. And I remember them all kind of standing around me and I was getting weighed. And then suddenly, I was like, on a gurney with IVs, and needles sticking in and out. And then doctors coming in saying, Yes, we think it's juvenile diabetes. And of course, you know, somebody was in examining my tongue to see how to hide it. And I might I, I might have been, and it was very kind of dramatic. My blood sugar was 464. At the time, they said that actually, we caught it relatively early. If you can believe that. I think at that time, some kids were coming in already, you know, the 800, or something like that, coming into with, you know, really, rather advanced ketoacidosis. And I wasn't there yet, I was throwing some ketones. It wasn't yet in kind of a dire situation. Anyway, I was then in the hospital for about a week just for the kind of diabetes education and it was kind of a crash course in how to manage type one diabetes. And at the time, my insulin regimen was NPH. And regular to the fast acting because it was it was even before the time of humalog. And my blood sugar meter took 45 seconds to read the blood glucose results and counting carbohydrates and all of that stuff. So this was my diabetes education.
Stacey Simms 12:16
At nine years old, you were already on your way to playing music and performing as you did anyone say anything? I had to fit your first question, right? Can I still do this? What did they tell you about your musical career?
Right back to Alisa, she's gonna answer that question. But first diabetes Connections is brought to you by Dexcom. And they have this great partnership with Tandem now with basal IQ and control IQ. And we started on basal IQ as soon as it was available. And this is the Dexcom g six tandem pump software program, and immediately started doing less work for better results. When we switch to control IQ, oh my gosh, even less work even better results with diabetes. I don't know if you remember, but years ago, they started with just putting the CGM information on the pump and it didn't communicate, it's just there. But this is something else, the whole system keeps spinning more steady. His time in range has increased significantly, his agency, you know, I don't share exact numbers, but it is the lowest that he's ever had. Of course, individual results may vary. But to learn more, just go to Diabetes connections.com and click on the Dexcom logo right back now to Elisa sharing what she was most worried about at her diagnosis.
Alisa Weilerstein 13:38
Well, this is why I say 1992 was actually I mean, if one had to be diagnosed with diabetes, you know, at any time, it was an encouraging year to be diagnosed. Because I mean that the doctors who actually were well informed said, If you manage this, well, you will be able to live exactly the life that you want to live. And that was the constant messaging from my doctor at the time, all the nurses around each month this is and and they were teaching me how to do things. And he said this is the reason you have to do this is so that you can live a full life and do all the things that you want to do and play the cello do go to school, see your friends, play sports, do all of these things. And I remember there was just one issue, where I kind of had to make a special accommodation, which is what the finger picking, because of course I was already as you say I but I was already quite curious about the cello. And the left hand, of course is the hand that goes on the fingerboard. And I remember saying to my doctors, I'm not going to click my fingers on my left hence I won't be able to play and I but however if I was able to prick my fingers on my on my bow hand that wouldn't have affected that. So I only used three fingers to prick and my whole life after that I only I only use the same three fingers to pick my finger, my test my blood sugar, and luckily they accommodated and they basically well as long as you do it and as long as you don't hurt yourself. Sure. That was the answer.
Stacey Simms 14:57
I was going to ask you about that. Because I couldn't imagine especially the amount of finger prick you had to do back then. Yeah, Listen, I've, for somebody who nagged her son for years to rotate fingers do a different thing. Yeah, you were able to just move it around enough so that you didn't have issues with just those three fingers.
Alisa Weilerstein 15:14
No, I didn't. And, and even at the time, I mean, the lancets were very good, very painless, and very thin. So I mean, there was actually there was never an issue. And I mean, at the time, the recommendation was to test four times a day, I remember at the time that was considered like being very responsible. Of course, now, we would probably say that's kind of bare minimum. But as I got older, and I tested more often, I mean, I was asked to test before the continuous glucose monitors were accurate enough to kind of rely on I was testing 10 times a day, and I was just using those same three fingers.
Stacey Simms 15:43
That's so interesting. And you've mentioned a couple times 1992, we should just step back and mention as you listen, if you're not familiar, we're referring here to the dcct trial, the diabetes control and complications trial, which was really the first time as you said, that they believed that you could make a difference. I mean, it's hard to believe that before that time, doctors thought, Well, that's it if you have type one or juvenile diabetes, as they called it, you wouldn't live past 30. And this showed that you could,
Alisa Weilerstein 16:09
yeah, and you would kind of have to go to an alternative doctor to get anything more hopeful, or any kind of agency with it's really yeah, and
Stacey Simms 16:16
I'll link up more information on the dcct. It was such a pivotal time and diabetes. And it wasn't that long ago, when you think about it now. Alright, so you're then on your way, you're doing what you need to do. You've got your family on board, you're playing music, Cleveland Orchestra at age 13. And on and on. And I have to say, when I watch someone play the cello, and please forgive me, I am so musically ignorant, except that I enjoy listening. It seems like it's very athletic. It's a very physical looking instrument to play. Can you talk about that? Is it I assume that
Alisa Weilerstein 16:48
yes, it is? Oh, yeah, yeah, completely. And especially I'm not very tall, myself, I'm about five to my posture is good. You know, you have to learn how to use your body in a very efficient way, like kind of a lot of Alexander Technique. And yoga concepts can apply very well to pretty much any instrument, but kind of the cello, especially in terms of the strength that it takes. And truly free with instruments, you have to basically use your body to know how to use the natural energy and not natural body weight very well. And of course, it just takes a lot of years of practice to build it up. I mean, there's no substitute for time really, with that,
Stacey Simms 17:21
you must have by now of routine and you you the physicality of it, you've got that down. But when you were younger, and first learning, what did you do? Did you keep tabs like in your chair, or in your case, you know, how did you manage diabetes and playing
Alisa Weilerstein 17:35
I mean, I kept glucose tablets pretty much everywhere. playing the cello itself did not cause low blood sugar, I mean, there were a couple of pieces that I knew were kind of workouts in a way and that I would sometimes eat a little bit or maybe drink a little bit of juice before, I mean, like the way you would before going for a run, just to have like a little bit of energy to make sure that you have a threshold that can kind of carry you through if you're going to drop a little bit. So it was a lot of trial and error. And I just found out kind of what worked in I mean, in terms of going on stage, especially before the pump, certainly which I got an A pump when I was 16. So that was 98. And certainly before the CGM, I would test before going on stage. I mean, I've just tested in general much more on concert dates than on other days. And I always like to get to the hall about an hour before so that I could slowly put the gown on. So they put me so they kind of put my ducks in a row in terms of playing and just warming warming up slowly and kind of just getting myself in the mental space. But it was also blood sugar wise, it was just important for me to be able to test one hour before, kind of every 15 minutes. And then like two minutes before I'd walk on stage just to make sure that I was not going to get low on stage. I mean, like if I was 170, or something on stage, it wasn't ideal, but it was better than being 65 when you're going on stage because of course below that, then you kind of start to lose coordination. I mean, my ideal number to go on stage would be like 130 because the blood sugar's maybe slightly on the high side, but it's good enough that I felt normal. And I had a threshold to drop, so that if I walked offstage, and I was 85 or something like that would be fine.
Stacey Simms 19:10
You mentioned there were a couple of pieces that stand out as being more physical or do can you share those with us? I'm curious, which anything stand out?
Alisa Weilerstein 19:20
Sure. There's a concerto, which means that there's a solo instrument with an orchestral accompaniment, and the composer is Prokofiev, who was a Russian composer who actually died the same day that Stalin died. Oh, my 1953. Yes, the same day. So of course, nobody paid attention when he died, unfortunately, because it was one of those really, really tragic ironies to add to so many tragic ironies of the time, but he wrote a fantastic masterpiece for each other an orchestra called the symphony concert count, which is a symphony concerto. It's a 45 minute kind of tour de force, for the cello and for the orchestra as well, but especially the solo cello where which is just Just wild, very, very, very physical, technically very, very challenging. And it's just kind of an endurance exercise. And I remember just being very sure that I was not going to get low on stage. So I did a few practice runs of that pizza. The first time I played it in public, the first time I played it in with the orchestra, I was about 16 or 17 years old, I did several kind of practice runs, just running through with it with a kennel reduction for friends and for for my parents and things like that. So I knew kind of what my blood sugar threshold was with that piece in particular, it's funny, it was
Stacey Simms 20:34
Prokofiev. All I know is Peter and the Wolf.
Unknown Speaker 20:37
That's what I think. Yes, of course. No, it's just what I pay for my daughter all the time. You're fantastic.
Stacey Simms 20:43
It's funny. Oh, yeah. That's great. Yeah, yeah, at this point, it's almost like a professional athlete. In terms of I assume you have a routine, you know, you know,
Unknown Speaker 20:52
look, at this point, you
Stacey Simms 20:54
know, what you're doing. I'm curious. But anything throw you for a loop in terms of diabetes. These days, I'm thinking about advice for, you know, younger people who are starting out in a musical career, or, you know, just anything like that. So what throws you for a loop, we're in there?
Alisa Weilerstein 21:10
Oh, well, sometimes I can have a very inconsistent response to stress or to nerves, because generally speaking, I don't get nervous on stage. But perhaps the kind of travel situation, especially these days can make me quite stressed out and, you know, say high strung and nervous and then my blood sugar just shoots up, sort of out of nowhere, or it can be like a kind of a sticky high, and I can't get below 185, no matter how much I mean, like I can be, like, feel like I've got an ID of insulin and nothing brings it down until I relaxed, that can just sometimes be really kind of flummoxing and very frustrating. And then of course, I get more stressed about the blood sugar. And then of course, the stress response doesn't go down. So that's something that I just find very frustrating. And something that I feel is kind of out of my control and less like kind of just force myself to do some deep breathing in a kind of airport travel situation, which is stressful. Other things that life can throw your way. unexpected things I just signed, you know, test test test, look at the CGM as much as possible. And then you can catch the kind of unexpected highs and lows much much more easily. And so that's my advice to anyone just test as much as possible. Or if you have a CGM. Just make sure that you're really aware of what's going on there.
Stacey Simms 22:20
Can I be nosy? And ask where you were your tech? Yeah, she during performance, of course, I'm trying to think of the body motion and where it's, you know, where it makes sense.
Alisa Weilerstein 22:29
Well, not on my arms. Probably imagine, I put my infusion set in the center of my stomach. And when I'm wearing a gown, there's, I'm not sure even which company makes any more. But I think there's the diabetes mole, which has something called the five thing and this kind of like a garter belt, and it has a pocket, which is where I put my pump, when I'm wearing a dress or a concert gown.
Stacey Simms 22:52
Right? You've mentioned your daughter a couple of times, if they did, were you concerned, I obviously, you know, it takes a lot of work when you're wanting to get tight control before you get pregnant. I'm curious. Sounds like your doctors told you from the get go that you'd be okay. Can you share a little bit about that journey in terms of, you know, deciding to have your child,
Alisa Weilerstein 23:10
it's something that was kind of hanging over my mind. And it was it that's a personal thing. It's just not to say that, oh, you get a diabetes diagnosis, and you worry for the rest of your, let's say, especially if your child 17th, whether you're going to be able to have a healthy pregnancy or not. But I did actually have that kind of worry. And I would say I spent probably two years before we decided it was the right time to try and conceive just kind of experimenting to see how tight I thought I could get the control, especially with an intense travel schedule. And I found that at the time, the CGM was getting better and better. Like as you know, back in, you know, 2008 2009, the CGM was maybe 40% accurate assess. I mean, it was just terrible. I was like throwing it against the wall sometimes because it would just as I took Tylenol or something, it would go up to show that I was reading 400 because it couldn't, it didn't react about this kind of medicine and other things. And it was fall off. And it was just awful. So I get back two years before, you know my daughter was born in 2016. So this was like 2014 or so. I mean, my agencies had been in the low sevens at the time, and then I got them down to 6.8 6.6. And I thought, Okay, I think I'm going to be able to manage this. Because I was doing a lot of fine tuning. And then as your son will probably relate to this, like, the more you pay attention, the worse you actually think your blood sugar is, but it's actually your budget is actually getting much better. You know what I mean? Yeah. And so this was something that I realized that my doctor was telling me I was doing it, basically. And I was like, Really? I don't think I'm doing and then I saw Oh, my average was like 129 Oh, okay, that's not bad. But I mean, of course, it needs to be better than that for pregnancy. But this is in range. I could finally envision, you know, having an average of you know, 110 or something like that. And so we got pregnant and of course, the pregnancy itself is the biggest motivator. And I, of course, I was poked and prodded more than I care to remember during the pregnancy because of course, I was classified immediately as high risk and I had to see the doctor, you know, all the time, but I was working and traveling until 35 weeks. Oh, well, you can find a YouTube video of me doing my second to last concert with our daughter, my daughter and my belly. I played Hindemith concerto with the Frankfurt Radio Symphony. And my belly was absolutely huge. And then like, I'm walking on stage with this thing. And I saw myself, wow. I mean, I remember what it felt like. But seeing it now as it was some distance. It's kind of kind of amazing to me that I did that. But it was important to me to keep going. And I generally had a very easy pregnancy until the very end, and I felt best. And my blood sugar was best when I was active. You know, I was under strict supervision of my doctors, but I managed to do that.
Stacey Simms 25:50
How do you talk about your diabetes with your daughter?
Alisa Weilerstein 25:52
What does she know? She knows, in a very general way, if she sees me drinking juice, she knows that I'm low, because I don't drink juice. Otherwise, she knows that I have diabetes, she knows the word diabetes, and what you know, let's say in a very general way, what it is, and she knows what my medicine is, and that she's not supposed to touch it. And she can watch me kind of handle it, things like that. But that that's this is only Mama's territory to kind of handle things like that. So sometimes she likes to kind of look at my pumpkin to know what it does and things like that. But other than that, she doesn't know too many other details.
Stacey Simms 26:22
One of the things that when we were talking about coming on the show, I noticed that you're working with he Genesis, can you tell me a little bit about what you know who they are,
Alisa Weilerstein 26:31
he Genesis is? Well, it's an amazing company, they don't only work on diabetes research, they work on kidney disease and liver disease. And really, they're kind of primary goal is to make sure that there are no organ shortages for anyone who needs them. And so what they're working on is Type One Diabetes islet cell transplants. So they have an incredible immunology team, which I've been in touch with a bit. And it's just, it's very, very exciting, the research that they're doing, and my association with them really is to kind of spread the awareness of what it's truly like to live with type one diabetes, and to stress the need for a cure. Because nowadays, with biotech, making such amazing advances, sometimes people around me who don't know me, so well look at me, and they they don't really even know that I have diabetes, and they say, Oh, well, you make it look so easy. And it seems like with the technology, you can live a very, you know, you What do you need a cure for in a way. And this, of course, is exactly the wrong kind of message that you want to send us and Well, yes, I'm a very positive person, and I manage my diabetes as best I can. And I have the technology and the knowledge to do that. However, as we were saying before, living with Type One Diabetes is a 24 hours a day, seven day a week, 365 day a year job. Even with the technology, there is not a moment that goes by that you can really relax about it, you always have to be paying attention. I don't know how to look at a plate of food and not count the carbohydrates. And I don't know how to go for a run without thinking, Okay, how is this going to affect my blood sugar is my pump actually going to react to that and say, if I if I go for a sprint, how many glucose tablets do I have? Am I gonna drop too low to actually finish it, that kind of thing. And that's even with the technology that we have now, not to say nothing of hyperglycemia, gun awareness and all of these other things that we know are dangers with living with type one diabetes, and you as a parent of a diabetic have a type one diabetic who is luckily very well controlled. This is probably something that that you were always concerned about hypoglycemic unawareness overnight and things like that. I know that this was certainly something that my mother probably lost countless hours of sleep over. And type 1 diabetes is, you know, to say nothing. Also at the expense of managing type 1 diabetes, we all know what insulin prices are, we know what the prescription medication needs are. And the fact that type 1 diabetes is actually the most expensive chronic disease to treat of any chronic disease. And so this is really why we all need to be lobbying this and countless other reasons. This is why we are all lobbying for a cure. Not treatment, pain, of course, better treatment, but in the absence of a cure. But the ultimate goal, obviously is is a real cure.
Stacey Simms 29:08
We didn't talk much about music during this interview. I didn't know you were here to talk about. Okay, that sort of thing. But you have been playing according to what I've read you really been playing since probably before you remember much right? Did you start playing cello at age four?
Alisa Weilerstein 29:23
I did. Yeah.
Stacey Simms 29:24
Is it still exciting? Is it still challenging? Is it still fun?
Alisa Weilerstein 29:27
Oh, yes. And I'll eat all of the above. Yes, challenging, exciting, fun, frustrating, wonderful. tear my hair out type of frustrating sometimes as well. But you know, is one of those things where there's no concrete goal, really, I mean, you just have to keep growing. And in a way, there's a kind of a parallel with diabetes management, there are two because as we know, there's no way to do it perfectly. And you have to just do the best you can. And so that's like being an artist. You're constantly striving to be better to be the most studiers to yourself. To the composer's to what you're trying to say, you know, you're always searching for ways to do that better and to do it more clearly. And to do it more Honestly, I'm always experimenting.
Stacey Simms 30:09
Well, Lisa, thank you so much for joining me and for making time to talk about this. It's been a crazy time we're living in now, but I wish you the best as you're now in Europe. And, but really, thank you so much for spending some time with me and my listeners.
Alisa Weilerstein 30:23
Oh, my pleasure. Thank you so much for having me on your show.
Unknown Speaker 30:31
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 30:37
I will link up more information you've got here Elisa play. So I'll put a lot of that in the show notes, a couple of different links, including, you know, she mentioned that video where she was pregnant, I found that and she obviously looks great. But Josh, he plays with such passion in every video, I think you'll love it. So I'll definitely link those up. Whatever app you're listening to, if you're listening on an app, they always have show notes and you can often get the links there as well. But if you have any trouble as I always say just go back to the homepage and that will help you out. Tell me something good in just a moment. Did you hear the Dexcom at the Supreme Court we're going to talk about that. But first diabetes Connections is brought to you by g Bo hypo pen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Jeeva hypo pen comes in. It's the first auto injector to treat very low blood sugar. Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Jiva correctly, I am so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk.
Didn't tell me something good. This week, let's talk about the Girl Scouts for a moment. This is all about Isabella. She was just diagnosed in April. And she is part of a Girl Scout troop. Her mom Carrie posted a photo and I wanted to talk to her about that it looked so great. And here's what happened. Isabella is part of a Girl Scout troop. And she did a presentation on diabetes for diabetes Awareness Month. But this went a little bit further than a lot of the presentations that we have seen. And Isabella let everybody or asked everybody to do a finger poke to experience a little bit of what she goes through. And I'm laughing because the photo that's posted and I'll see if I get permission to share this is Isabella poking an adult's finger, and the adult is looking a little apprehensive. But there's this little girl in the background who just is very concerned, she's got this look on her face. Like really? What do you have to do that all the time? You know, it's a wonderful picture to show the empathy, I think and really also, and this might sound a little bit flowery, but I mean, this the bravery of Isabella, it's not easy to show other people, all the stuff that you have to go through when you have type one. And you know, maybe her friends would be scared or maybe they would treat her differently to have the support that she has, I think is really special. So Carrie, thank you so much for sharing that. Isabella, congratulations to you for sharing all of that. And good on the Girl Scout troop. That's awesome. Our next Tell me something good comes from the highest court in the land. Last week, the Supreme Court heard arguments about the Affordable Care Act. This is the third time in eight years that the Obamacare as it's also known, has been in front of the Supreme Court. But what I want to focus on is Justice Sonia Sotomayor is Dexcom Yes, of course, many of you already know that. One of the justices lives with type 1 diabetes. If you haven't read her incredible biography. I will link that up in the show notes. And yes, she is one of my dream guests. So somebody helped make that happen for us. I reached out to the press office, I'm gonna continue to work it will get her on one of these days. But her Dexcom apparently went off crystal a prick. liano heard it. She is an incredible diabetes advocate. And she was the very first guest on this show. Yeah, back in 2015. And she tweeted out that she had heard it she thought it was her Dexcom going off, but it was Justice Sotomayor is and that sparked a little bit of conversation about why would it be going off as a clerk kind of bring her juice box? And is it frustrating that you can't silence all the alarms? And why would you want to silence all the alarms and it was interesting to hear people go back and forth about that. One thing that did come up if you do want to silence the alarms, and look, I know we want that urgent low to be going off, but you are grownups as you listen, and a lot of people do not want to blaring at their workplace or they want to have a different way of doing this. Right. We all want our DIY stuff. If you don't already know one workaround is to stick headphones into the jack on your phone and then the alarm will go off but it'll go off in the headphones and it won't bother anybody else at work. As a mom, I don't want you to turn your urgent low alarm off. I mean, come on. I'm a mom, but I get it. So that was one thing but came up. But isn't that interesting? I have all sorts of personal and prying questions for Justice Sotomayor. Maybe that's why she doesn't want to come on. And talk to me about, hey, where do you put your Dexcom? Do you use skin tack?
Unknown Speaker 35:12
We would have more important things to talk about. I
Unknown Speaker 35:13
Stacey Simms 35:14
if you haven't told me something good story, please send it my way. Stacy at Diabetes connections.com or posted in the Facebook group Diabetes Connections, the group. I feel like this month has been busier. And not just because it's diabetes Awareness Month. I'm actually I there's stuff going on. I'm doing panels. I'm taping things more than the podcast. So it's kind of fun. And I'm feeling more energized than I have been in a while, which is nice. This weekend. I'm participating in the healthy voices conference. This was supposed to be in the spring, I think we're supposed to be in Dallas. I mean, I can't even keep track of the number of airline tickets. I had to reschedule, like most of you. But I'm excited because I'm not just talking about diabetes. I'm actually not even talking about diabetes. I'm talking about podcasting. And I'm talking about teaching podcasting. And I will be teaching health advocates, patient leaders how to podcast and how easy it is, you know, not to be afraid of it, how their voices are so important, but truly, it's not an esoteric, you know why you should podcast or your voice matters, which it very much does. It is down and dirty. You plug this microphone into this program. Here's how you get your RSS feed on Apple. I'm thrilled to be doing this. And if as you listen, you know somebody who wants to hear more about that stuff. podcasting is obviously my passion and I love helping more people get started. As this episode airs. I believe it will be tonight, I am taping something that will be for air in December. It's the annual Wait, wait, don't poke me, which is a game show that I do for friends for life. It is a take off of the NPR show. Wait, wait, don't tell me. I love it so much. We have so much goofy fun, and you'll be able to hear that you'll be able to watch that, if not at the conference in December. Shortly thereafter, I'll make it public and we always have a good time. Please remember that all this month you can get the world's worst of diabetes mom real life stories of raising a child with Type One Diabetes for a big discount for dollars off at Diabetes connections.com use the promo code November, he makes a nice gift for the holidays. Boy, I'm so bad at this advertising stuff. But you can go ahead and read the reviews on Amazon. You can purchase it on Amazon as an audiobook or an E book or head over to my website and get the discount. And I forgot to mention if you buy it off my website, I'll sign it for you. There's a little form on the on the very bottom of the order form. When you fill it out. It'll say order notes and just put if you want me to personalize it, or anything you want me to write, assign them all but if you put it in there, I will personalize it for you. thank you as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach.
Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. You can listen to our episode with Mark Thompson here.
In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and a new podcast about diabetes and mental health.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011.
Jason Cyr 0:40
You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do?
Stacey Simms 0:56
Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle
In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network.
Welcome to another week of the show. I am so glad to have you along. I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two, we are getting close to his 14 year diversity. My husband lives with type two, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed.
I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that.
Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well.
And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com.
Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you.
Jason Cyr 6:16
Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered.
Stacey Simms 6:22
You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed?
Jason Cyr 6:42
This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things.
Stacey Simms 8:06
And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay?
Jason Cyr 8:10
Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked.
So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military.
And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired.
Stacey Simms 11:26
All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment?
Jason Cyr 12:06
Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can.
Stacey Simms 13:02
That'd be just be the perspective of a parent versus family
Jason Cyr 13:05
Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind.
Stacey Simms 13:37
When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service.
Right back to Jason answering that question. But first diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed.
Jason Cyr 14:58
I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive.
And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to those guys was just great.
Stacey Simms 17:55
When you got your Dexcom, having been someone who already kept their own spreadsheet, and pretty detailed ones, I'm curious what you've done with your data, I famously on the show, have the perspective of my son and I, we're really not big data, diabetes, people we are go by feel, you know, we do great, it's all good. But I love respect and marvel at people like you who really dial into it. So with that being said, when you got the Dexcom, and you opened up clarity, or you looked at these things, what was that like for you?
Jason Cyr 18:29
Oh, it was huge. It's even better now with the six. I mean, I started off with before, you know, went through the five transition to the six. And the six is just like it's almost overwhelming the data that that? Well, it is overwhelming, but it's just great. It's also really great to see the the amount of stuff that's available to you. And so yeah, I use the data all the time. It's great. When I'm racing, we just, we didn't have much of a race season this year. But I think I did five races, and three of them were enduro racing, which is the it's a mountain biking discipline that I focus on. And those races can last for four to six hours, seven hours, you're only racing stages. But you're you're riding from the end of a stage all the way back up the mountain to another stage to race back downhill with these chips on your bike where they they're collecting time. And so seeing the trends, whether it's going up or down or it's really good to see it helps immensely. And then I also look at that data after the race to see it because that racing discipline is very anaerobic and going full gas for the three this to seven minutes or eight minutes that the stage lasts. When you finish because your anaerobic, you know you're you're dumping glycogen in your blood, you're getting these huge spikes that you know your body has to test to deal with later on. And so knowing exactly how much insulin to take, after, say two stages and maintain a good blood glucose level is really important. And obviously you couldn't do that with just by finger sticks, trying to figure it out. So it just Yeah, the data that I get from that informs my decisions and racing, especially over a long day, or days leading up to it, I couldn't do without it. So I think the CGM is really important.
Stacey Simms 20:12
I must have sounded ridiculous to you, I promise we don't just wing it with my son,
Unknown Speaker 20:16
Jason Cyr 20:19
also get that I am a total geek. I mean, that's I think there's reasons to push me to cycling coaching, because I just love looking at heart rate data and power data and overlaying these things and figuring out the puzzle of how we make someone stronger and faster.
Stacey Simms 20:33
Yeah. And I'll tell you what podcast listeners are my listeners are super data people, which I feel bad sometimes that I'm their host, because people that listen to podcasts in general want more and more and more information. So sometimes I'm like, sorry, but you know, we do the best we can, and want to go back if I could, to some military questions. Because there are so many young people who were diagnosed with type one who unfortunately, cannot serve in the military. This has been their dream. And curious what your perspective is, do you think that will change? I know that there's they're looking at it. I mean, there was a study a year or two ago that they were doing at Fort Bragg, with people with type one trying to kind of see how more modern diabetes technology might help. What's your perspective on that?
Jason Cyr 21:16
Yeah, I think, and obviously, I'm not a physician, or a doctor in any way, or probably an expert, I'm probably an expert on my body and how it reacts, I think that maybe technology could fix the problem. That said, I make silly decisions. When I'm hypoglycemic, and soda, I think, to put a combat leader in a position where they have to make life and death decisions. And there's potential that you could be hypoglycemic in the moment, obviously, is detrimental. And that's just on face value. And I haven't looked at how the technology could change it. But I will say that it has made me much more aware of highs and lows just because of the alarms that are associated with a continuous glucose monitor. So yeah, I think it's possible. Yeah, for sure. But I would let you know, the experts make those decisions that said, I can empathize with someone who just really wants to be have a career in the military, because it's made me who I am. I mean, it does. Obviously, my military service doesn't define me as a person, but it is a huge part of my life. There's very few moments I will say that I did not enjoy in my 23 plus year career in the military. So yeah, I hope that we get to the point where that's technology fixes that or perhaps there's a cure someday, I certainly wouldn't enjoy that. Because I tell you what, the first thing I'm gonna do is eat a whole cheesecake.
Stacey Simms 22:39
When you return to the military, if your diagnosis what you do, what was your job? What were your duties? Um, I
Jason Cyr 22:45
think what was my first my, I think I was the, the Operations Officer for this critical infrastructure protection Battalion, which we started, we use a lot of 18 series, guys. 18 series guys are special forces, guys. And we modeled that program off of what the defense Threat Reduction agency does. And they typically use a, or at least in the past to have I'm not sure what they do now. They use a soft guy like a Seal or a Green Beret to do the targeting piece when we look at how we would defeat or take down like, say, a facility. And so I was I think I was an operations officer. And then I moved to the executive officer, the deputy commander of the that critical infrastructure protection Battalion, and I spent the rest of my career there, basically, because I was working for these two officers that wrote letters recommendation that keep me in the military and so that I finished my career out there. And you know, probably one of the reasons I did retire is I was never going to go and command a combat unit ever again. That was not going to happen. You know, I wanted to be obviously I joined the Ranger Regiment and then spent time as a special forces guys starting as an 18. Charlie, which is a special forces engineer. You know, I did those things because that's what I wanted to do.
Stacey Simms 23:55
You mentioned that now you're coaching your coaching other cyclists? Yeah, correct. How so? How is that going? And I'm struggling to think of how to ask this because you started doing that during this pandemic.
Jason Cyr 24:06
They I did and I have to say it's been it's been incredibly successful. The company is cycle strategies. We coach road cyclists, cyclocross, but we focus on you know, the mountain bike discipline, so enduro, downhill, cross country, mountain biking, and I thought, hey, because we're in the middle of a pandemic, this will give me some time to get my feet on the ground, figure out the business aspects, you know, subs, figure out the books, figure out how we're going to deliver the coaching process, and it's been busier than I ever thought maybe that's that is because of, of this. In the process of coaching. Most of it is online, I use an online platform called training peaks to coach my athletes, and I do do the other side of the business is the skills piece. And so I do do skills training with adults and kids, but we're wearing masks. I don't touch it. You know, we don't there's no contact. We just I'm really trying to do our best to stay six feet away in cycling is sort of a socially distance thing anyway. So
Stacey Simms 25:06
it's been amazing though, because cycling has been so popular. I mean, it's been more and more popular every year. But during the pandemic, we tried to get my son's bike repaired. And it was unbelievable. how busy everybody is there at a party. You know, everybody wants to bike ride right now.
Jason Cyr 25:21
Yeah, yeah, I know, our local bike shop has had a really difficult time, trying to come up with way logistically to come up with ways to find parts for folks and just keep the item. Yeah, so it's been great for the sport. I think it's Yeah, it's helped me with a few clients that have just decided, Hey, I'm going to take up cycling, I really enjoy this. Oh, I think I need a coach. And I'm getting an email. And yeah, it's, it's, it's been great. I love it.
Stacey Simms 25:46
What is your advice for people with type one who are reluctant to get active? Because it is a lot of work? And frankly, even with all the technology, there is still some fear, right? It's hard to do a two hour bike ride without going low. If you haven't done that already.
Jason Cyr 26:03
Yeah, my recommendation is, well, first off, I just think living a healthy lifestyle helps you control your blood sugar, much better. And isn't that the intent, obviously, we don't have a pancreas that functions, at least that part of the pancreas doesn't function properly, to provide insulin and the glucose back in the cells. And so exercising helps you a treat some of that out of your system to help to put it back in. It makes you more responsive to insulin. And again, I will full disclosure here, I'm not a physician at all. I'm not an endocrinologist. But that has been my experience. So yeah, that's the first point is it really helps me at least control my blood sugar by just exercising and being consistent about it. Second, it's, it's just a healthy thing to do. And the third thing I would add is that taking it slow. So you may start with 15 minutes of writing and see how your body responds to that. And then add another 15 minutes until you get to an hour something that would be my recommendation. And I just feel like it's a great way to live. Anytime I'm sedentary, I am now chasing numbers. But if I just stay active, generally active and I'm not saying I go out and you don't have to go out and train for two or three hours every day. That's nice. And I know folks that do do that. But I don't do that. I may go for a couple hour ride to three times a week. Otherwise, I'm just doing an hour and maybe a little bit of weightlifting or something in nowadays in the garage.
Stacey Simms 27:27
What do you still like after all this time about riding your bike about cycling?
Jason Cyr 27:32
Oh, yeah, that's a great question. I don't know I'm sure my wife would have. She would say I'm obsessed. I don't know. All things. two wheels. We have dirt bikes. We've got cyclocross bikes. I even got a unicycle this year, as a way to figure out how to work on some balance. I don't know I think for me, cycling creates an experience where I can think about the day I can decompress. I've always used cycling when I was in the military, especially command to decompress. So I would come home, I get on my bike for an hour, and I go just smash out some laps, and really get my heart rate up high a few times, do some intervals. And I would be completely decompress to come home and have dinner with the family and being a good husband and a good father. So for me, I think it's just a bit of an escape, perhaps the endorphins that are released in the process of of executing some physical activity. I'm not sure but I do know that I do a lot of thinking. When I'm while I'm writing,
Stacey Simms 28:27
how's the unicycling going?
Jason Cyr 28:29
Good. I took it took me a solid hour of falling before I figured it out. I put knee pads on and shin pads is pretty funny. The helmet everything. And I just went out there. I just started getting after it. But now I can ride all the way around town on it. Wow. Sure, my neighbors thought that I was
Stacey Simms 28:48
gonna say does anybody stop you? Or take Oh, yes.
Jason Cyr 28:50
Well, interesting enough. My neighbor lives right across the street. He's a really cool guy. He's probably in his maybe mid 50s or something like that here. This is all Jason Let me try that thing. And as I said, God, be careful this thing you'll get hurt. And he jumped right on it and wrote it right down the road massive. Oh, look at that. That's awesome. And he knew, you know, he, he had spent his his youth riding in them. But I didn't know that. So I thought it was great. I was amazed. That's awesome. That's fine.
Stacey Simms 29:16
Yeah, you just cycling isn't the kind of thing that you just jump on and go, that's somebody who had a little bit of experience?
Jason Cyr 29:21
No. And I've got a few kids that I coach, and they all ride unicycles. So I said, Well, hey, you know, if they're gonna do it, I've got to figure this out. So every time in between, like after races or before races, they're just riding around on the unicycle. And I have to say, what it really engages your core. I thought that was really cool. And then the second piece that you get out is this great building of motor skills, and motor schemata or proprioception that you're kind of building and so the balance that comes from that is great for cycling, especially the offer of disciplines.
Stacey Simms 29:52
So listen, I went all over the place. Was there anything you want to talk about that I didn't mention?
Jason Cyr 29:56
No, I would I would add that, you know, thank you so much for letting me You know, I guess, Share, share my story. I don't think it's remarkable. I'm flattered that you think it is. The last thing I would add is that service and the military and service to your country is one, it is just a great privilege to lead and serve one serve, but to lead and be given the great responsibility to lead men and women, I think is just it's a privilege, really, and I wouldn't have done anything else had I had a had an opportunity. I just I've really enjoyed my service to the military and just serve with all those people. Obviously, there's ups and downs. You know, I've lost friends along the way, you know, in Afghanistan and deployments, and just other places, training accidents, those kinds of things. But it's just been a great opportunity. And, and I enjoyed every bit of it.
Stacey Simms 30:42
Well, we can't say thank you enough for your service, and how much we appreciate everything that you've done. And thank you so much for coming on and sharing your story. And if you don't mind me asking, I would love to have a unicycle picture. Oh, sure. Next time you're on.
Jason Cyr 30:56
Absolutely. I've got your your number. I'll text you one.
Unknown Speaker 30:59
That'd be great. Thanks
Unknown Speaker 31:00
so much for joining me.
Jason Cyr 31:01
Thank you, Stacey. Thanks very much.
Unknown Speaker 31:09
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:14
More information about Jason's story, he was written up quite a bit for bike riding with the Novo Nordisk folks, as he mentioned, I mentioned that unicycle shot, I will put that in the Facebook group as well. Many of you who gosh years ago used to follow my blog may recall that my kids elementary school had a jump rope club. And stay with me, there's a point here, the jump rope club was featured, we put them into the Big Blue test two years ago, which was a wonderful effort from the diabetes hands foundation to get people to exercise and check blood sugar. And it was a really great outreach efforts. So the jumper club was featured in that. But another elementary school where a lot of my friends kids went, had a unicycle club. And that always blew my mind. Because, first of all, who had the idea to start the unicycle club, and it was very popular, and they did just as much with those unicycles as my kids did with the jump ropes we had, like 40 kids, fourth and fifth graders zipping around on unicycles. It was bonkers, but good for you. Cornelius Elementary School in North Carolina, we salute you. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, there were two years almost, I think we used it before share. Trust me when I say using share and follow apps has made a big difference. Then he and I now set parameters about when I'm going to call him or text him you know how long to wait, that kind of stuff. But it really helps us talk and worry about diabetes less. You know, if he's away on a trip or at a sleep over, it gives me peace of mind. It also helps I love this if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on loads before there were a big issue. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week Happy Anniversary diaversary. Happy 10 years to the college diabetes network. I can't believe this organization is 10 years old. We have been following their progress from the beginning. The college diabetes network started when Christina Roth basically started a campus group by herself wanting peer support on college campuses. And then she expanded into a national nonprofit which only served the young adults it really was geared towards college kids. But as it grew, and Christina saw the need, it continued to expand and now includes information for high school students, college students, young professionals and people like me, parents and family who are trying to stay informed, stay calm, learn more about sending their students, their kids with T Wendy off to college. So congratulations to the college diabetes network with more than 224 chapters now on campuses across the country. They are just doing an incredible job. They have a bunch of celebrations going on this month. And Benny is he's a sophomore in high school. I'm trying not to get too far ahead of myself. I have learned with all these years with type one, you know, in my family, that while it's good to be prepared and think you know what's coming, you really don't know what each stage is going to bring with your child because every kid is different. So I've stayed away from college type one stuff as much as I can until we get just a little bit closer. another bit of good news this month. The diabetes psychologist podcast has launched and this is with Dr. Mark Heyman and I spoke to him earlier this year. And then kind of off the year we talked about his podcast and I'm thrilled that he took the dive It has done this, I will link it up in the show notes. There's just not enough in terms of resources right when it comes to mental health and diabetes. So kudos to him for launching this. He has launched it as a limited series. He has a bunch of episodes out, and we shall see if he continues, but I'm thrilled that he put these important episodes and good help out there.
And this last one isn't really a concrete Tell me something good, but it's just something I love. You know, every year, there are diabetes challenges on Instagram and Facebook, you know, social media stuff, I'm sure there's stuff happening on tik tok and snapchat that I will never say, but it's all about, you know, post every day, and they give you something to post. And if you're interested, I mean, we're almost halfway through the month. But there's still a long way to go. I'll link up a couple in the show notes. And I'm sure you've seen them on Instagram, but I, I love these. I don't participate anymore, because I have a lot of other stuff going on. And you know, it's Benny's type one. I mean, it's really not something I can take pictures of all day long anymore. I'm not taking care of him in the same way. But I love to see these posts. I don't care if you're posting twice in a month or every single day, your posts are seen. They matter. And they make me smile. They're not all happy posts. Certainly they're all good news posts. That's not what diabetes is all about. But it really is heartening to remember that this community is still the DRC it's the diabetes online community, and your voice matters, your pictures matter. So thanks for letting me take part a little bit in what's going on in your diabetes life. That way, if you haven't told me something good story, you can always reach out Stacy at Diabetes connections.com. And I regularly asked for submissions in the Facebook group, Diabetes Connections group.
A couple of reminders of things I've been telling you about in past episode First, the contests are going on right now I've got two contests this month, one on Instagram one on Facebook. So the Facebook one is only in the group. It's in our podcast group. But the Instagram one is on the Stacey Simms account, it's the only account I have over there. So definitely check those out. Again, links in the show notes, any app you're listening to will have the show notes. So you can always go back to Diabetes connections.com. And the second thing I want to make sure you know about is the ebook, Diabetes Connections extra. I'm giving this away for free. Yes, you do have to sign up for my newsletter. And if you already signed up for the newsletter, you can still sign up and get the book you will not get double the newsletter. Although, you know, would you really mind hearing from me more than once I know. But definitely sign up and get that ebook. I think it's really good for newer diagnosed families, for people who have maybe just started a CGM who have never really figured out what ketones are. And I think for veteran families, and really well educated people, let's face it, like yourself, probably who listened to this podcast every week. It's fantastic to give to the other people in your life, who may not really understand diabetes, because Diabetes Connections extra is full of conversations about the basic building blocks of diabetes management. And some people just learn better when they read a book, rather than sitting down with a grandma, or sitting down with your best friend who's interested and kind of explaining. And that's what I think it's really going to be good for. But
you tell me I'm interested to see what the reaction is to this. That is Diabetes Connections extra and we are giving it away for free, it will not be free forever. I'm going to put it on Amazon as an E book in a couple of weeks. Okay, thank you so much to my editor John Bukenas from audio editing solutions. And thank you so much for listening. It means the world to me that you're here week after week. I appreciate it so much. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 38:38
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
JDRF began this year by funding more research projects than ever before, but after COVID changed everything, what does the future hold? We caught up with CEO Aaron Kowalski to ask what their mission to "cure, prevent & treat" type 1 diabetes look like in a time when fund raising is down and the future is unclear.
In Tell Me Something Good find out about two contests Stacey is running. One in our FB group (see link below) and the other over on Instagram.
We're celebrating 1,000,000 downloads!! Get your free Ebook "Diabetes Connections Extras" full of expert advice for managing insulin-dependent diabetes. Terrific for newly diagnosed families or caregivers and friends who want to learn more.
Get the App and listen to Diabetes Connections wherever you go!
Episode Transcription (rough transcript - check back for edited version)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first 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 0:28
This week, catching up with JDRF’s CEO to talk about what this year has been like, and what it all means for their mission and research going forward. I also asked if he felt it was a good decision to keep those fundraising emails going during a pandemic.
Aaron Kowalski 0:44
But the decision to continue to ask people to support us was not to have people feel pressured that they were struggling, but for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have.
Stacey Simms 1:00
Aaron Kowalski is the first CEO of JDRF to actually live with Type One Diabetes. We talked about a wide range of topics.
Tell me something good a big milestone to share with you and of course, it is diabetes awareness month we've got contests to talk about. 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'm your host, Stacey Simms, and my son was diagnosed almost 14 years ago, his diversary is in early December. He's a sophomore in high school now he was diagnosed as a toddler, my husband lives with type two diabetes, I do not have diabetes. But I have a background in broadcasting local radio and television news. And that is how you get the podcast.
It is of course diabetes Awareness Month, every year in the month of November. And we say that this is more for people outside the community, right, it's our chance to educate them about diabetes, because every day is diabetes Awareness Month once you have a type of diabetes, so I'm not going to do too many different things on the show for this month. But I have some efforts going to educate people outside of the usual suspects around here. I'm also going to be running two contests, I'm going to share all that information. After the interview one contest on Instagram one on Facebook, if you follow me, you will see them if you don't more information coming up.
I also want to let you know that I have released an Ebook. This is something I've been working on for quite a while. It has selected transcripts from the podcast, but it is in a beautiful, easy to read form. And the theme of the book is a comprehensive look at some of the questions that we all get asked over and over again. So I'm going to put a link in the show notes. It is free. Yeah, yes, sign up for my newsletter. If you've already signed up for the newsletter, if you already get it every week, you can sign up again, I promise you won't get to. But you will get the free ebook. If you remember we've been doing these Diabetes Connections extra episodes, where I put out an excerpt and then the much longer episode a couple of days after. That's where these transcriptions come from. So it's all about CGM, all about insulin all about ketones all about blood sugar lows, basic stuff that I think is really good if you're newer diagnosed, if you're looking for a refresher, or if you want to share with a caregiver or a loved one who wants to learn more, but might learn better from an ebook, you know, on their Kindle than from a conversation with you. We all know people like that. So I hope you share it. I hope you like it. Again, it is free. You do have to sign up for the newsletter, more information in the Facebook group and in the show notes Just go to Diabetes connections.com and you will see it linked up right in this episode.
Okay JDRF CEO coming up in just a moment, but first Diabetes Connections is brought to you by One Drop. And you know, when I spoke to people at One Drop, I was really impressed at how much they get diabetes. And it makes a lot of sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is Aaron Kowalski. He has been the CEO of JDRF since the spring of 2019. Of course this has been a challenging year for everybody to say the least. And when the crisis first started, I think we all knew that nonprofits were going to take a big hit. As you will hear in the interview. I sent to Aaron and email with my reservations look I'm a supporter of JDRF, financially, and I've been on the local board. And I felt that fundraising as usual would be a mistake. I advocated for a fund that would help people who we knew were going to lose their jobs and would need immediate help. But I am not inside JDRF. I haven't been on any board with them for about eight years, maybe maybe a little bit more. But I thought it would be helpful to have some background of my opinion, and where I stand at the start of this interview. But I also wanted to let Aaron give a research update at a sort of a state of the state. So there's a lot going on here. But I was really thrilled to he came on and was so upfront, really answered my questions and gave us a lot of information. Aaron, thanks so much for spending some time with me and my listeners. I appreciate it's good to talk to you again.
Hey, Stacey, thanks for having me on.
Stacey Simms 5:48
I'm not exactly sure how to jump in. I feel like everything I say about this year has become a cliche, but I'll barrel through it in that this is a year like nothing we've seen before. Can you give us a little bit of a kind of a state of the state of JDRF as we sit here in November of 2020?
Sure. I think like everybody, the the the last number of months have been very difficult. And certainly it's been for JDRF. I wish I could say a few things. One is pre COVID. I had a meeting and this goes back into early March with our board of directors and I, I told them that this was an unprecedented time for research progress, and amazing advancements happening on all fronts of diabetes research. And I'm sure we'll talk about those. And then of course, as we all know, COVID ahead, and fast forward to November. And I guess what I would say is just that I've had to make some changes, we reduced our staff somewhat significantly, we have a number of chapters we have from over 60 to 29. But the intention, the mission hasn't changed at all. And all of these changes, were focused upon making sure that we could continue to maintain the momentum we saw and research and development of life changing breakthroughs to help people to one day security one day preventing one day better treating one day, and that's what we're focused upon is maintaining research and mission momentum. We're not going to abandon any part of the United States. In fact, we hope to engage with more people. It's really just about how do we structure JDRF most efficiently in the face of not being able to get together for walks and galleries and the different fundraising events we do. So I'm an optimist by nature. So I'm optimistic that we have a lot of challenges in front of us with COVID. Still, but Gosh, when we do talk about research progress, you'll hear that there's so much excitement happening right now. And we we're doing everything we can to keep that going.
Stacey Simms 7:52
Well, let's just jump in and talk about it now tell us some of the research projects that are ongoing, that has not been affected by COVID. And in fundraising and things like that.
Yeah, I think the good news is research has progressed, even in the face of COVID. We we've monitored this, we fund research in the United States, of course, but we also fund research in 20 other countries, and depending on the country, depending on the lab, the state, we are seeing research be done. It's not perfect. It's not 100%. It's not pre COVID levels, but it's still good. And you know the way our mission accelerating life changing breakthroughs, to cure prevent better to to end on each of these fronts, we're seeing incredible progress. Of course, many of you know that I worked on artificial pancreas for a long time. My brother and I are using a control IQ systems, we looped for a long time, you look at control IQ, which was amazing FDA approval, which spun out of research that we funded with the team at UVA, the 770 G, and I'm proud to have funded some of the work that went into the hybrid cluster, but Medtronic, the Insulet system that's coming down the pike is some of the work we funded at UC Santa Barbara and now at Harvard. So you know, the devices, these better treatment options. You and I have talked about this. I mean, it's a pretty life changing. And um, I literally almost took a picture of my blood sugar this morning, because I was like, gosh, I never could have done that before. Yeah, and here I am, you know, cruising at 100 for seven straight hours overnight. Yeah,
Stacey Simms 9:26
as I've mentioned, I have a teenage son who were supposed to be in the throes of the worst years of type one and instead he has the best time and range, the lowest agency and the least amount of work he's ever done. And it's it's just amazing to me.
It's it's something I'm really really proud of and but some of your listeners might know that my brother has severe hypoglycemia problems. It was and started with diabetes when there was urine testing. And here we are now living a totally different life. And that is Yeah, of course, the JDRF was founded to cure to one date. And that's our number. That's our North Star. That's that's our number one goal. But in the meantime, I often said particularly back in the beginning of that project, when there was some controversy, if we should do it, we need to be healthy when there are cures. So the advancements that are happening on devices are awesome. And if we continue to push on that front, you may know that we have a big project with Tidepool bringing loop the DIY solution, through FDA in a Tidepool loop form, which will allow for a plug and play of sensors and algorithms and pumps, I'm really excited about that we have some projects and better infusion sets and faster insulin. So on the treatment side of the equation, JDRF is still focused there. What I would say though, is in the face of COVID, we realized that I don't want to say our work is through because we will continue to focus there. But there are a bunch of companies out there Medtronic Tandem Insulet, you name a title. So big foot, we realize that we can start to pass the baton, we have started to pass the baton on, on that work, and we're super excited is really on the work on preventing and curing to end to end cures. And we're gonna talk about why I pluralize that, because that's where the incredible action and it actually reminds me of the early days of the artificial pancreas project when people said, Oh, you've been hearing this forever. I've been hearing about an artificial pancreas for 35 years, you know, what's different now. And it was different. The science had moved the the the tech technologies had moved. And here we are now using hybrid closed loops. I see cell therapies and preventative therapies as being in a similar place. And I think the next coming years are going to be transformative on those fields.
Stacey Simms 11:52
All right, take us through a couple of those projects, if you could, because I'm with you. That sounds exciting.
Yeah. Okay, so the first thing I'll start with cures, we always say we're gonna find a cure. And I think when I talk about this, there is a skepticism because people have been, you know, there's always I was promised five years or 10 years. And why was that? And so I get into often when I when I talk and you know, I'm sure your listeners will have similar questions is, when, if you step back in time, and think about the JDRF in the 90s, the decade of a cure is what they called it. Why did they say that? And the reason was, the people were being cured, and they were being cured through islet transplantation. So many of your listeners have heard of islet transplantation, somebody dies, they donate organs, one of the organs of pancreas, people can now harvest cells out of the pancreas and transplant them into people via an injection, and it actually restores normal blood sugars. You've probably heard of the Edmonton protocol, Dr. James Shapiro JDRF, worked for a whip and continues for decades. If you meet somebody who's had an islet transplantation, they will tell you they are cured. They're a one sees completely normalized. They don't take insulin, they don't test they can eat, you know, food and don't have high blood sugars. The downside is they take chronic immunosuppressants, and it requires an organ which is a supply demand issue. We know any organ donation is either always big lists. So you know that this idea of I was promised something that wasn't real is not exactly accurate. We could cure people and in fact, I was with Dr. Shapiro last year, he has people who have been off insulin for 20 years with an islet transplant. So that shows that it's possible.
Stacey Simms 13:52
Right back to Aaron. He'll finish that thought in just a moment. But first diabetes Connections is brought to you by Gvoke Hypo Pen and almost everybody who takes insulin has experienced a low blood sugar and that can be scary, but a very low blood sugar is really scary. And that's where Gvoke hypo pen comes in. gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypo Pen is pre mixed and ready to go with a new visible needle. That means it's easy to use. How easy is it you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Aaron Kowalski talking about pure research.
And the reason I say cures is very similar to the you know the artificial pancreas work we did back in the day. I published a paper in I think 2008 and I said there is no single artificial pancreas. There are going to be a series of different solutions. Pump turns off insulin pump the proactively turns off insulin pump that lops off highs and lows, etc, and so forth and getting more and more sophisticated. And we call that the JDRF roadmap. Similarly, there's not going to be a single cure to type one, they're going to be multiple approaches. And that's where there's huge excitement because if you look at for example, there are multiple groups moving into human clinical trials of what I would call modern islet transplantation. Modern islet transplantation means enough cells for everybody, because now we're using stem cell derived eyelets, instead of what we would call calavera. Guy let somebody who passed away and donated their pancreas for so now via stem cell derived islets, you have an unlimited supply source. And it's not just one group that has an unlimited supply source. We have Harvard, Novo Nordisk University of British Columbia via sight, UCSF University of Sydney, there are multiple groups that can make stem cells into eyelids, that looks just like eyelids that came out of our person and can cure animals. So huge, huge advance. The other side of the equation is even a suppression. We have multiple approaches that are going to obviate the need for immunosuppressants. So this isn't getting real. I mean, this is violence and human clinical trials and seeing stem cell derived islet insulin production, these cells that are grown up in test tubes and petri dishes, transplanted into people now starting to make insulin. I was
Stacey Simms 16:33
just gonna ask those different groups that you mentioned, my first question was going to be what about human trials? So via sites in those are the other ones you mentioned moving in the next couple of years to human trials as well? Yeah.
Oh, yeah. I very much anticipate other companies being in human trials in 2021. Wow. And that is awesome. Because, again, if you think about the process, and you know, why was I promised five years? Well, the process for a small group of selected people worked. But the process for a big group of people wasn't ready for primetime. And we needed different approaches, we needed stem cells, we needed immuno protectants. And now here we are in 2020. It's a, you know, there's been a lot of science since 2000. And we're going to see human trials now happening more and more.
Stacey Simms 17:23
We're going to talk about kind of today, and fundraising issues and some criticism in just a moment. But I also want to address I'd love for you to talk as well, and you already mentioned this prevention, because when I hear about to come up, and I'm very excited that I now know how to pronounce it. You know, that's one study that seems to be ongoing, doesn't even finished yet, is it?
Well, there but you know, again, there are a number of these trials often happen in different stages and a patient population. So there, they've done some trials that have been very promising and they're ramping up and doing next gen trials.
Stacey Simms 17:57
Are there other prevention studies funded by JDRF, other than the one that I'm referring to, which is part of trial net, you know, Dennett USS,
oh, yeah, we are working across the board. I mean, we have a number of different groups that are using different drugs that slow the progression of type 1 diabetes. You may have heard of Verapamil, which is actually a beta solid agent. ATG Novo Nordisk was a big program, the preventing to end and it's interesting when I talked to the community about this, sometimes, people bristle a little bit and they're like, well, what's prevention gonna do for me, preventing to end in caring to end are interlinked? No cell therapies are one way I mentioned cures. So there are there going to be multiple ways. Ultimately, what we want to do is get beta cell functioning, they are our own beta cells going again. And to do that, you have to restore immune balance. So what when you talk about sip lism AB, which is an immunotherapy JDRF, funded way back to the original Studies at the University of Chicago. Now legendary scientists, Dr. Jeff bluestone and Dr. Kevin Herold, that drug is now owned by a company called prevention. And they're going to for FDA approval in the current data delays type one for at least three years, and probably we'll see even longer in a number of people. So we're looking at Temple lism ab, we're looking at a variety of different approaches. And I just really want to convey to the listeners that one, even if you have full blown type 1 diabetes, like my brother, I mean, this these advancements are hugely important for future cures for TMD because he can't share to you one day, you know, aside from an immuno protected stem cell, but if you want to do it, quote unquote, true qR lights, you know, you restore your body to what it used to be, you need to restore immune balance, and that's what these drugs are aiming to do. The other part that I think is really important to remember is Type One Diabetes is a genetic disease. You know, most people don't Understand that, unfortunately, that the risk for my kids is 15 times the general population, the next generation of people in our families, we need to stop this disease. And that's, that's the reason. So it's curing to one day, it's preventing the actually going,
Stacey Simms 20:18
there are gonna be people listening who say a genetic disease. We never had any type one in my family until my child was diagnosed until I was diagnosed. But it is obviously a very strong component, right?
Yes. So I the way I describe and answer that question, because it comes up, every single talk that I give, is just through math, the general population have about a four in 1000 chance of getting type 1 diabetes point 4% will get to end in the US, my kids have about a 5% chance of getting to five and 100 versus four and 1000. Now one of my good friends, Dr. Corey hood at Stanford, who's a psychologist, he says, Aaron, he's got to convey that the risk is that odds are 95% of its won't get it, even if you have a genetic risk, which is a glass half full, right and true. But just play that out from a Why didn't I have it in my family? So if five and 100, get it, you can say okay, insulin has been around for 100 years before that every single type one person died. So in your family, how many people are there in your first you know, your immediate family? And how many generations are there, you can just count, you know, so just say there are three kids and each generation, he may have like 12, nine to 12 kids. So if you see what I'm going here is the odds are even if you don't have the genetics, if you have the genetics, fortunately, most of the kids won't get it. But that's, you know, cold comfort to the ones who do like my brother, I was second. So I guess debate. And if you went back further, if we had through ability to look back in time and say, good kids die, pre 1921. In your family tree? The answer is almost certainly Yes. The kids died, because they didn't have the insulin to survive. So you know, five and 100, if you're a male with type one, three, and 100, if you're a female with type one for your kids, is, is elevated. And unfortunately, we're seeing the incidence of type one increasing for reasons we don't understand. So that's the simple kind of walking through the math that hopefully that makes sense. Because even if you don't have a family history, you probably do have a family history, you just don't know about it.
Stacey Simms 22:41
I'm gonna move on to some closing questions unless you want to focus anymore on research, or was there anything you wanted to mention?
Yeah, I think the only other piece that we didn't talk about is I mentioned Cori hood, and psycho social, you know, and this is really wasn't related to COVID, before COVID. But we're certainly seeing more challenges with the emotional side have to end. And I think a lot of people don't appreciate that JDRF is now as part of our program focused on psychosocial aspects of diabetes. Now, this is kind of the unspoken part of the disease that affects everybody. And and I just want to put it out there that after years of not funding research in these important areas, and my very strong opinion, we are, and we're funding fellowship to train up a number of new psychologists who specialize in issues, their take on specific funding research programs for kids and people who are really, really struggling with significantly higher one season decays, depression. That's one area that people don't often talk about. But I think every family goes through low points and some very, very low points. And that, put it out there that we're working and see this is an area that needs more attention. I think
Stacey Simms 23:56
that's great. You mentioned COVID, which is actually why we've been talking this whole time about it. Can I ask you a couple of COVID questions that we get all the time, you know, at the beginning of this year? There were so many worries about type one, there wasn't a lot of information that separated from type two, there's been a little bit more as the year has gone on. Can you talk a little bit about what you've learned about COVID? and type 1 diabetes? Is there new research information to say what it seems to have said to me from what I've seen is people with type one are not any more likely to get COVID. But of course, any illness will mess with your blood sugars, but it doesn't seem to be as severe as people with type two.
Yeah, that's the data. The challenge for us here in the us is we can't collect data as well as many other countries because many other countries can collect from every one of the citizens in the country and and then analyze it whereas our healthcare system doesn't work that way. So when we gather information, like you just described, it's often coming for example, that was there's a big study in England. Look at this. We've worked through a lot of the Scandinavian data. Australia. I think you're that what we're what I would say right now is we do think that people are type one have the same risk of getting COVID as anybody else, it's not increased. The big question, there's probably plenty that people with type one are probably at higher risk for worse outcomes. Type two people seem to be more and that may have to do with the increased weight and type two people. But again, the via more information, I think the big question on why would somebody with type one do worse and you brought up one of the potential issues is just blood sugar, we know that when when you're sick, your blood sugar is harder to manage. The treatments can exacerbate if you're on steroids, bad blood sugar, and that can contribute to infection problems. And particularly in COVID, I was literally on the phone with a person in the field yesterday, you know, one of the hypotheses is people would take one over time get vascular issues, we took on a higher degree of risk for heart attacks and strokes. And there's a fair amount of discussion about covid being you know, the impact on the back skillet. Sure. And that would then be exacerbated by P one d. So, you know, it's obviously for everybody. It's scary. It's scary. For me, it's scary for my brother and my family and my wife. And we urge people to be be extra cautious. You know, one of the things I heard in the beginning of the crisis is make sure you have a very tight plan. If God forbid, you have to go to the hospital, because one of the early readouts that I got in New York City, was the diabetes care was being delivered poorly to people because most if you're not an endocrinologist, most doctors don't see people with insulin frequently. And that can exacerbate, you know, again, blood sugar levels and side effects. So yeah, it's scary. We're learning a lot. I think we've seen improvements of treatments of people in the hospital. But I would urge caution for type one commodity, have a good plan, if you do get sick.
Stacey Simms 27:10
I'm sure in a few years, we'll have some very interesting research from the countries that do track more closely, like you said, and will know a lot more. Let me move into a different part of this interview. And I should, as you listen, just disclose that I was on the board have my local JDRF for six years. I am a financial supporter of JDRF. I think those are important things to know. But I am happy to pass along your questions. And I had some questions of my own. Aaron, I'm sure you were inundated with emails and suggestions earlier this year, and I sent you one and I know it wasn't alone in thinking this. My question was, and I'll eleska to you now, you know, I know how important JDRF research is, I really don't want it to stop. But you could see at the beginning of this year, the financial issue, the the unemployment issue, the economic problems that this country was going to experience. And it seemed to me like it might have been an opportunity for JDRF to pivot a little bit and give people who desperately need it some financial assistance, I assume that was discussed doing something with supplies, insulin, affordability, that sort of thing. But instead, you decided to continue to fund research. Can you tell us a little bit about that thought process and why obviously wasn't a viable option for JDRF?
Sure. So of course, this year has been brutal. As we lead off, it's been so hard for everybody. And at the beginning of the crisis, we knew that this was going to have a big impact on JDRF. Because we raised most of our money through events, when you can't get together for a walk or bike ride or a gala that that was going to cause us to not be able to fund as much research as we want to be decision. I there are a couple of interesting kind of pieces to your question. One is I think, you know, the decision to ask people for money, which was something that we talked a lot about, and our feeling was our mission to cure to end, prevent, improve lives didn't go away. And I put type 1 diabetes, the COVID didn't type one, obviously, that people are still struggling. And I can tell you, we've had a couple of deaths through gay a neighbor of mine, her son was just diagnosed last month. And this problem, our mission is still critical. So that this isn't to continue to ask people to support us was not to have people feel pressured when they couldn't if they've lost their job if they were struggling. But for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have and had going in March and in February and we were seeing across the board so that that was the logic on asking Money. It wasn't intended, again to pressure people it was intended for folks who could. And and I often said it wasn't mutually exclusive, supporting COVID. and supporting T one t are mutually exclusive. So the second part, and this, I think gets into some of our work in insulin access, and how much of our mission is focused on making sure people have access to care versus research. And the board and I have talked a lot about this, the JDRF mission is accelerating life changing breakthroughs to cure, prevent, and better treat TMD and its complications. So if you think about our work and insulin access, it's not our core mission. And people will criticize me or JDRF sometimes for that, but that's what it is. And when I look at other organizations like ADA, or for all or beyond type one, we have different missions. So we've talked to JDRF, about how much more Should we do. So for example, we have a we were doing a ton on policy on insulin access, we think it's critical. But if we were to shift and make that our mission, we would have to change everything we do, we would rearrange our staff, we would probably like a bunch of scientists, and we'd hire a bunch more policy people. So really, what what I think you're getting at is what is the mission of the organization. And our mission has been since 50 years ago, security one day, keep people healthy until we get there through the acceleration of life changing breakers. And that's my optic focus, we will continue to do some of the other critical work like insulin in Africa and developing nations or in the United States for people who can't afford it. I've testified on the hill three times as in front of the Senate and the House, my brother had to his wife had to switch jobs because he runs a small his own small company, and they had a like a $12,000 deductible. So I understand that said, are missing that, essentially outside the messenger apps. And while we do it, it's not the core mission.
Stacey Simms 32:12
If I could devil's advocate for a moment, though, you said earlier in this interview, that you got a lot of criticism and pushback for the artificial pancreas project. And your rationale for seeing it through was we need to keep people alive until there's a cure. When one in four people are rationing insulin in this country. I don't think you have to change your mission to focus more on insulin affordability. And I would even say, Is there no way and maybe Listen, I'm a bit of a pie eyed optimist, and I am not part of the inner workings of JDRF or these organizations. So you can tell me that this is silly. Is there no way to while you're fighting for affordability on the hill? And you're testifying? Is there no way for JDRF to do some kind of assistance program for those who most desperately need it?
Yeah, no, I hear you, Stacy. And we have looked at this. In fact, I rallied our team to look at and explore essentially insulin exchanges that would allow volunteers to donate insulin. And the challenges that we've faced, it have been really around the legal ease of donating a prescription drug. Again, this isn't our core mission. But I can tell you are in terms of our policy, time and effort and work, I would say it's pretty much our number one thing that we're working on, right, and looking at different ways to make sure and I've said it a million times, nobody should make the decision of food or rent or car payment or insulin insane. So it is a priority of ours even as it's outside of our what I would call the center of our Bullseye of our mission. We're devoting countless hours and dollars to try and to rectify and reconcile the problem. Yeah. And it's very, very frustrating to me. I hate that we're even having the discussion for that drug that is required for us to live. It's absurd.
Stacey Simms 34:06
Yeah, it's so interesting, Aaron to talk to you because you are not a and I mean this as a compliment. So let me get through the whole thing. You're not really a CEO kind of guy. Right? You are. You are the first CEO of JDRF. To live with type 1 diabetes. You are a scientist. your background is not in corporate politics. It is in science. You were obviously chief mission officer for a long time. I know you know what you're doing. So I don't mean it in this way. But I can't think of a more challenging year for somebody who is not a business school kind of guy, if that makes sense. Are you looking at this position? Are you still trying to approach it from a scientific viewpoint? Are you using skills that you didn't think you would have to bring to the table? I mean, I hope the the spirit of my question makes
sense. Yeah, no. And that was a big question when I applied when I started The board that I thought I could could be CEO is, well, you know, you're not a financial person or having run a big field organization, and what my response was, but I, I understand our community, I grew up in it, my brother and I and my brothers been doing it for 40 years, I haven't done it for 36 years or something, you know, work with the companies work with the community work with our partners. The beauty of, you know, JDRF is we are a volunteer driven organization. And I get to work with some of the smartest, most accomplished business people who volunteer their time, because their family's been impacted. So I've certainly benefited as a new CEO, from an I never a million years thought I'd be facing a pandemic, the first year, I took this job. But in terms of the areas that I wasn't as experienced in my team members of JDRF, who obviously have incredible capabilities. And then our volunteers, our board, we had a group on the board who helped us with the financials, the analyses, as we're going through the crisis, the people issues, the real estate issues. So just like you lean in and help, we're fortunate that we have so many volunteers who can help and I've taken a lot of those learnings and the experience they bring to the table to help I think Jeff become, I've always been proud of that we're a very efficient organization, and I think coming out of the Christmas will be even more efficient. My greatest strength, I think, is just my understanding of the disease, and the community, which I can bring to hopefully rally more people to support the mission.
Stacey Simms 36:43
This is airing during diabetes Awareness Month, which I personally think is a chance to educate people outside the community. I mean, we're all very much aware of diabetes all year round. So I'm curious, you know, what would your message be to people who are not in the diabetes community? What would you like them to know?
That's a really good question. Because I think, diabetes, you know, as many of the listeners know, diabetes, type one and type two get lumped together. People don't understand them. They don't understand their genetic, they think it's weight driven. And so there's a couple things. One is diabetes. type one and type two are a huge problem in this country in the world. And we need more people leaning into support better solutions. I mean, just think of the advancement of CGM. Now go back in time, and there was a big fight over CGM, you know, was this a useful tool? No, was it too much information? And here we are now, where it's becoming the standard of care, but it's taken a long time. And even in type two, it's still a good question mark, we need to deploy more resources. My very strong personal belief is we need to unite as a type one and type two community, you know, people with type one tend to, I hate to say it, but I kind of look down on type two people. And type two is a genetic disease even more strongly genetic than type one. People don't over eat themselves. And so type two diabetes, it's a huge myth to people with type two, a lot of overweight people that don't have type two, it's a genetic disease. It's a disease. So and the other interesting point not to get too off topic here is, is probably not just type one and type two, it's probably more of a continuum. Oh, sure. So this whole idea of eat, we are an under resourced community, whether you break it into type one, or type two or lump sum us together, we need more effort. And that's where I've talked to Tracy, the brown at ADA, beyond type one, our alliance with the type one, the Helmsley trust, you know, uniting and fighting for better solutions for people with diabetes. Now, if you're not in this community, you're paying, because a third of the Medicare budget goes to treat people with diabetes complications. So we need this country and to appreciate the diabetes are diseases that are genetic that need more resources, because there are solutions on the horizon that will help people and help our economy.
Stacey Simms 39:16
Yeah, I completely believe we are much stronger together. And it's amazing to me how much diabetes is it's like a joke to so many people. It's a hashtag, you know, here's my desert, hashtag diabetes, they don't get it. And we as a community, need to work together to continue to educate and fight those stereotypes and not add to them and not throw people with type two under the bus. So I won't get on my soapbox. But Aaron, thank you so much. And thank you so much for joining me and spending so much time with me and my listeners. I always appreciate
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:00
We hit a lot of topics in that interview, I will be happy to link up more information about JDRF research and other things that Aaron mentioned, you can always go to the episode homepage where there is a transcription, just go to Diabetes connections.com. Or if you're listening in a podcast app, you know, every single one of them is a little different. So I hesitate to say open it up there. But if you can see the show notes, if you can see the links, that's an easy place to but it's all on the website. If you have any trouble on any apps.
tell me something good coming up in just a moment. And I have some great news about the show to share with you. I'm so excited about this. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using the share and follow apps makes a big difference. And Benny and I set parameters about when I'm going to call him track him down, you know how long to wait, that sort of thing. It really helps us talk and worry about diabetes less. And if he's at a sleep over or away on a trip, it really gives me peace of mind. It also helps if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. The alerts and alarms that we set also help us keep the highs from getting too high and jump on loads before they are a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
longtime listeners will know that this is a labor of love. I have been doing Diabetes Connections weekly since June of 2015. I have a wonderful editor. Of course, I mentioned john at the end of every episode. But other than that, it's just me producing and hosting and booking guests and, and pre editing before I send it to john which drives him crazy. He says stop cleaning for the cleaning lady. But I can't help myself after a career in audio. And I say all that to bring you the news that we have hit a really tremendous milestone, and that is 1 million downloads and views. I am stunned. This number really sort of came out of the blue for me, because I know this may sound silly, but I can I can tell you we're close here, no secrets, I look at my podcast statistics with my hosting service liberated syndication or libsyn. And every show, you know, we look at the episodes and we look at the geography where people are listening and all that kind of stuff. And it keeps track of all of the downloads and unique listeners. And they're just really a wonderful and very accurate hosting service. So we ticked over more than 900,000 listeners. So I was kind of tracking to see when we hit a million. But then I realized that we have our YouTube channel as well. And while I cannot conceive of listening to a podcast via YouTube, because most of the time, it's just a static image. We have so many listeners over there, especially in the last two years. And sure enough, I clicked over there and we've had more than 100,000, listens views. What do you call it on YouTube, I'm going to say views. And that's why together, I'll say 1 million downloads and views.
I'm just so thrilled that I've been able to do this on a regular basis for so long with such terrific support from great listeners like you. And that number means a lot. That's a big one. So to celebrate, and this is great timing with diabetes Awareness Month because you deserve a reward for just living with diabetes or having somebody with diabetes in your family. We are going to be doing two different contests. Now these are going to start on the eighth. So that's a couple of days after this episode is released, you will get an email if you're on that newsletter. You will also see it in the Facebook group. Or if you follow me on Instagram, one contest on Instagram where I am Stacey Simms, and a different contest for people in the Facebook group. And the Facebook group is Diabetes Connections, the group so stay tuned for that, watch your email. If you are not already signed up for the newsletter. Like I said, click on the ebook link in this episode, or maybe you've seen the ads running in Facebook, or go to Diabetes connections.com the subscription thing should pop right up the newsletter subscription. But if it doesn't just scroll all the way to the bottom and it will have a little spot for you to sign up for the newsletter there. If you have any trouble just reach out to me Stacy at Diabetes connections.com. All right, here we go on to our second million downloads and listeners and views. Oh my goodness, I can't believe it. Thank you so much.
Next week, we will have a special episode for Veterans Day talking to a veteran who was diagnosed while in the service was able to stay in the service. This is only the second person I know has been able to do this. And then what he did and has done after and the accomplishments that he's made in real the change that he did. It's really an interesting story. And I'm excited to bring it to you and that is next week. Okay, thanks to my editor John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Have you seen your doctor remotely this year? Turns out that endocrinology is the number one specialty using telemedicine in 2020. We talk to Dr. Peter Alperin from Doximity about their recent study that says about 20% of all medical visits will be conducted via telemedicine this year. We also talk about what this means going forward, how to get the most of a visit when you can't be in person and why the heck doctors' offices still use fax machines!
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Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo-pen, the first pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
Hi, and welcome to another episode of our show. As this episode goes live, it is Election Day in the United States and we are not going to focus on that here. I am guessing many of you have actually found this episode in the days following its initial release. But whenever you are joining us I think this is a really interesting topic that you know many of us experienced for the first time this year. And that's telehealth.
If you are new to the show. I'm really glad you found us. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes. My son Benny was diagnosed when he was a toddler way back in 2006. He is now a sophomore in high school and we had one telehealth visit earlier this year. That was back in March, when everything started, we were able to go into the doctor's office for his summer and fall endocrinology appointments. I talked more about the experience, you know how it went some of the pitfalls that we ran into for that first telehealth appointment. And I do that in the interview.
Just a heads up this will be a shorter than usual episode is just the interview, we will have a regular episode with our segments with Tell me something good and all of that later this week.
For this episode, I am talking to the folks from Doximity. This is a professional medical network, sort of like LinkedIn for doctors. They had a study recently that said endocrinology is the specialty that uses telemedicine the most number one at everybody. And there are some interesting reasons why, of course remote or telehealth or whatever want to call it was huge earlier this year, it did peak around April or May. But there are some predictions that about 20% of all medical visits will still be conducted via telemedicine by the close of this year by the end of 2020. And that would represent about $29 billion worth of medical services. It is certainly worth watching.
So why endocrinology? What does this mean going forward? And why do doctors offices still use fax machines? Those are some of the questions I asked Dr. Pete Alperin, who joined us from Doximity. Dr. Alperin, thank you so much for joining me. I appreciate you spending some time with us today.
Dr. Peter Alperin
Thanks. Thank you so much for having me looking forward to it.
So a lot to unpack here with this study and why endocrinology but let me just back up first and ask you what is Doximity? What do you all do?
Dr. Peter Alperin 2:51
So Doximity is the largest online network of health professionals in the United States. And I think a great way to think about us is we're like a LinkedIn for healthcare professionals. We started off primarily with physicians, but we've expanded to include nurse practitioners, PhDs and a variety of other you know, healthcare professionals that range the gamut from, you know, optometrists, etc, to physical therapists and pharmacists and the like. We have over 70% of United States physicians have joined our network, and we have over, you know, 1.2 million members overall. And when I say it's like LinkedIn, you can think of it as LinkedIn, but tailored towards the healthcare professional. So we have a lot of features that are very specific to the needs of the people who work in the medical field. So we have HIPAA compliant communication, including faxing, we have our Doximity, dialer, video and audio products, which allow physicians to communicate easily securely and reliably with their patients. And then doctors can connect with each other much like you would on other social sites, and earn free continuing medical education. And they keep up on the latest Medical News. And we have a news feed, which is one of the biggest features on our site that allows the health care professionals to keep up on the latest and greatest in their particular fields, as well as just general information about the health care profession.
Stacey Simms 4:09
So one of the things that you've done with Doximity this year is well, I assume you do this every year is a state report, right? The 2020 state report and this is the state of telemedicine. I'm just curious, do you do that every year,
Dr. Peter Alperin 4:22
which is the second year that we've done this, and we've done studies in a variety of other areas. So we've done workforce studies, but we have a unique position in the market, being able to you know, call on the information and the opinions of like I mentioned over 70% of the US physician base and as a result, it gives us a really nice vantage point so that we can understand and really learn about these issues, particularly workforce issues.
Stacey Simms 4:48
So let's talk about the 2020 state of telemedicine report. And it's interesting because I have a great audience. I have a very smart audience but I also have an audience that is uniquely positioned to experience probably just as much if not more telehealth than anybody else in the country this year, so I'm really curious to hear these results because endocrinology was the number one specialty that utilizes telemedicine the most in that study, tell me a little bit more about that by number by percentage.
Dr. Peter Alperin 5:16
So it's by percentage, it probably isn't, it wouldn't be by numbers, mainly because there just aren't enough endocrinologist to make that a possibility. But the situation is that we surveyed, you know, 2000 of our physicians on our user base, and ask them a variety of different questions. And one of the things as you noted that that became clear was that endocrinology was one of the top professions it was the top profession, in terms of utilizing telehealth and it's that isn't surprising, mainly because endocrinologist take care of patients with diabetes, as well as other obviously, endocrine disorders, but it's a very chronic disease, heavy specialty and chronic disease is uniquely amenable to the telehealth platform, because patients with chronic disease need to be seen by their health care professionals on a longitudinal basis of you know, for many years forever. And it is something where you can have many light touches, so that you can have a dietitian who might touch the patient, the physician, you know, diabetes, education, and, you know, runs the gamut. And as a result, because endocrinologist obviously specialize and have more diabetes patients than the average doctor, it stands to reason that they would be the specialty that has been utilizing this the most. We've also noticed in our study, and you may have noticed this that chronic care visits were completed at a higher percentage on telehealth and other regular type visits, more acute care.
Stacey Simms 6:38
I'm curious, in the study, do you talk about the quality of these meetings because we've had telehealth this year, my son sees an endocrinologist, every quarter, we sometimes stretch it out, but we see every quarter. And we did one visit during this time that was remote, and it went fine. I had a little bit of you know, I have a we had a few issues, just getting some reports, it was fine. Did you talk about quality at all.
Dr. Peter Alperin 7:02
So the study didn't really dive into that I can tell you from personal experience, that you do need to learn how to do a telehealth visit, you need to prep your patients properly. And so it is very, very beneficial if you send patients at least the ones who have not had a visit before on using a telehealth platform to you know the different tips and tricks to be able to make that visit as ideal as possible. And then the physician themselves needs training to make sure that they understand how to interact, look at the camera, the variety of different things. So we didn't go into that in this study. But it is something that I know is important for all physicians and frankly, patients to have to kind of acclimate themselves to that communication platform.
Stacey Simms 7:46
Yeah, our biggest problem was the actual reports. My son uses an insulin pump, he uses a continuous glucose monitor, and they have separate reports that are you're able to get online. But you know, we had sent it or the office had called us. And here's the clarity report, login. Here's the T slim report, login. And then the doctor was online. He's like, nobody gave me anything. So I had to give him like my login while we were talking. It was really fun. We've known him for 14 years. So it was no big deal. But it was funny to have to. I think we were also his first visit that way. I'm sure it got better. But it was funny. You know, especially with diabetes, especially with type one, there can be so many technical things, if you're lucky enough to have access to the technology. Okay. Anyway, let's get back to the report. I know it's a little early to extrapolate, you know, from a report like this, but what do you think I mean, in on your network? Are physicians excited about telemedicine? Do they like it? Do they think it's going to continue?
Dr. Peter Alperin 8:38
So they do think it's going to continue? And I think they're excited as well. I think there was a little bit of trepidation in the beginning, because it was really thrust upon people. And I think there remains some unanswered questions. So let us sort of let me go into each of those. There's no question that telehealth is going to stay. I mean, we're the expectation is that there'll be $29 billion worth of telemedicine telemedicine visits by the end of 2020, and over 100 billion by the end of 2023. So this is something that is very, is absolutely not going to go away. And it's not going to go away because patients like it. And frankly, physicians are going to like it as well. The reasons that patients like it are is that it's it's quite convenient. And particularly for patients with chronic illness, or patients who have difficulty getting to the doctor's office, it can really be a lifeline. It's much easier to have additional visits over a telehealth platform and then have maybe a quarterly visit where the patient actually comes in to see you than it is to have that patient come to your office, you know, every few weeks, if I'm talking about patients who have you know, particularly brittle diabetes or you know, need to be seen on a more frequent basis for whatever particular reason. I think that if you look at the study, you know that it bears that out with the increase in the in the chronic care visits that you saw, and also just the satisfaction in general. Now, like I mentioned, there are a few kinks that need to continue to be worked out right now. As we noted in the study, the payments for these visits is not 100% certain going forward, although all indicators are that this is going to be made permanent. But you know, if I'm being accurate right now, CMS, for instance, is operating on waivers that allow you to build for the visit in the way that you would want to be able to all as I mentioned, all indicators are that's going to be made permanent. That's probably the biggest sort of thing that remains to be worked out. But private payers seem to be following suit as well.
Stacey Simms 10:27
Now, you're an internist. You're not an endocrinologist, but I know you've seen patients, people with diabetes. I'm curious what you think about the missing element of telehealth, especially as it pertains to chronic condition like this. And that's the person that's the in person relationship. And as a parent of a child with type one, as a wife of a husband with type two, the personal relationship that they have with their separate physicians is so important to their care. And well, I think telehealth is great, I would hate to see it take over. Right I really my my son, I were talking about this, and he felt the visit was worthless. It was not we actually made it he's 15. He thinks a lot of things are worthless. But we made basal rate changes, we checked in on certain things. But then when we were able to go back to the office over the summer, he thought it was a much better visit. I don't know from where I stood there was wasn't as dramatic a difference as he indicated. But I think he had a lot to say about it. I'm curious, from your perspective, as the physician, what you think about that,
Dr. Peter Alperin 11:27
you know, I think that there's never going to be a substitute for an in person visit full stop. But that said, I think it's like all pieces of technology, the key is finding the right place to use it. Because it's not about the technology. It's about the physician patient conversation and the care that you're delivering. And so the best technology is invisible, right, it disappears. And so that you really it's about that connection that you have. I think that like we talked about in your previous question, there does need to be some acclamation on the part of the patient and the physician in terms of getting used to this. But I still strongly believe that the overwhelming I guess you would call it, the fundamentals of it are really just on the side of telemedicine, it's efficient, you have the ability to touch more patients. Now, one thing that I've thought about is that a telemedicine visit is always easier with a patient that you already know. Yeah. So that's also another reason why I think that in the realm of chronic care which diabetes is squarely in the middle of, you're going to need to have that initial visit with the patient in person. But over time, having a phone call or a video visit is actually fine. Because you know, the patient and the patient knows you, it is a little trickier for an acute care visit, it's just a little bit the physical exam is a little bit more difficult. Obviously, in patients with chronic disease, you don't need to do a full physical exam with every single visit it really, you know, it obviously depends on why they're there and what their particular symptoms are. So I do agree that the inpatient visit will never go away, and, frankly, is probably a more satisfying visit, because I think humans are social creatures, and they really like that connection. But that doesn't mean that the telemedicine is somehow you know, inferior, or it doesn't mean that at all. And it also doesn't mean that that it's not going to stay, it's just going to have to be used in the right circumstance.
Stacey Simms 13:11
I hope they keep it in our local office, I think we could see switching our for yearly visits to to in person and to via computer, it was just you know, it's also a 45 minute drive. Yeah, it's a nice step to heart and you have,
Dr. Peter Alperin 13:25
obviously in a time of a pandemic, you are running the risk of infection of other people. And obviously patients with diabetes, many of whom are older, the run the risk of getting that infection are at higher risk of covid. And the whole nine yards. And the other thing is, is that you know, even when the pandemic is ending, let's fast forward, you know, a couple years, I still think it's going to be very beneficial for patients, particularly patients who don't have, you know, the means to come to the office that easily. So it's important to consider that as well.
Stacey Simms 13:54
I'm curious to one of the things that our doctor talked about was trying and this was way at the beginning, he was trying to figure out how to help patients do the kind of physical exam that he does in the office. In other words, looking at fingertips to make sure that you know, they're not poking the same finger or they're, you know, the fingers are doing okay for blood sugar checks, checking the sites, where a pump inset would go and teaching patients how to kind of do a self check, which a lot of people have never thought to do with diabetes. I haven't checked in with him because as I said, we went back in person and I know they're doing in person visits now. But I'm curious if things like that have come up maybe even in other practices in some of the chats and conversations that you've seen.
Dr. Peter Alperin 14:36
Yeah, I mean, both personal experience and then, you know, being at duck somebody I have a unique vantage point on the conversations that occur on our newsfeed where you'll see the you know, the the chatter back and forth about a particular article. The answer is there are great many things that you can do to help with the physical exam and this gets back to again, you know, having the patient be properly prepped, if you will, for that visit. So that they're in a comfortable seat so that there's good lighting, that they have loose fitting clothing, that they're aware of the things that you might do so that they have also, you know, the proper undergarments. So depending upon what the physical exam might be, but there are certain things you can't do like it's very difficult to palpate and do an abdominal exam right over the phone. And it's just it's a tricky part of the any, any physician will tell you, the abdominal exam has always been one of the trickier parts of any exam. It's also hard to listen to lungs, if you will, over the phone. But there are some things you can do. For instance, if a patient's complaining of abdominal pain you and they and their mobile, you can ask them to sort of maybe jump up and down and see whether or not that hurts, because really what you're looking for is a sudden jar, far from the exam that all of us learned in medical school, and probably far from the same level of sensitivity and the ability to diagnose things, but it certainly can help. But that's where the importance of triage comes in. And that's why having a front office that can understand when a patient needs to come into the office versus not come into the office is important.
And look, I've converted telehealth exams to in person ones where I've said at the end of the conversation, you know, this was great, but I think I still need to learn more, why don't you call the office and find out if there's a time you can come in in the next week, then that kind of thing. You know, it is being taken up by physicians of all ages. And I think that was a really interesting finding that, you know, typically technology is always adopted more more quickly, among younger people just across the board. Here's a case where that's not true, where it's physicians in their 40s and 50s, who are actually taking to telemedicine more quickly than physicians in their 30s, then one of the reasons that we think that that's true, is that physicians in the 40s and 50s are the busy physicians are the ones who see the, I hesitate to say in this in the those salad years of their life where they're raising families, and they have, you know, mortgage payments and life. And so they're working more, I also perhaps think that their practices are bigger, they're more comfortable with their patient base. And it takes a certain level of comfort, like we talked about with your patient panel, and the folks that you're caring for to have a telemedicine visit be just the most optimal thing that can be again, not that you can't do it when you're a younger physician. But when you're just starting out, you don't know quite as much. If you ask any physician, they'll tell you that the amount of learning that they did in their first three years after their residency training is just absolutely the most because that's when you can't turn to anybody else and say, hey, what should what would you do about this? It's your The buck stops with you. So you learn a tremendous amount when that happens.
Stacey Simms 17:29
You heard me laugh a little bit, because when you said older physicians, I was expecting you to say physicians in their 60s, perhaps even into their 70s I did not expect you to say physician 40s and 50s. I know, we're all well, you know,
Dr. Peter Alperin 17:44
it's a good point, you know, half of all US physicians are you know, over 50. And, you know, there's a probably a big wave coming of physicians or, you know, start to cut back.
Stacey Simms 17:56
Well, someone as someone who is pushing toward 50 very rapidly. I'm not happy to hear the older term being used.
Dr. Peter Alperin 18:02
I'm over 50. So it
Stacey Simms 18:05
is what it is. Hey, before I let you go, one of the very first things you said I made a note to come back to you were talking about Doximity and your type of the things that everybody can do. And then and you mentioned fax machines.
Unknown Speaker 18:18
Stacey Simms 18:19
It says nothing to do with anything we've talked about. But I have to ask you, why are American doctors in our health care system still using fax machines? When nobody has been at home? nobody uses the technology anymore.
Dr. Peter Alperin 18:32
I mean, why? It's a fantastic question. And it has its roots. It's really it comes down to two things, but it has its roots in the HIPAA law. So most people on I imagine in your audience are familiar with HIPAA. A lot. Most people are familiar with it. But so that's the primary piece of federal legislation that governs patient privacy, it also governs communication. And when HIPAA was written in the late 90s, or mid to late 90s, the fax machine was ubiquitous. I mean, that was 25 years ago, but the fax machine was grandfathered. And therefore if I send a fax to another physician, or anybody that the communications and the security around that is just handled differently, legally, and there's more protections for it. So that's the first thing. So that's why faxes never went away. And then at the same time as electronic health records came about, and, you know, email became the primary sort of medium of communication that was not covered. And therefore there's all sorts of security protocols that need to happen. You need to use secure email and there's patient information. And because of those security issues, it's an a patchwork just to quilt of rules and regulations. physicians have just stuck with the fax machine because it's in every physician's office, and now it's on every physician's phone. It was the very first feature we created because it's the thing that positions us. I mean, I fax something this weekend, the sending orders to a nursing home for a patient who needed some medication changes and so from your phone from my phone And so that's what we offer on doximity is that ability to fax, receive, send sign and send it. So I never touch a piece of paper per se. But it all happens over a fax protocol. And that's actually what a lot of physicians do. So it's not always when you hear fax machine, it's still a ton of paper. But a lot of physicians have moved to E fax. So you see that as well. And I
Stacey Simms 20:19
guess as patients, we can do that, too. I had an effects account for a while, but I only used it for doctors. Exactly. I
Dr. Peter Alperin 20:25
know. It's a very interesting thing. And there you go.
Stacey Simms 20:30
I know you weren't expecting to talk about that. But it is
Dr. Peter Alperin 20:33
a great question. You know, we still have a huge number of our users who who use our fax machine. And it's the kind of thing that even if you're not a heavy fax user, you still need to have one because you need to be able to receive information from other physicians.
Stacey Simms 20:44
Well, Dr. Alperin, thank you so much for joining me, this was really interesting. And I hope you can come back maybe and let us know other things that you find in Doximity that are of interest to people with diabetes. Thank you so much.
Dr. Peter Alperin 20:54
Thank you so much for having us. It's an important study. It's an important time in medicine, and we appreciate you helping us get the message out.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 21:12
You can read that study from Doximity and some other information. I will link it all up on the episode homepage as usual at Diabetes connections.com. There's always a transcript for every episode in 2020. And we're starting to go back and fill those in for previous years as well. I'm asking in the Facebook group if you went to a telehealth or remote visit this year, and if so, would you do it again? I definitely would as you heard me say, you know Benny wasn't crazy about it. That's because he likes he's driving now he likes to drive down to the office he likes to see and be seen and he has a great relationship with our endo but I really think if we can get away with it we have to see the four times a year although I stretch it out probably like most of you so it's really three times a year just you know, you know you can work that calendar, but I think we could probably get away with one or two remotely and with Dexcom I don't need an A1C from him all the time. You can see the estimate, but we'll see how it goes. love to know what you think.
Thank you to my editor John Bukenas from audio editing solutions. Thank you for listening. We will be back in just a couple of days with a regular length episode with all the segments. I am doing a bit of a state of state with JDRF with Aaron Kowalski, who is the CEO of JDRF wanted to get his take on this really unusual year, what research is going to be stopped or or held up or even everything's going to progress but nothing is as normal with JDRF or anything else. And it was really interesting to talk to him and also let him respond to some of the criticism from the community that JDRF has been hearing recently. That will follow in just a couple of days, likely Thursday of this week. Until then, I'm Stacey Simms. Be kind to yourself.
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