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.
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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
- Oh, it’s wonderful to speak with you and thanks, everybody. Hope to talk again soon.
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