2. JDRF and the T1D community have evolved. More adults with T1D are leading and along with cures, prevention is a priority.
Rob Howe: “It’s interesting to see the adoption of leading with and opening with, ‘Hey, I’m a person with diabetes.’ That’s something that for the first 10 years of my life with diabetes, I was uncomfortable doing. I didn’t want to be known as a diabetic athlete or a diabetic business-person. I wanted to just be known as just an athlete or just a business-person…. There really is a community movement of people with diabetes who are embracing who they are and pouring that back into helping people with diabetes and the future generations.”
Aaron Kowalski: “This organization was founded by two moms…. I feel like parents carried the weight for the first essentially five decades of this organization…. My parents have done so much for me and my brother over the years and supported JDRF….”
“But the thing that makes me proud is we’re getting more people like you. Like me. Like my brother, who was on the chapter board here in New Jersey. We are getting more of the type 1 people involved.”
“Here, now, is the wave of type 1 people leading it. It provides a different perspective…. We are getting more people with type 1 on the board, more type 1 Young Leadership Groups, volunteers, riders, because ultimately our name is JDRF—Juvenile Diabetes—but it’s type 1. Fifty percent of people being diagnosed are above the age of 30 right now. It just shows you the evolution of this disease.”
“A lot of people with type 1—for all sorts of reasons—didn’t want to be associated with their type 1 or didn’t want it to be out in front. Or they didn’t want people to think differently of them.”
“A lot of type 1 folks—whom I’ve met at least—they internalize their T1D and they sometimes don’t share it. I certainly didn’t at first. They may see it as, ‘I’m the only one in my family,’ but they don’t appreciate that it’s actually genetic.”
“One of my other real points of pride at JDRF is how much progress we are making on prevention of T1D. And I often say to people that I meet who say they don’t want to get involved because they don’t want to focus on their T1D as it is their thing, that ‘It’s actually your kids’ thing, it’s your siblings’ kids’ thing.’ The genetic risk is for you and me for our kids, is actually 15-times the general population. Now fortunately, the risk is low in the general population, but it’s elevated. And unfortunately T1D is increasing right now across the globe for reasons we are trying to explain.”
“The community leaning in—I think there’s a responsibility to lean in because the next generation is at risk. And that’s what we want to stop. We don’t want them to join the club. It’s a club we want no more members of.”
3. Life with T1D in the 1970s and 1980s was very different.
Rob Howe: “Something that always gives me a lot of hope and a lot of encouragement especially when I’m having a bad day is that I look at people like you and your brother who were diagnosed in 1977 when technology CGMS even pumps were a wave of the future they were not available. But you’re the CEO of JDRF you have lived the life that me as a young person or someone with diabetes can look at and say, ‘Hey, this is possible for me.’ What do you remember about those early days and those challenges living with diabetes?”
Aaron Kowalski: “It was a very different time. And I know there’s no good time. Like today is not a good time. I know a number of folks diagnosed over the last few weeks and it just breaks my heart.”
“But it is better…. And back then there was no blood sugar testing…. Back then we tested on a color-based strip when I was diagnosed…. There was cow and pig insulin.”
“But you know coming to today. The one thing that I always say to people is the best advice my parents gave my brother and me—I’ve said this a million times but I think it’s so appropriate—is, ‘You’ll do anything your friends do, and more.’”
“And it may be harder, and it certainly was harder. My brother doesn’t sense hypo well. He had seizures, a lot of severe lows. But played varsity sports, traveled abroad. I’ve run 20 marathons. He does the 100 mile JDRF rides. He’s 43 years into it and he’s—knock on wood—healthy.”
“I tweet out #T1Dnolimits and I do that because I think it’s super hard, but you’ve got to get at it in the face of the challenge that is type 1.”
Rob Howe: “It’s good to address that there are challenges as well. A lot of times we look at somebody who is a high level athlete or somebody who has achieved an awesome achievement in sports…. These are amazing people living with diabetes…. Sometimes it’s like, ‘Am I doing something wrong because I’m not achieving at that level?’ …The biggest thing for me is, even if you’re just waking up and getting to school on time, or taking the kids and getting the kids to school or making it to work or making it through a Zoom meeting while treating a hypo, those are huge victories to me as well. Those challenges exist and your ability to be a T1D champion through those is super important.”
4. Advocacy is crucial to accomplishing the mission: somebody with T1D doing better.
Rob Howe: “I’d like to talk about a specific moment…. It was for your speech to the Senate Judiciary Committee. What was it like for you—even outside your role as CEO of JDRF—to be the voice for people with diabetes on such a large scale on such important issues, such as insulin affordability and what can you share about JDRF’s continued work on affordable insulin?”
Aaron Kowalski: “These moments—I often say to my wife, ‘How did I get here?’ But I do feel that I have a good sense of the voice, having spent so many years now at JDRF and speaking to so many people. Living it. Seeing my brother who runs a small company and is impacted by high deductibles. Affordable insulin. And hearing the stories of folks who are unable to afford treatment.”
“So getting up there is nerve-wracking, but I’ve worked on the Hill now on our policy team for many years and I guess have a good sense of what needs to happen. We NEED loud voices. We NEED to put our agenda out there, because it’s very, very important.”
“Getting up and advocating—whether it’s for affordable insulin, funding of research, the right policies to protect people with diabetes—is a CRITICAL thing to do. And we are very, very fortunate that we have an amazing team in DC. Many people think of JDRF they think of research, but we put together a world-class policy team focused on legislative policy like funding of research, like insulin affordability laws.”
“A HUGE point of pride of mine is the work we did to fight Medicare for access of CGM for the Medicare population. We spent probably upwards of $10 million and almost 5 years fighting that fight. And when you’re successful, people benefit.”
“And that to me is what JDRF is about. JDRF research is not the end. It’s a means to the end. Advocacy is a means to the end. But the end is somebody doing better.”
“Being able to afford insulin. Not having to sweat ‘Can I pay my rent or my car payment?’ Having research tax dollars go to diabetes research. But people then achieving a closed-loop system or a CGM. I have no problem giving my opinion but hopefully productively…. It’s a critical thing…. Because right now, we’re seeing insulin—we’ve worked with the manufacturers—where the prices during COVID have come down. We need them to stay that way”.
“And we’re going to need to keep pushing. And there will be other issues that come up. So advocacy is a critical component of what JDRF does.”
5. Unity among the T1D community—including peer organizations such as JDRF and Beyond Type 1—is invaluable.
Rob Howe: “I want to talk a little bit about the Beyond Type 1 and JDRF alliance…. For me, having the conversations late last year with Thom Scher from Beyond Type 1 [President and CEO] about the work that you guys were doing behind the scenes that had not yet been announced, really made me happy…. When people see organizations [that exist in a similar space], they think competition right off the bat. And to see them working together very publicly—we’re sitting under the JDRF – Beyond Type 1 alliance in this conversation—seeing the way that has united and broken down the barrier [shows] we are all working together for the same thing: to help people diabetes. So, talk a little bit about how that came to be and why it’s so important for the organizations to work together publicly.”
Aaron Kowalski: “I love this partnership and working with Thom and the Beyond Type 1 team. The short version is, one of the things that the board members I work with at JDRF, who are experienced business people and have a lot of work experience, will talk to me about is, ‘If you’re running a company, you need to know what you do well, and what don’t you do.’ I think a lot of folks want to do everything. You can’t.”
“So this idea of competition…. If we don’t find a cure, or we aren’t funding it, I hope somebody else does! That’s not the point. The point is how do we fit together and what do we do as an organization JDRF, and how can we support others who do things that we don’t do?”
“The missions of JDRF and Beyond Type 1 are incredibly aligned. Our mission accelerating life-changing breakthroughs, the way that we interpret that and we put that together is working the pipeline—meaning funding research and advocating [for treatments, cures, and prevention to reach the hands of people living with T1D]. Beyond Type 1 is inspiring people. It’s driving a community. It’s a different but very aligned mission. And Beyond Type 1 is not funding research—they’re advocating [for people to] participate in research. Do clinical trials.”
“So what happened here is a perfect dovetailing of aligned missions to support our work, our supporting the Beyond Type 1 work, and uniting as a community. And that’s what it’s all about to me…. The alignment just amplifies all of our voices to get at the problems that we’re trying to address and help people.”