Beyond Type 1's Thom Scher and JDRF's Aaron Kowalski

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What happens when two huge diabetes organizations decide to work together? We’re all about to find out. Stacey talks to the CEOs of JDRF & Beyond Type 1 about their newly announced “alliance.”

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JDRF’s Aaron Kowalski and Beyond Type 1’s Thom Scher join Stacey for a talk about why these groups came together and what that means for the diabetes community.

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Partial transcript of the episode:

Stacey: Can you talk a little bit about the story behind [the alliance]?

Thom: I think that both JDRF and Beyond Type 1 are strong and important in this space. Aaron and I sat down and it was very clear that there were areas of overlap in the middle of the Venn diagram of sorts where we realized that working together, and this sounds a little cheesy, but where it really would be 1+1=3… And the minute we identified that list of things, it just became very clear that we were stronger together on a handful of these initiatives.


I also think, and this certainly isn’t something that our organizations were trying to do, but inevitably I think that we, people in the community sometimes feel like they had to pick, and that’s silly. We’re all in this together. We’re all fighting to improve the lives of people impacted by diabetes. I think JDRF and Beyond Type 1 saw that and saw that we were able to really work together and build something robust and official that allows both organizations to now go out and do these things together.


Is this a merger? You’ve talked about eliminating some redundancies – can you speak to that?

Aaron: We’re going to stay independent organizations, but it is reducing redundancies and building on what one another do well. From my perspective, when I took on the CEO role of JDRF, I talked to the board about a couple of key things. One is: what is JDRF really good at? I think we’re really good at funding research. We fund more research than anybody but the U.S. government. We’ve been successful at advocacy, and our mission has really been improving lives and curing Type 1 diabetes. Beyond Type 1 has been an incredible force in uniting our community… Beyond Type 1 has engaged with the adult community certainly better than we have.


What is the latest from JDRF in terms of pushing for insulin affordability?

Aaron: This is one of our top advocacy issues that we’re dealing with now. I’ve said this multiple times, I’ve testified on the Hill three times on this topic. No one should suffer or die for lack of insulin. And what we have in the United States is a shameful situation. JDRF is fully committed that nobody should have to choose between rent or a car payment or insulin. So we’ve been working on a number of fronts with the payer community, with Congress, looking at people who are under or uninsured, and looking at every remedy possible. I can tell you that working with Beyond Type 1, I think we’re going to be a be able to amplify this message. To me, it’s of course about amplifying the message, but it’s about driving towards solutions.


Thom: I’ll build off of that. I think we certainly are looking forward to working with JDRF to be more impactful in this arena of bringing more patient voices into the conversation, certainly at a federal level. I think our perspective at Beyond Type 1 on this is that we need to look for a pragmatic solution. And on top of those pragmatic solutions, we need to be ensuring that we are providing resources every day to people who are in need of insulin. And so some of those pragmatics take the form of actual policy matters be it first dollar coverage or Kevin’s Law. Some of the resource components have to do with ensuring that, for example, people who are uninsured know what assistance programs are available to them, they know how to get to them, they know that with them they will have coverage. There are robust programs in particular for that population. It’s that the barriers to entry are too high. So we’re really committed to building out our advocacy forum of Beyond Type 1 over the course of the next year.


This alliance was a big part of that because we now get to work with JDRF, a leading organization on that front, leveraging their expertise and bringing it into our community, and that’s a stepping stone for us to take more meaningful steps.


Did you know each other before you started talking about this?

Thom: I consider Aaron a friend, and a colleague, and I love working with him. I don’t think Aaron and I knew each other all that well when we each respectively took over as CEOs, though I certainly knew of Aaron and respected Aaron. I think Aaron and I over series of conversations in person and by phone have definitely gotten closer. I feel really lucky to call Aaron a friend now. I think that certainly informed some of the creation of the alliance. It was Aaron and I being able to really sit down and talk at a high level, everything on the table, how can we work together? That came from a place, at least on my end of [inaudible 00:11:59] Aaron’s vision and a belief that him and I were going to be able to work together and so would our teams. So no, we were not necessarily friends before this, but I certainly consider us friends today.


Aaron: Thom came down to the JDRF office in New York City and we sat down and talked, and really, it was quite clear that we were so aligned in where we were trying to take both of these organizations. So we hadn’t met before that and here we are. We took this selfie, and now today in October 2019 I think Thom is a great diabetes friend, and friend just the overall. I always love seeing, we love seeing one another. I mean it’s funny. Diabetes is one of those places I always call it the club that we want no more members of, but you find amazing people who are in this club unfortunately. Thom is just one of those amazing people whose leaned in, he’s just such a joy to work with, and we are going to do amazing things together. I’m just so fortunate that now that we have this bond.

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