For the first time ever, the JDRF has a new Chief Executive Officer who lives with type 1 diabetes himself and has been an instrumental leader within the organization for more than a decade. Dr. Aaron Kowalski becomes the new CEO, taking over for D-Dad Derek Rapp, who announced in October that he would be stepping down.

This is big news and a huge win for all of us in the D-Community, Folks! Not only because Aaron is "one of us" in the pancreatically-challenged tribe, but also because he's highly respected among the patient and healthcare communities, med-tech industry, and regulatory and policy spaces. He's seen as a powerful advocate and "game-changer" who brings a personal D-connection and passion to everything he does.

Diagnosed at age 13 in 1984, Aaron was the second in his family to be diagnosed, after his younger brother Steve had been diagnosed several years earlier at age 3.

Notably, this means that the country’s two biggest diabetes orgs -- the JDRF and the American Diabetes Association (ADA) – now have PWDs (people with diabetes) at the helm, as the new CEO of ADA Tracey Brown appointed last year is the first to live with type 2 diabetes herself.

"I'm humbled to lead the JDRF, the organization that's played such a key role in so many of the major T1D advances in recent history and that my brother and I have seen throughout our lives," the 47-year-old told DiabetesMine in his first phone interview following the April 9 announcement.

In that interview, Aaron shared his vision on a number of fronts:

Aaron is the 6th person to hold the CEO role (and the first-ever living with T1D himself!) since it was established as the Juvenile Diabetes Foundation (JDF) in 1970. He’ll now be overseeing an organization with a $208 million-dollar budget, and roughly 700 staff members in more than 70 chapters across the country -- not to mention the countless volunteers who work with the org regularly. He'll also join the JDRF's Board of Directors as well as the JDRF T1D Fund, a venture philanthropic fund aimed at speeding up type 1 diabetes research and getting new tools to market.

 

A History of Diabetes Leadership

Aaron has been with the JDRF in 2004, when he began his career there as a Scientific Program Manager (based on his doctorate in microbiology and molecular genetics from Rutgers University) with a focus on complications, and hypoglycemia research. Soon after, he became Head of Metabolic Control, and eventually moved up the ranks to Director of Strategic Research a decade ago, before eventually being named the JDRF's first Chief Mission Officer in 2014 where he became the org's leading T1D research voice.

Notably, he was an early advocate of CGM (continuous glucose monitoring) technology and closed loop systems, and in 2006 helped create the JDRF's Artificial Pancreas Program along with former CEO and D-Dad Jeffrey Brewer (who was Rapp's predecessor and has since gone on to co-found automated insulin delivery startup Bigfoot Biomedical). Over the years, Aaron has had a pivotal role in pushing for advanced technology, open-source protocols and efforts to move beyond A1C outcomes in clinical research, more efficient regulatory reviews and improved policy-making.

Recently Aaron's been making appearances on Capitol Hill, testifying before a Congressional committee about skyrocketing insulin prices. That's of course tied in with JDRF's work advocating on this issue, including its #Coverage2Control campaign focused on the payor (insurance) side of things. In fact, Aaron has been a policy leader for many years talking to Congress, the U.S. Health and Human Services (HHS) department and the FDA, as well as numerous other national and global authorities.

Besides his impressive resume, Aaron also serves as an inspiration in his personal life with T1D: he's an avid runner, who's completed 18 marathons (including a Boston Marathon qualifying time), one 50K trail marathon, and numerous shorter races. He also loves to play golf and ice hockey and does so as regularly as possible, we're told.

Those in the community say he’s uniquely fit to lead JDRF, as he understands the needs and potential of T1D research and advocacy “like almost no one else.”  Now, without further ado, here’s our recent full interview with Aaron on this new CEO role…

 

Talking with Aaron Kowalski, New CEO of JDRF

DM) Congrats, Aaron! First, can you tell us why you wanted to take on this new role?

AK) Ultimately, I felt it came down to my experience through JDRF and working on the inside, seeing the potential and real impacts we’re making, but knowing we could do more. That’s really why I threw my name into the hat.

There are a lot of people on the sidelines who don't know what we do, or have the resources... so bringing that T1D lens myself, that science and family member and other roles I've had, was something I thought JDRF could benefit from.

How did the CEO selection procedure go?

I went through a process the Board of Directors put in place and it was helpful to think more about the value proposition I could bring to the table. It wasn’t just handed to me, and it made this a credible process, and I’m so excited they chose me!

Is it really so significant to have someone living with T1D in the head role, compared to a parent perspective as JDRF has had before?

Of course, JDRF was built by parents and that’s amazing. I look over at a picture of my parents with my sister and I doing a New York City walk, and know how much they did for us to help my brother and I be healthy and successful with diabetes. They moved mountains.

That said, from my perspective, the individual with T1D has different experiences. We live it in everything we do. I can click on my phone app to check my blood sugars right now after this crazy day, and tell you… well, it was 280 and now it’s 190 and dropping rapidly (after a correction dose that may have been too much). I am living the highs and the lows, literally... the grind, the exhaustion, and that will help determining if JDRF does something that will be impactful in our lives.

Overall, you have to appreciate people’s experiences and be a good listener. I’ve done that over the years, and now as CEO I’m sensitive to what the Diabetes Community is looking for from JDRF and will try to make sure we’re meeting their needs.

What do you see as the keys to keeping people with T1D motivated to live well?

Of course, everyone’s experiences are different. And it’s always changing. My motivation when starting out in science was usually my brother, because he had such trouble managing with hypo unawareness. But that’s evolved, and today my motivations are a lot more about my own kids, my siblings’ kids, my brother, my own mortality to make sure I’m here, and all the different parts of the community through the people I’ve met over the years all over the world.

That all translates to what we say at JDRF about representing all ages and all stages. People with diabetes evolve into different stages through their lives, and what I bring to the table is a pretty good perspective on a lot of those stages. Many count on JDRF and the Diabetes Community to help their loved ones.

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Aaron (left) and Steve Kowalski

Think back on how far we’ve come since you started at JDRF: what’s the most striking change to you?

I vividly remember going to a meeting early on where diabetes devices were being investigated in the pediatric population. At that time, I met legends in diabetes – Drs. Bill Tamborlane, Bruce Buckingham, Peter Chase, Roy Beck, and more – and saw the Abbott Navigator CGM for the first time. Before then, I had no idea that would happen didn’t even know CGMs existed because I was in the metabolic science arena. And I was blown away that one of them was just around the corner.

That really changed my perspective, and catalyzed with Jeffrey Brewer and the Artificial Pancreas Project a couple years later. Fast forward to now: I was just at a recent summit with 300 people with diabetes in the room and heard people say, “I don’t poke my finger anymore. I wake up at a normal number. I can see my blood sugars when I’m out with friends.” That’s really a great part of my job in being able to hear that.

What’s your most immediate priority for JDRF?

I will start with adults with type 1 diabetes. If you look at the stats on PWDs with T1D, more than 85% are adults. Yet, we don’t have as many involved and pushing as hard as say parents do. I think we can do more. If we had more actively involved adult T1s pitching in, we would be moving faster on all fronts – research, advocacy, awareness, funding, federal policy and global issues. And that area of global T1D efforts is another one where I think we at JDRF can do more.

One common concern about JDRF is finding the right balance between prioritizing cure research and developing new treatments or tools. How will you address that?

I hear that often. One person recently asked me: “What’s the hardest part of your job?” I responded that it comes back to that life stages and priorities point. Depending on where you fall in that T1 stage of life, it can vary quite a bit. Some people emphasize we need to push harder on diabetes complications. Others want us to push harder on cures, or on prevention, or access issues, or psychosocial aspects of living with diabetes.

What it adds up to is how we go about doing what we do. When we fund anything, we need to figure out the proper balance and best opportunities for impact. We’re one of the biggest funders of T1D research in the world, along with other organizations and NIH and companies. We have to look at how we all fit together.

That’s a long-winded way of saying it’s a balance that we constantly arm wrestle over, hash out and argue about (positively, I think).

Flat out: What’s going on with pursuing a cure?

Personally, you’ll hear me say– and what will be reflected in our funding in the coming years – is that I do believe we need to make a better push for type 1 diabetes cures, plural. Right now, about two-thirds of our budget is going toward cures research. That means for people like us who are living with T1 for a long time, for kids who are auto-body positive, and so on. The other third is for treatments, like devices and drugs and psychosocial aspects.

All that being said, we are absolutely in a different place from where we were when you and I were diagnosed (in 1984). While some are frustrated that we’ve been over-promised and under-delivered, and we can haggle about why all that is… we are so much further than we have ever been. I firmly believe that cell and immunotherapies are going to deliver at some point. I never put timeframes because we just don’t and can’t know when that may be. But we’re at a point now where these are moving into human trials, and the science is absolutely light-years ahead of where we’ve been – even from 10 years ago.

And that doesn’t mean you’ll stop funding technology?

Ultimately, the reason JDRF was formed was to try to deliver a cure. That’s what the original founding moms wanted and many of our volunteers want. And I’m excited that our science teams will be pushing hard on scientific cures for diabetes.

Meanwhile, I do think we have great momentum in the community on tech and closed loops, and we’ll continue to fund that because we do have gaps. We need smaller device options and more automated systems. So yes, we will continue to fund that.

JDRF has also been pushing hard in recent years on open-protocols and bringing the homemade Do-It-Yourself technology to the forefront. Can you talk more about that?

We’re making great progress there. We have the Open Protocols Initiative and we’ve funded projects like the Tidepool Loop with the Helmsley Charitable Trust, now a $9 million grant there. The expectation of that is to deliver an incredible update to Loop, which has been a DIY project but will take this into official, regulated FDA territory for commercial release on the market. That may be in late 2019 or early 2020.

And what’s amazing to me is that we’re seeing the diabetes industry opening up to the possibility of #WeAreNotWaiting, with Roche, Insulet and smaller companies saying they’re open to it. We are talking to everyone about making this happen, and that’s a paradigm shift for the industry that’s been years in the making. This isn’t JDRF alone, as there have been so many people in the community who’ve been a part of all of this. But I remember coming back to the JDRF offices after a diabetes event a couple years ago and saying to the team, “I think we need to get behind this and figure out how we can bring this above the table.” And that was, in large part, driven by my own personal experiences with this tech.

Because you’ve also been using a DIY closed loop system, correct?

Yes, I’ve been Looping now for about 2.5 years, and the day before Thanksgiving will be three years. That’s about how long my brother has been Looping, too. That’s another lens for me to bring to JDRF -- that value proposition of having this community driving change and helping, and having JDRF then synergize and help out as well, is an ideal example of the community driving solutions and everyone playing an important role.

Not everyone wants to use technology, though…

Of course. Our device work at JDRF is amazing and I’m incredibly proud of what we have done over these past 15 years, and going back to insulin pumps and CGM development and moving us down the path toward closed loop technology. It’s all better. But I appreciate that not everyone wants to wear devices.

Here I sit at the helm of JDRF on Day 1, and I know we need to modify the disease of type 1 diabetes. In our scientific parlance, we say “disease modifying therapies.” We need to change the course, to eventually get off devices and normalize blood sugars – like the Edmonton Protocol shows can be done. That’s the goal.

Where are we on the #BeyondA1C movement that JDRF has supported, pushing to look at time-in-range and other constructs for measuring diabetes outcomes?

A lot of great momentum is happening there. In fact, we were on the phone with a big payer today talking about the cost of hypoglycemia and how their coverage is a part of addressing that. Of course, reducing hypoglycemia is the obvious #BeyondA1C outcome. But as part of that discussion, I was talking about time-in-range and access issues as well.

That coincides with the consensus in defining ranges. And when JDRF funds projects now, we’re requiring people to report out so we can compare results. That also involves discussions with both FDA and payers. So there’s considerable action, and it’s not just talk. It’s incorporating these consensus documents on outcomes into health policy design. That makes it real for people. We do need to do better when we go to DC to Congress, whether it’s arguing for more federal funding on research or regulatory policies that appreciate outcomes… it’s about having the data in our back pocket to say these results are clinically significant, everyone agrees, and you need to incorporate these into your policies. That’s especially important.

Speaking of payers and access… is JDRF doing enough?

We’re fully aligned with advocates who want #insulin4all, and we’re looking at every opportunity to highlight that people with diabetes need affordable insulin. It shouldn’t be a choice between paying their mortgage payment or groceries, and rationing insulin. The old insulins are not the solution. I thought coming out of the (April 2) hearing before the Congressional subcommittee, that we’re all on the same page for that. How we get there is something we may disagree about and fight on a number of fronts, but JDRF is in the fight.

From my perspective, this isn’t just insulin either. People with diabetes should have access to whatever they and their doctors believe will help them achieve the best outcomes. So having insurance plans switch insulins or pumps on you, that so-called Non-Medical Switching, is unacceptable. This is why we’ve prioritized health policy in addition to what we do on cures research. If you can’t afford or access your best treatment options, and won’t make it to the point of getting to any cure, we haven’t achieved our goals at JDRF.

And this goes beyond just impacting underserved communities, right?

Absolutely. People are just so frustrated at the state of healthcare when you have a chronic disease. I understand, and know why people raise their voices and send passionate emails to me. I get it. Because I’m upset and pissed off too. As I said on The Hill, my brother switched jobs just to get insulin at a reasonable price. It’s nuts and none of this should be happening. I wish I could just snap my fingers and fix this. But it doesn’t work that way, and we’re doing everything we can at JDRF to help move that needle as quickly as possible.

How does JDRF balance its advocacy with Pharma and Industry relationships and sponsors?

JDRF is governed by people who have a personal connection to type 1 diabetes, so our number one priority is working to achieve the best outcomes. Of course, we work with Lilly and Novo and Medtronic and all these companies because they’re delivering these treatments and technologies. And we know we need better tools.

That said, we must ensure that they’re accessible. Having a great solution that’s inaccessible means we haven’t met our goal. We are very transparent with any company we work with – we want them to be successful and deliver solutions for people with diabetes, but they have to be affordable and accessible.

 

Thank you, Aaron – and huge congrats again on your new role. We agree that you’re a perfect fit and are eager to see what comes next for JDRF with you leading the way!

{You can find Aaron on Twitter at @aaronjkowalski, often posting about exercise and diabetes and how all people with T1D can live their lives without limits.}