JDRF’s New CEO Aaron Kowalski Talks to Beyond Type 1
On April 9, 2019, JDRF announced the appointment of Aaron Kowalski, PhD, as the new President and Chief Executive Officer for the global diabetes organization. Dr. Kowalski has worked for JDRF for 15 years, most recently in the role of Chief Mission Officer. He was an early advocate of continuous glucose monitoring and closed-loop systems, and is the first JDRF CEO to be living with Type 1 diabetes. Beyond Type 1 spoke with Dr. Kowalski about his priorities as CEO, the future of T1D research and treatment options, and how his diabetes has informed his work.
BT1: What are some of your top priorities as CEO, both in the short term and in the long term?
AK: I think in the short term, a couple of things — One is I don’t want to lose momentum. I think we have amazing momentum in the field of diabetes research … We’re funding this open protocol initiative to try to make diabetes devices more plug and play and allow for people to choose which device works best for them for a hybrid closed-loop system. We’re trying to make progress on making closed-loop systems more automated, so you don’t need a bolus, miniaturized, more affordable and accessible. The device space has just come a long way … I use a loop system and my brother does as well, two and a half years each. It’s been game changing for us. So the question for us at JDRF becomes how do we make sure that gets out there and more people have access?
The other thing that I think is very exciting in my mind is the work on diabetes cures, and I’ve been using the plural there because I think just like an artificial pancreas — there’s no one specific artificial pancreas — there’s a variety of different approaches. We have a number of different approaches that are moving in human trials, focused along the lines of beta cells, beta cell therapies and immunotherapies, that are making tremendous progress. I don’t want to see any gap in momentum there.
The second piece, from my perspective, is the community. You guys [at Beyond Type 1] have been amazing in terms of building and strengthening the community and getting more people engaged and getting them mobilized. How do we make sure that we’re all pushing together and how do we get some of the people who have incredible talent and resources to bring to the table more engaged? A population that I think of is adults with Type 1; we’ve seen some movement, and I believe Beyond Type 1 deserves incredible credit for that. JDRF has been working hard to try to do this as well. But I would love it if more Type 1 adults got involved, and that could be participating in a variety of different ways to help move the mission of JDRF and the T1D community forward.
The long-term goal is to get away from devices and walk away from this disease and prevent it and reverse it. And I’m more optimistic than ever that the science has evolved to a point where — I can’t say timeframes, because I know people are sensitive and my family is sensitive to promises of a few years — but I can tell you we have a number of irons in the fire that are very hot in terms of potential to modify the course of Type 1 diabetes, and I think that’s why JDRF was founded: to cure Type 1 diabetes.
Are there any particular studies or any research areas you want to highlight that you’re excited about?
I’m very excited by cell replacement therapy. I [met] with Dr. James Shapiro in Canada last year — He created the Edmonton protocol for islet transplantation … and JDRF has really moved away from that idea of islet transplantation. And he said, “I know you guys are pivoting, but remember that we still have patients 17 years post-transplant on zero insulin with normal A1c.” And if you think about that, it’s pretty amazing. Imagine having Type 1 today and not having it tomorrow and going 17 more years without having Type 1.
Now, the barriers are obvious. We don’t have enough cells, what we would call cadaveric islet transplantation, requiring somebody to die and donate their pancreas, is a supply issue. We don’t want to have to do it that way. Then these people do require chronic immunosuppressants, so that’s an issue. But it shows you the power of replacing cells can cure Type 1 diabetes, at least for long periods of time. So, I would single out cell replacement because you have Viacyte, you have Semma, Doug Melton’s company, you have the University of British Columbia, you have now Novo Nordisk and Eli Lilly all working on stem cell-derived insulin producing cells that at least in animal studies, can cure animals. So, if we can get that immunoprotection of those cells, we might not have to wear pumps anymore or do shots anymore or CGMs anymore. And that, again, is my ultimate goal.
And at the other pillar of what I think is going to really blow up over the coming years is immunoregulatory strategies. We have had meetings with FDA recently on immunotherapies. We’ve had meetings with companies recently on immunotherapies. I do think that’s the other pillar. So, cell replacement and beta cell therapies — very, very exciting work right now. Immunotherapies — very, very exciting work right now.
You’ve had Type 1 diabetes for over 30 years — How has that informed the work you’ve done at JDRF so far and how will it going forward?
It certainly has played a huge role in my thinking as I’ve grown up, not only at JDRF, but as a scientist. Probably the most important piece for me initially was not as much my own diabetes, but my brother’s. I’ve been public and he’s been public that he really struggled with his hypoglycemia unawareness. He’s very unaware of hypoglycemia, which caused seizures over the years, a car accident, and a couple of very, very near-death experiences. When I came to JDRF, that was part of my interest in devices, because he could not sense he was going low … The idea of having a device to provide another line of defense that he was missing was very, very interesting to me and really was part of the catalyst for working with JDRF’s board to launch the JDRF artificial pancreas project. We spent a huge amount of focus on trying to deliver CGM reimbursement and clinical adoption on that and how could we drive closed-loop systems to the market.
It’s interesting as you get older with Type 1 — one of my big interests these days of course is curing Type 1, but one way that I think of curing Type 1 is having people who are at risk never get it. We have prevention programs here at JDRF and I have said the average person in the United States has a 1 in 300 risk of getting Type 1 diabetes. My kids have a 5% risk. So there’s a genetic component, which I’m constantly trying to push on adults with Type 1 who don’t want to get involved. I say, “It’s not just you, it’s your loved ones. And if you have kids, it’s your kids who are at risk.” That’s also kind of shaped my focus at JDRF and my worry about the next generation.
We have a big partnership with the Helmsley trust, who are a hugely important part in our prevention of Type 1, which to me is a cure for those at risk. The lens of living with Type 1 is different than the lens of the parents of a child with Type 1, and that’s not a knock. [My parents] were so important for my brother and I through highs and lows, literally and figuratively, coming at the end of our teen years and young adulthood lives, and they have always been there for us.
But living with it is different. You go through the grind and the burden and the poking and the anxiety and that certainly helped me and it certainly brought a lens. One of the things that we’re focusing on, and I know we’ve been talking to the team over at Beyond Type 1 about this, is the psychosocial burden of Type 1 diabetes. That’s something that we weren’t doing here. I brought Nichole Johnson on board and we are doing a bit more, and I hope that there will be even more in the future. So I think everybody plays their part. This is a huge team. My personal experience helped shape how I think about this. I’m always listening because each individual has their own story as well, but I can’t get away from the fact that [Type 1] has impacted my family tremendously.
You recently testified before the House Energy and Commerce Committee, and there are ongoing hearings in the House and Senate this week about the cost of insulin. Why do you think the government has been more aggressively examining insulin pricing? What do you see as JDRF’s role in these ongoing discussions?
It’s really almost like the straw that broke the camel’s back. We’ve had a festering problem that’s been driven by an insurance ecosystem that’s changed over the last number of years. Back in the day, most people had insurance that had copayments, and the copayment was fixed. Today, many people have coinsurance or high deductible plans or many people are getting priced out of insurance. The price, because of the system, has also gone up tremendously and it’s caused a perfect storm where now people are making these awful decisions of, “Should I pay my car payment or should I buy my insulin?” And as you heard on the hill last week, there’s data that people are under-dosing insulin because they can’t afford it. So this storm in our minds is unacceptable … If you can’t afford a diabetes treatment, namely insulin, you’re not going to achieve a better outcome. In fact, you’re going to have terrible outcomes.
We are firmly committed at JDRF that people with diabetes need access to affordable treatments that help them do the best. First and foremost is insulin. You can’t live without insulin … It needs to be affordable. It needs to be affordable if you’re on a health plan. It needs to be affordable if you’re uninsured. This is an untenable situation. So we have a fantastic team in DC led by an amazing partner for me, Cynthia Rice, plus our community and I know and commend Beyond Type 1 — you guys have been out there since the very beginning highlighting that our community needs help.
I traveled to 35 states last year. The number one question I got was about insulin affordability. If you look at the highest level, JDRF’s stance here is people with diabetes and their doctors should be deciding what’s best for their diabetes treatment. What’s best should be affordable and accessible. Simple as that. Of course, the solutions are going to take a lot of work, but we are very, very committed to working with groups across the community to drive solutions and get us out of what’s a terrible problem right now.
Can you talk more about the importance of a person with T1D’s ability (along with their care team) to choose the treatment plan they feel is best for them?
You need to be your own greatest advocate and going into the doctor’s office and working with the physician and the team to make sure you have the best solutions for your diabetes. JDRF’s perspective is those treatment options need to be accessible and affordable. The other thing that we believe strongly in is that competition drives innovation. Like the loop project — we talked to Medtronic and Tandem and Insulet and Bigfoot about loop. We said, “We want you to succeed, but we want more options.” More options are good for everybody. There’s plenty of room for competition unfortunately. That’s the unfortunate part. There are too many people with diabetes, Type 1 and Type 2.
How do you see JDRF collaborating with other organizations in the diabetes space?
More and more. I think that the board of JDRF and me and our teams, we realize this is a problem that one group can’t solve alone … It’s really going to take a collaboration across disciplines, across stakeholders and probably across the world to solve these problems. And JDRF, I’m proud of the role we play. I can honesty say I’ve benefited from the work that we’ve funded, but that chain was incredible collaboration. So many smart people and incredibly committed people working … The more we can work together, the better people with diabetes will do.