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diaTribe’s Exclusive Interview with Dr. Aaron Kowalski, JDRF’s First-Ever Chief Mission Officer

By Adam Brown and Kelly Close

Twitter summary: @JDRF Dr. Aaron Kowalski named Chief Mission Officer! Why he’s a perfect choice, what’s most exciting @JDRF, & his vision of T1D in 2020

JDRF’s Dr. Aaron Kowalski has been a remarkable voice and advocate for people with diabetes over the past decade, particularly in propelling JDRF’s incredible efforts on CGM and the artificial pancreas forward. Today, Dr. Kowalski was named JDRF’s Chief Mission Officer as well as VP of R&D, a major and much deserved promotion from his previous role as Vice President, Artificial Pancreas, to which he had been promoted in the last couple of years. As Chief Mission Officer, Aaron plans that his top priority will be working closely with JDRF’s team to ensure that new treatments get into the hands of people with diabetes more quickly. Additionally, Aaron’s new role will allow him to work as a bridge between the community of people impacted by type 1 diabetes and all that JDRF is doing on the research and advocacy fronts. No one is better positioned to do so, given his deep scientific knowledge of type 1 diabetes, his valuable, decade-long experience at JDRF, his patient perspective from nearly 30 years of type 1 diabetes and a close family member (his brother) for nearly 40 years, and a never-ending drive to make life better for people with diabetes. JDRF’s mission is to “turn type one into type none,” and with this new promotion, we are confident that Dr. Kowalski is the very best choice to make that mission a reality. 

In this exclusive interview, Aaron shares details about his new role, what he is most excited about that JDRF is working on, his dream for what type 1 diabetes will look like in 2020, what his biggest worries are, and what living with diabetes is like for him. The interview has four overarching sections, to read a particular section, click on one of the links below:

  1. Aaron's New Role - Chief Mission Officer

  2. Research at JDRF and the Future of T1D

  3. Living with Diabetes

  4. Career at JDRF

Aaron’s New Role – Chief Mission Officer

Q: Can you discuss, on the research front, whether your new role as Chief Mission Officer will differ substantially from your previous role as Vice President, Artificial Pancreas? While in name, your work is now related to research much more broadly, it’s also true that all these years you’ve also played a strong role across all research at JDRF.

A: Thanks so much, Kelly. I’m very excited to take on this new role. On the research front, I will still be very involved. As you note, I’ve worked on the JDRF Artificial Pancreas Project since the inception in 2006 with Jeffrey Brewer while he was on our international Board. We are fortunate now to have an amazing team focused on the project and I will be working hand in hand with them as we drive towards the first systems that begin to dose insulin automatically in the coming few years. We have a fantastic team of scientists at JDRF and I will also be working with them across our portfolio. I’m proud to be part of the JDRF Research leadership team – they are an amazing group. Drs. Insel, Griffen and Greenstein provide incredible knowledge, expertise and years of experience. I hope to continue to add value to the team both with my scientific background, but also as a conduit to the voice of people with diabetes.

As you know, I have my voice – 30 years now living with T1D. I also have perspective of having a family member with T1D – my brother has lived with T1D and hypoglycemia unawareness for 37 years. But importantly, I want to link broadly to the diabetes community. The JDRF community, the clinical community, adults with T1D, parents of children with T1D, loved ones, etc… We are moving towards improved treatments and I think this role will provide a bridge from the broad community of people impacted with T1D to our research and advocacy efforts. JDRF has done this very well in the past and now, what I hope to do is expand these efforts in our research department and beyond.

Q: We’d love, for the sake of all on the diabetes front, if we could clone you! How will you divide your time between all the exciting pieces of your new role?  

A: The top priority will be working closely with our research and advocacy teams to accelerate the pace at which the investments we’ve made in new treatments reach people with diabetes. I always have said that the ultimate mark of success for us will be people with diabetes doing better. The foundation of these advances is research and development efforts. We need a pipeline of transformative therapies that will dramatically improve our lives with diabetes until there is a cure (and I think the pipeline is amazing, with artificial pancreas technologies around the corner and encapsulated islets and smart insulin going into human clinical trials).

With these advances, JDRF has significantly increased our efforts in the areas of access…Moving forward, as new therapies such as artificial pancreas (AP) systems come to market we need to ensure that all people with diabetes who can benefit from these advance do. I’m excited to work with our team to tackle these challenges.

I’m also looking forward to working more broadly at JDRF. I’ve done this to some degree in the past, but I hope to increase some of these efforts. We need more people with T1D supporting our mission. And when I think of support, I think of many things. We obviously need to raise money to support the research efforts that JDRF funds. I will certainly work with our team to help explain how important these efforts are and why JDRF is worthy of precious financial contributions. That said, I would like to see more people with T1D get involved in many ways. We need more diabetes advocates, we need more government support of diabetes research, we need more diabetes role models, we need more diabetes visibility, we need more collaboration between diabetes organizations, etc. These are lofty goals, but I hope that I can work with the various teams are JDRF as well as with the amazingly committed people in the diabetes community (such as your team at diaTribe!) to make a dent.

Q: What are you most excited about that this new role will make possible?

A: In addition to my work in research and advocacy, I’m very excited about helping broaden the impact of JDRF. I’m so proud of our organization. I’m excited to be out in the diabetes community working with other incredibly committed people with diabetes to help accelerate our mission of “turning type one into type none.” I’m excited about working with the diabetes online community. You know Kelly – you were my first Facebook friend! I’ve been tweeting about my running with diabetes and hope that I can be a good role model for people with diabetes and show that we can live diabetes without limits. 

Research at JDRF and the Future of T1D

Q: Okay, here’s a broad question, Aaron! What are you most excited about that JDRF is working on near-term? Medium-term? Long-term? While it’s perhaps easier for patients to understand work in diabetes technology, can you put into everyday language what’s exciting on the other areas of focus at JDRF – namely, complications, immunology, and other cure therapies?

In the near term, I’m excited about a couple of projects that are moving along. One that we have just kicked off over the last year is on the data front. In the diabetes online community, we hear and talk about this quite a bit. There are amazing things being done. Here at JDRF, we’ve partnered with Tidepool to make an important step to allow people with diabetes to more easily access their data, and importantly facilitate visualization of data from multiple devices in a simple easy to use format on PC’s or Mac’s. This software will also be accessible in the clinic and we hope will facilitate use of data at each visit, maximizing the benefit of diabetes devices and drugs.

Another near-term project that has me SUPER excited is our partnership with BD on infusion sets. Infusion set issues are frustrating, often painful and can lead to big bouts of high blood sugar and in some cases, DKA. JDRF, the Helmsley Charitable Trust, and BD partnered to improve today’s insulin infusion sets. I believe you’ll see in 2015 that tremendous progress has been made and in the near-term – we can expect to take a big step forward to more reliable infusion sets. While not a cure, this is a critical component of insulin pump therapy and I can’t wait to see this come to fruition.

The most exciting medium-term advances are in the area of macro-encapsulation and smart insulin. We’ve hit two major milestones with the launch of clinical trials of the Viacyte encapsulation product and the announcement from Merck that they are moving into human trials of their glucose-responsive insulin. While I have been a tremendous champion for artificial pancreas systems, and I believe we will benefit tremendously from these devices, as much as anyone else with diabetes I look forward to the day when I can retire my diabetes devices. These two areas give me tremendous hope.

In the longer term, restoration of insulin production from “within” the person with diabetes will probably be possible. We now know that many people with T1D – even for a long, long time (50+ years) still have cells in their pancreas that make some insulin. Obviously not enough to regulate blood sugar, but what this tells us is in the future, if we can specifically stop the immune system, that we may be able to cure the disease. This is the Holy Grail. It will take time, but we still remained focused on the ultimate goal of walking away from T1D and this gives us reason to believe that it will be possible.

Finally, I’m a big fan of prevention. Dr. Insel, our Chief Scientific Officer, has been leading the charge on this front and he has such incredible experience and knowledge about the approaches that may work. Obviously, this is a huge concern in my family. With two of us affected by T1D, we know that our children are at increased risk. We need to prevent T1D from happening in the first place and I’m thrilled to see the progress being made in this space.

Q: What worries you the most as you think about the next 3-5 years in type 1 diabetes? The next 5-10 years in type 1 diabetes?

A: A few things worry me. First, we still do not understand T1D well enough. We need more research on the causes of T1D, the human pathophysiology, and the interplay between the beta-cell and the immune system. To cure and prevent T1D, we will need to make advances in our core knowledge of the disease. Much of these studies are supported by the NIH Special Diabetes Program (SDP). Reauthorization of SDP is a top priority of JDRF. This funding has done so much to advance our knowledge of T1D and provides a critical foundation of funding from which JDRF and other funders launch. If this program is not renewed by Congress, there would be a huge funding hole to fill.

Another area of concern is access to new advances in diabetes. It’s heartbreaking to hear stories from families who can’t afford CGM devices and would benefit, from people in Medicare who aren’t covered for CGM devices, and globally the lack of access to diabetes treatments. JDRF has increased our focus on access and without focus we may see a double whammy of people with diabetes lacking access to new game-changing therapies, as well as companies dis-incentivized from investing in next-generation therapies due to a poor market and poor economics.

Q: You’re smart about type 2 as well, Aaron – what do you think the type 2 community can learn from type 1 and vice versa?

A: This is a great and important question. Though two different diseases (though that is being debated by some!) we are linked in important ways. Obviously, both types of diabetes are characterized by high blood sugar, and high blood sugar is bad. For the most part, the terrible complications of diabetes are the same and they are devastating. Another thing that I don’t think most people appreciate is that both types of diabetes have strong genetic links. I think many people forget that T2D is a disease. It is much more complicated than being overweight. Finally, both T1D and T2D people will benefit from many of therapies that are in the pipeline. While artificial pancreas systems may not be for everyone with T2D, they certainly will be applicable to many who are on insulin. Beta-cell encapsulation, smart insulin and therapies that help restore beta-cell function will also be used across both forms of diabetes. This is important, because the more applicable the therapy, the more incentive there will be for companies to invest and bring these therapies to market.

Q: Fast forward to 2020 - what would your dream world in type 1 diabetes look like? Tell us about the regulatory landscape and reimbursement. What is the greatest gating factor to getting the artificial pancreas into the hands of people with diabetes? Cure therapies?

A: In 2020, I expect that we will be wearing semi-automated AP systems and that glucose control will be easier and better. I believe that diabetes care will be much more efficient, with incredible tools to help clinicians deliver care more effectively and efficiently. I’m optimistic that in 2020 diabetes will be quite different that it is today.

JDRF is working with other stakeholders (diaTribe included!) and with the FDA to further refine how they think about approval of next generation therapies and treatments. Big questions on the table include – what is the appropriate risk/benefit ratio for new therapies? What are the right outcomes for diabetes trials? As therapies improve, it will be likely that A1c will not always be the right primary outcome measure.

Reimbursement and clinical adoption of new therapies will be critical. As I noted earlier, all of this work must result in better outcomes for people with diabetes. CGM is a good example of this. While a CGM may not be right for 100% of people with T1D, it sure is right for more than 11% of people (the most recent data from the T1D Exchange)! Diabetes is a disease defined by abnormal blood sugar levels, here is a tool that shows those levels in real-time, and only 11% of people in the US are using CGMs. I believe this shows that there is work to be done to ensure that once FDA approves new treatments, they make it into the hands of the people who need it. The diabetes community needs to unite to advocate on our own behalf.

Living with Diabetes

Q: How do you relate to other adults with type 1 diabetes? What change in behavior do you most wish for?

A: Like everyone with diabetes, I relate to the unrelenting nature of the disease. It’s every darn day. And, while I’m a scientist who’s worked in the field a long time, wear a pump and a CGM, exercise, etc…I still by no means have perfect blood sugar levels. I relate to the frustration of doing everything you can to try to get the blood sugar right and being surprised by highs and lows. It’s frustrating.

One big goal for me is to try to get more adults with T1D involved in diabetes and with JDRF. It’s a challenge. Most of the time we spend every moment we can trying not to think about diabetes. That’s the goal – reducing the impact of diabetes in our lives. And, I think this is the reason many adults don’t get involved. They haven’t seen huge advances, they don’t want to be defined by their diabetes, and they want to think less about T1D, not more.

However, I think we can do both. We can be advocates for better T1D research funding, advocates in Washington, or around the globe, and be champions and examples of people living diabetes without limits. This is why I’ve been Tweeting and writing a bit about my running with T1D (#RunningwithT1D).

Q: Tell us more about your running – we see you are posting about it on Twitter (@aaronjkowalski) and Instagram (aaronjkowalski).

A: As you know, I am a “glass half full” person. And, one of the important messages I try to convey when I talk to PWD and families with children with diabetes is that of #DiabetesNoLimits! My parents were amazing for my brother and me and the most important thing they said to us growing up with T1D was “you can do anything your friends do and more!” We’ve always lived that way. I’m fortunate to have played a varsity sport in high school (golf), went to grad school, have a great family, and work on the front line of diabetes. My brother played varsity basketball, is a professional architect who runs his own company and has an amazing family. We are very lucky.

Running for me is another example of doing something that is hard in spite of having T1D – in some ways proving T1D wrong! I’ve now run 17 marathons, broken 1:30 for a half marathon, and ran a qualifying time for the Boston Marathon. I say that not to brag – there are many much more accomplished athletes with T1D than me, but rather to highlight that people T1D are doing amazing things and many of them are not talking about it. This is why I started writing about my running with diabetes. I wanted to show other adults and parents of kids with diabetes that even a nerdy scientist who is working full-time, traveling frequently, and has a family, can still run and even compete in races. Hopefully, some people will find that inspirational. Beyond the inspiration, running has come with tremendous health and diabetes benefits for me. I’ve lost weight, use less insulin, and have been eating healthier.

JDRF has just launched a new program JDRF PEAK – T1D Performance in Exercise and Knowledge. Adam has been a champion on this front and I’m excited that JDRF is going to weigh in on the importance of exercise as a key means to improve diabetes control. We’ve just kicked the program with a number of the world’s top experts on exercise and diabetes (including diabetes and exercise champions and good friends Ann Peters, Phil Southerland, Michael Riddel, Bruce Bode, Rory McCrimmon, Tim Jones, and the list goes on). It’s a true honor to be part of that group and we’re looking forward to helping encourage more people with T1D taking part in sports and exercise of all types.

Q: What did your family say about this change?

A: My life is all about my family. I’m incredibly fortunate to have super supportive parents. My dad was a long-time scientist (30 years at J&J in their microbiology/sterilization sciences group) and my mom stayed home with my five siblings and me until we were old enough for her to go back to teach art and art history at my high school. When I started at JDRF, my motivation was defined more by my brother and his diabetes challenges than by my own diabetes. That continues today, but it is augmented by my children and my desire to be healthy for them as they grow up as well as our worries about their risk of developing T1D. My parents were my role models, highlighting the importance of education and hard work and my family is certainly proud that I’m working in diabetes and hopefully making a difference. I hope that my hard work provides my children a strong role model.

Diabetes is such a family disease and I’m very grateful that my four siblings who don’t have diabetes have been tremendously supportive of Steve and me and JDRF. My sister Mary Beth and brother Jonathan have raised tens of thousands of dollars running on Team JDRF – having completed five NYC Marathons and a number of half marathons with the team. The diagnosis of T1D is obviously very hard on the child or adult who is diagnosed, but the siblings suffer as well. I’m very thankful for all of the support my siblings have given over the years.

Of course, I must end with my most important source of support – my wife Michele. My job entails many long days and a fairly significant amount of travel. I’m fortunate that Michele is so incredibly supportive, is also an incredible role model for our kids, and is the rock of the family.

So this is a very long-winded way of saying, they are proud of what I’m doing at JDRF, but they are why I’m doing it and we are all really working together in different ways to make a difference.

Career at JDRF 

Q: What question do you most ask yourself in your day-to-day work at JDRF?

A: What drives me the most is a sense of urgency. I want better treatments now! The question that I’m always asking is, “How can we move faster?” I want better treatments for my brother and me, for you and Adam, and for all people with diabetes. When I travel the country and I meet families with little ones with T1D, I still get emotional as they tell me their challenges as well as their triumphs. There are so many highs and lows – literally and figuratively. When I look at the T1D Exchange data and see just how much room for improvement there is on so many fronts, I ask, “How can we move faster?!”

Q: What has been the most rewarding aspect of your work at JDRF?

A: I often say that the T1D club is the club that no one wants to join, but it is a club made up of amazing people. I feel very fortunate to work with such incredible people. I think of our CEO Derek Rapp and how much he’s given to help people with T1D. Likewise, John Brady, the Chair of the JDRF Board – he is a true champion for people with diabetes (PWD). My good friend David Panzirer – I hate that his daughter has T1D and that he and his family “joined this club”. But, his passion, his smarts, and his incredible leadership at the Helmsley Charitable Trust have already had a transformative impact. 

I think of Bob Sherwin and Bill Tamborlane at Yale, who have both given so much to the field. They accepted me when I first joined at JDRF and began to work on our hypoglycemia research funding and helped me grow my knowledge of the disease by leaps and bounds. Roy Beck of the Jaeb Center, another incredible champion and friend, who shifted his research focus to diabetes after the diagnosis of his son.

Kelly and John Close and Adam Brown – your work helps raise the body of knowledge for everyone in the field. I could go on and on. The most rewarding aspect is the people. Every day I’m comforted and more optimistic about the future because I know so many incredible people are working on the behalf of PWD. I’m standing on the shoulders of many giants and feel that if I make a fraction of the impact that many of these people are making, I will feel like I helped make a difference.

Q: What JDRF regions have most impressed you? Beyond Northern California, we mean!

A: I’ve met so many great people all around the United States and across the world. It is a long list. I would like to highlight one region in particular that has blown me away over the past few years: Detroit. Through the incredible downturn in the economy and challenges facing the automotive industry, the JDRF group in Detroit showed resolve and commitment that was absolutely amazing. The Ford family and Ford Motor Company have led the way. Very few people in the broad diabetes community have heard the names Marvin Daitch and Grant Beard, but they are two of my best friends in diabetes and their commitment to help JDRF on behalf of Marvin’s son-in-law and Grant’s Daughter – both through incredible family support as well as dogged pursuit of furthering our mission – have raised millions of dollars to support diabetes research. In the face of incredible hardship in their backyards, the families in Detroit remained resolved to continue to plow forward and support JDRF and a better future for their loved ones with T1D. There are so many incredible stories out there like this. So many unbelievable people that I’m very grateful for. But, I always smile when I think of the group in Detroit. They are champions for people with T1D!

 

For more news about the JDRF and Dr. Kowalski, check out the following articles below:

 

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