5 Key Points from Q&A with Aaron Kowalski and Rob Howe
On May 1,Ā JDRF President and CEO Dr. Aaron Kowalski, and Rob Howe, founder of Diabetics Doing Things, sat down (virtually!) for a Q&A.
Below, five key points from their conversationāfacilitated by the JDRF – Beyond Type 1 alliance.Ā
1. The Coronavirus disease (COVID-19) pandemic has caused community-based organizations like JDRF to reimagine fundraising. Thanks to the dedication and ingenuity of the T1D community, JDRF has already seen some successes.
Rob Howe: āThe inability to meet in person has caused everyone to reimagine events and fundraising…. Can people in the community and people watching this video continue to support the mission and their local chapters at this time?ā
Aaron Kowalski: āItās something weāve been thinking about a lot because we are a community-based organization. Weāre a grassroots organization and our fundraising that supports all the research and advocacy we doāa lot of it, a big chunk isāin person. Walks, Rides, Galasā¦. And itās really interesting because I think from my perspective, thereās this real sensitivity that a lot of people are hurting out there, and this concern of whether fundraising right now is appropriate.ā
āMy answer has been itās not mutually exclusive. Weāre going to do everything we can to be supportive of the community from a COVID perspective. My mantra has been, āIf you can, this is a time we need folks to lean in.āā
āNot-for-profits like JDRFāmost of us donāt have endowments, meaning we donāt have a big pool of money we pull from. So the mission and the advocacy and the research that we fund requires us to gather as a community and lean in.ā
āThat has caused us to reinvent. A good example of this is was this weekend we did a virtual Gala and it raised over a million dollars. It was amazing.ā
āThis past weekend, I did a virtual runāand Beyond Type 1 and JDRF got a bunch of folks to participate. I think we had from most every continent a person with type 1 running. We ran almost 1,000 miles together virtually. Everybody went out and did their appropriate, socially distant running. I did a half-marathon on the New Jersey half-marathon course by myself in the pouring freezing rain. It was a terrible running day. But we are about to hit $60,000 of fundraising. It was an awesome community event, and it will help support the mission.ā
āSo, yes, the pandemic has caused us to reinvent. Iām super sensitive that people are going through a tough time, so I again come back to, āIf you can, this is a time we need folks to lean in.āā
2. JDRF and the T1D community have evolved. More adults with T1D are leading and along with cures, prevention is a priority.
Rob Howe: āItās interesting to see the adoption of leading with and opening with, āHey, Iām a person with diabetes.ā Thatās something that for the first 10 years of my life with diabetes, I was uncomfortable doing. I didnāt 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.ā
Aaron Kowalski: āThis organization was founded by two momsā¦. I feel like parents carried the weight for the first essentially five decades of this organizationā¦. My parents have done so much for me and my brother over the years and supported JDRFā¦.ā
āBut the thing that makes me proud is weāre 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.ā
āHere, 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 JDRFāJuvenile Diabetesābut itās 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.ā
āA lot of people with type 1āfor all sorts of reasonsādidnāt want to be associated with their type 1 or didnāt want it to be out in front. Or they didnāt want people to think differently of them.ā
āA lot of type 1 folksāwhom Iāve met at leastāthey internalize their T1D and they sometimes donāt share it. I certainly didnāt at first. They may see it as, āIām the only one in my family,ā but they donāt appreciate that itās actually genetic.ā
āOne 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 donāt want to get involved because they donāt want to focus on their T1D as it is their thing, that āItās actually your kidsā thing, itās your siblingsā kidsā thing.ā 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 itās elevated. And unfortunately T1D is increasing right now across the globe for reasons we are trying to explain.ā
āThe community leaning ināI think thereās a responsibility to lean in because the next generation is at risk. And thatās what we want to stop. We donāt want them to join the club. Itās a club we want no more members of.ā
3. Life with T1D in the 1970s and 1980s was very different.Ā Ā
Rob Howe: āSomething that always gives me a lot of hope and a lot of encouragement especially when Iām 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.Ā But youāre the CEO of JDRF you have lived the life that me as a young person or someone with diabetes can look at and say, āHey, this is possible for me.ā What do you remember about those early days and those challenges living with diabetes?ā
Aaron Kowalski: “It was a very different time. And I know thereās 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.ā
āBut it is better…. And back then there was no blood sugar testingā¦. Back then we tested on a color-based strip when I was diagnosedā¦. There was cow and pig insulin.ā
āBut you know coming to today. The one thing that I always say to people is the best advice my parentsĀ gave my brother and meāIāve said this a million times but I think itās so appropriateāis, āYouāll do anything your friends do, and more.āā
āAnd it may be harder, and it certainly was harder. My brother doesnāt sense hypo well. He had seizures, a lot of severe lows. But played varsity sports, traveled abroad. Iāve run 20 marathons. He does the 100 mile JDRF rides. Heās 43 years into it and heāsāknock on woodāhealthy.ā
āI tweet out #T1Dnolimits and I do that because I think itās super hard, but youāve got to get at it in the face of the challenge that is type 1.ā
Rob Howe: āItās 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 sportsā¦. These are amazing people living with diabetesā¦. Sometimes itās like, āAm I doing something wrong because Iām not achieving at that level?ā ā¦The biggest thing for me is, even if youāre 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.ā
4. Advocacy is crucial to accomplishing the mission: somebody with T1D doing better.
Rob Howe: āIād like to talk about a specific momentā¦. It was for your speech to the Senate Judiciary Committee. What was it like for youāeven outside your role as CEO of JDRFāto 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 JDRFās continued work on affordable insulin?ā
Aaron Kowalski: āThese momentsāI often say to my wife, āHow did I get here?ā 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.ā
āSo getting up there is nerve-wracking, but Iāve 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 itās very, very important.ā
āGetting up and advocatingāwhether itās for affordable insulin, funding of research, the right policies to protect people with diabetesāis 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.ā
āA 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 youāre successful, people benefit.ā
āAnd that to me is what JDRF is about. JDRF research is not the end. Itās a means to the end. Advocacy is a means to the end. But the end is somebody doing better.ā
āBeing able to afford insulin. Not having to sweat āCan I pay my rent or my car payment?ā 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 productivelyā¦. Itās a critical thingā¦. Because right now, weāre seeing insulināweāve worked with the manufacturersāwhere the prices during COVID have come down. We need them to stay that wayā.
āAnd weāre 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.ā
5. Unity among the T1D communityāincluding peer organizations such as JDRF and Beyond Type 1āis invaluable.
Rob Howe: āI want to talk a little bit about the Beyond Type 1 and JDRF allianceā¦. 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 happyā¦. When people see organizations [that exist in a similar space], they think competition right off the bat. And to see them working together very publiclyāweāre sitting under the JDRF – Beyond Type 1 alliance in this conversationāseeing 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 itās so important for the organizations to work together publicly.ā
Aaron Kowalski: āI 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, āIf youāre running a company, you need to know what you do well, and what donāt you do.ā I think a lot of folks want to do everything. You canāt.ā
āSo this idea of competitionā¦. If we donāt find a cure, or we arenāt funding it, I hope somebody else does! Thatās 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 donāt do?ā
āThe 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 pipelineāmeaning funding research and advocating [for treatments, cures, and prevention to reach the hands of people living with T1D]. Beyond Type 1 is inspiring people. Itās driving a community. Itās a different but very aligned mission. And Beyond Type 1 is not funding researchātheyāre advocating [for people to] participate in research. Do clinical trials.ā
āSo 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 thatās what itās all about to meā¦. The alignment just amplifies all of our voices to get at the problems that weāre trying to address and help people.ā