After more than four years at the helm of the national diabetes advocacy organization JDRF, D-Dad Derek Rapp is stepping down to make room for a new CEO in 2019.

The former Monsanto and startup exec announced his planned departure on Oct. 24. However, unlike his predecessor Jeffrey Brewer who was let go abruptly in mid-2014 without any notice after four years on the job, Rapp will stay on as CEO until the organization completes its international search and names his successor, to ensure a smooth transition at some point next year. The role includes responsibility for a ~$200 million budget and 700staff members in 75 chapters across the country, not to mention the countless volunteers and others who work with the organization regularly.

A lot has changed with the JDRF and the Diabetes Community since he took over four years ago, when we published a two-part interview with Rapp back at the start of his new job. Contributions and research grants remain a challenge, and are lower now than when Rapp took office, but on his watch they’ve steadily inched upward and word is that this trajectory will continue for the foreseeable future.

Rapp’s departure announcement comes as his son Turner (who was diagnosed at age 10 back in 2004) is into his mid-20s and nearing his 14-year diaversary in November. The diabetes dad took some time to talk with us recently about his decision to leave the CEO role, what’s been achieved, what still needs work at JDRF, and where he sees the organization going forward.

DM) It’s been 4+ years since you took this position, but it really doesn’t seem like that long ago…

DR) As far as timeline, yes it seems like it’s gone by fast. But these have been full years that have given us a lot to be proud of in the Diabetes Community. There is a lot of determination and there’s a lot that remains to do.

Why now?

Right now, it comes down to two main factors: We’ve had strong fiscal years and there has been strong growth on the mission side, and we recently completed a new strategic plan that we want to execute going forward. As I look at the need for continuity during the number of years it will take to roll out that strategic plan, the right thing would be to put in a new leader at this point for that continuity. That’s really it.

What have your biggest wins been as JDRF CEO?

Many come to mind as being accomplishments of this organization, and that goes to all the work of the countless staff and volunteers around the country and world. Generally, I’m really proud of the work we’ve done to help people live fuller and safer lives every day:

  • Tech and AP: Progress in technology, such as the first hybrid closed loop (Medtronic 670G) that the FDA says moved much faster than it would have without the JDRF’s efforts. And how that’s paved the way for other systems that will be commercialized in the coming years.
  • Cure and Prevention Research: Exciting progress in immunology, for curing and preventing type 1 diabetes. Where we are now versus where we were years ago is remarkable. Translational research is important, where you must understand a field before being able to apply it, and that’s not always easy to show people in the community who want to see practical results.
  • Clinical Trials: JDRF is funding more than 75 clinical trials at this point in many areas, including immunology and beta cell replacements. We’ve seen how clinical trials with different approaches can show there’s a delay to T1D or lead to beta cell replacement. Not all are successful, but they can lead to different outcomes for different people – further evidence of what we’ve known, that type 1 is a complicated disease and it’s not going to be a one-size-fits-all therapy approach, because we’ll need different approaches for different versions of T1.
  • Medicare Coverage for CGMs: Exciting development in January 2017 that Medicare covered CGMs for the first time, with the Dexcom G5 and eventually expanding that to the FreeStyle Libre, Dexcom G6 and the related smartphone mobile app use. Also, OmniPod patch pump coverage by Medicare came in 2018, as well.
  • Coverage2Control: Campaign that’s helping people have access to technologies and treatments, and how the country’s 25 largest insurance carriers are now providing coverage for the first hybrid closed loop. Without important discussions we’ve had with them along the way, I would be very surprised to see that coverage today in the way they are.
  • The Diabetes Disaster Response Coalition (DDRC): We joined with several other organizations on this, in responding to natural disasters. We have indeed saved lives and helped people in times of dire need, to hang in there.
  • BeyondA1C: This has been one of the most influential shifts within the community in recent years, with JDRF and many other diabetes orgs convening to reach consensuses on blood sugar ranges and moving beyond just the A1C in clinical trials, R&D processes, and how the FDA considers tech and treatments. It paves the way for medications like Zynquista, which is before regulators and looks at time-in-range more than A1C. That’s profound. Their A1Cs may or may not be markedly different, but if we’re helping someone get a better night’s sleep, helping them have more peace of mind, or less long-term stress of having to live with diabetes, that’s going to have a fantastic positive impact on people.

I didn’t do any of this on my own. This has all been a team, and community, effort. I’m glad that so many have come together on different things, and I’m proud to see so much more collaboration in the past five years among those who care about the T1D community.

What’s left undone?

There’s the pithy answer that our work is not done until there’s a cure. But the reality is, that whoever’s in this position or anywhere in the organization, they will desperately seek that day. Anyone who’d leave this CEO office before that day comes, is of course going to feel that’s unfinished and will have a desire to see it happen ASAP. At a high level, that’s the obvious answer.

OK, more practically: What could JDRF do better?

We have to continue to find ways to bridge gaps and meet the needs of people in our community where we haven’t yet been able to do that.

A great example is the T1DFund, which started a few years ago as a way to bridge the value-gap for startups that have possibilities for T1D-related therapies. It’s a way to advance them faster and to a better place than would otherwise happen. At this point, we have 11 companies in which we’ve invested, and in addition to the investment dollars from us, more importantly is helping to validate the opportunities and attract strategic investment in these companies from others. That’s a great way for us to help therapies reach the marketplace. We need to do more of that, to come up with additional approaches where the ecosystem for new diabetes products can be more of a success.

With chapters spread all over the country, it must be difficult for JDRF to navigate the varying needs and priorities of all these people…

Yes, it’s important that we continue to find ways to connect a de-centralized organization. That’s a challenge inherent to having chapters around the country. But it’s also one of the things that makes us special – that we have a physical connection in places all around the country. I realize that it can be more of an inside-answer, but I want to see JDRF be more connected as an organization so we’re best prepared to help the community. The value of the people out in the field and those volunteers is wonderful and they’re amazing people. I was one of them, 14 years ago next month. The calls and other outreach my family received from the JDRF community provided comfort and hope, and let us know people would be with us.

Has JDRF done enough on access and affordability, especially on insulin pricing?

It’s not easy. If it was, we’d have it licked already. I think part of why it’s challenging is that we have a reality of fitting into a broader system of healthcare. We want to see continued innovation in this diabetes space, and we need that in the insulin development area. But my heart goes out to people who are facing the real-world decisions of making ends meet, and everyone knows this is an expensive and burdensome disease.

I think with our #Coverage2Control campaign, we’re looking to the different parties in the financial chain, to take a hard look at what they can do to break patterns that exist today — to see what can lead to more dollars left in the pocket for someone buying insulin. That may be de-classifying insulin on a formulary, or having insulin be deemed an essential medication so it isn’t susceptible to high deductibles. And finally, folks with pre-existing conditions need to have protections and be covered to age 26, and we all need to make sure that’s a priority in advocacy. We need to have those protections in place!

How important has your personal diabetes connection been, with your son Turner who’s now in his mid-20s?

That’s an interesting question that I’ve been pondering recently. I have heard, I don’t know how many times along the way, people say that they really appreciate I’ve been in places where a lot of this community has been at a personal level. It absolutely has helped me in my dealings with this community.

At the same time, I can’t imagine caring less about this organization and mission if I was in this role and didn’t have a personal connection through my son. When someone spends so much time here and focused on this passionate community, it’s quite infectious and inspiring. To see all the people and hear the stories I’ve heard, of people fighting for their kids or those living with type 1 being so brave, siblings doing remarkable things… and on and on. A person would have to be pretty hard-hearted to not to be moved very quickly by this and determined to help in every way possible. So yes, it does help me have certain kinds of conversations with people that maybe I couldn’t otherwise, but I would invite anyone to spend time in this role and not become incredibly touched by this community and the difference we’re making.

What’s next for you professionally?

I’ll be staying on the JDRF board after the search is completed and a new CEO is named. But until then, it’s a priority to make Fiscal Year 2019 a really great year for JDRF. I’m not being coy, that really is where my focus is right now.

Thanks for all you’ve done for JDRF and the D-Community, Derek! We look forward to seeing what’s ahead with the transition to a new leader.