Derek Rapp Named Permanent JDRF CEO

By Kelly Close, Adam Brown, Emily Regier, and Sally Kim.

Twitter Summary: @JDRF names Derek Rapp permanent @JDRFceo - our exclusive interview on future of #type1 #diabetes

Today, JDRF announced internally that the Board of Directors has named Derek Rapp the organization’s permanent CEO. The news follows his eight-month tenure as interim CEO – Mr. Rapp’s initial appointment last July was expected for one year, and it says a lot for this leader that he got the position so early! Clearly, he has won the Board’s confidence in his ability to steward the organization in a positive direction. Certainly, there are many roles he has outside of broad management – working with so many regional, volunteer, and board leaders, fundraising, advocacy, partnerships, senior staff, etc. In seeing him speak at several public venues recently, we’ve been particularly impressed with Mr. Rapp’s style and approach, which mixes personal experience as the father of a type 1 son with business savvy and comfort with science.

Following our initial interview with Mr. Rapp last July, we had a chance to speak at some length with him about what he’s learned as interim CEO, his vision of the organization in the coming decade, and his thoughts on the treatment and care of type 1 diabetes. Mr. Rapp expressed clear optimism and excitement about all the opportunities JDRF could invest in, though he was candid about the fact that the JDRF cannot fund all the promising research out there. Like his predecessor, Mr. Jeffrey Brewer (now CEO at startup Bigfoot Biomedical), Mr. Rapp also emphasized the need for JDRF to do far more than research – as a result, the organization is investing much more in areas such as advocacy, particularly ensuring products are approved and that patients have access. There’s no doubt Mr. Rapp is an outstanding fit for the position, and we’re highly encouraged to see him at the helm of JDRF.

diaTribe’s Exclusive Interview with Mr. Derek Rapp

• Biggest Lessons from Eight Months as JDRF’s Interim CEO

• JDRF Fundraising, Priorities, and Expected Changes

• The Future of Type 1 Diabetes Care

Biggest Lessons from Eight Months as JDRF’s Interim CEO

KELLY CLOSE: Congratulations, Derek – this news is not a surprise to us, but how amazing for us as advocates, supporters, and followers! JDRF has been such a notable model, and the CEO of this organization is such a big job. In thinking about all you are doing, it’s really night-and-day in comparing now to a decade ago. 

DEREK RAPP: Thank you. It is an incredibly gratifying job. I am motivated and inspired in ways that I never have been before.

ADAM BROWN: That’s wonderful to hear. Big picture, what has been the biggest surprise during your eight months as JDRF’s interim CEO?

DEREK RAPP: There is no way I could have known how moved and inspired I would be in my dealings with everyone in this community. Obviously, I’ve been in it for a long time and active in different ways. But it’s been incredibly gratifying to be in this role and see the support that comes through from so many people. From an activity standpoint, I have not been in a professional fundraising role before. I expected to enjoy it, but it is extremely interesting and satisfying – I really, really like fundraising a lot.

ADAM: That’s great for all advocates to here. What do you most enjoy on a day-to-day basis in your role as CEO?

DEREK: Overall, this job is a fantastic one. There is so much variety, so many challenges, and I’m so focused on a mission that means so much to me personally. The reason I enjoy fundraising so much starts with the fact that I believe so much in JDRF. I enjoy knowing that the people I’m meeting share my belief that our mission is extremely worthwhile. I’m confident that we as an organization will steward their money in really impactful and responsible ways. The value proposition JDRF brings is extremely compelling. And having a chance to share that story with others is fun, interesting, and exciting. It’s not an unusual thing for both of us to be moved to tears. It’s an amazing experience.

EMILY REGIER: Switching gears a tiny bit, can you tell us what the one question is that you’ve most asked yourself as CEO thus far?

DEREK: How can we do all that we want to do? We have tremendous opportunities to make a huge difference. Those opportunities are quite varied, and we need to make tough choices. We need to decide the sequence of those things we need to do, all with the intent of carrying out our mission of eradicating T1D. It’s hard – how can we do all that we want to do?

EMILY: Did you expect that coming in, especially with your time on the Board? Or has that question changed over time?

DEREK: I expected it to a fair degree. What has changed – even since that time – is the scientific progress we have seen, along with some of the opportunities on the advocacy front. If anything, our mission is more enhanced and broader than we could have envisioned not very long ago.

SALLY KIM: There’s so much for you and your team to do. How have you divided your time thus far? Has it been different than what you expected and how do you make those decisions?

DEREK: My time is split into four main areas (in no particular order): fundraising, administration, strategy setting, and external relations. Reflecting on it, I bet my time is fairly evenly split among those different areas.

JDRF Fundraising, Priorities, and Expected Changes

ADAM: Last July, you shared with us that your biggest priority as CEO was to ensure that the team could continue to do the work they were already doing. As you’ve looked at the organization, have certain new things risen to the top of the priority list?

DEREK: We have research, advocacy, fundraising, and core functions – we need to be excellent in all of these areas to carry out our mission. We need to be excellent at them to deserve the right for us to seek funding from people who obviously are determined to see our mission met – whether by JDRF or some other means. I often talk about the virtuous cycle – we need to raise money in order to have the opportunities to create the mission successes, to have an ever more compelling story to people who want to support our efforts. It’s hard for me to say that one area rises above another in terms of excellence.

All that said, it’s no secret that we have not been as successful in fundraising in recent years as we would have wished to be. A few months ago, we made some changes in our development team in both structure and leadership. We’re going to keep working to do better as an organization in this area. The possibilities for JDRF to make a tremendous difference are so exciting right now. I want to make sure we are as resourced as we can be to carry out the great science and see that patients benefit from it.

KELLY: That makes a lot of sense. Can you share with us what factors in the external environment are influencing fundraising efforts?

DEREK: Fundraising in general has been roughly flat over the last couple years. That’s not satisfactory. We need to raise more. This question may be better asked for people in development, but we need to help people understand how the work that we’re doing is going to impact their lives. That includes collaborating effectively with all kinds of organizations in the type 1 diabetes space and otherwise. This ties into things we are working to do differently. We want closer relationships with clinical organizations and with other funders of type 1 diabetes. JDRF obviously cannot get all this done by ourselves. We need to work effectively with other organizations that have missions that are complementary and compatible, in some cases overlapping, with ours. In that way, we will show donors that in supporting us, they’re supporting the broader mission. That makes us a more compelling place for their support.

ADAM: At the terrific outreach event you spoke at in Silicon Valley last month, you talked a bit about two new strategic priorities for JDRF: driving adoption of technology and focusing on the underserved. Can you share more about them?

DEREK: We are in a strategic planning process right now. Generally speaking, it’s not enough to be great in the funding of research. We have to make a difference for people. As you know, only about 20% of people living with type 1 diabetes in this country have an A1c at or better than the recommended level. When you look at the Venn diagram of the three measures – cholesterol, high blood pressure, and A1c – only about 3% meet all three. We know that people living with this disease need to do better. When we as an organization think about making a difference in patients’ lives, we think about some specific measures such as lower A1cs, fewer incidences of DKA or severe hypoglycemia events, and a reduced burden to people and their loved ones.

I think there are many opportunities to see living with this disease get better. These opportunities come from a combination of better therapies and true access. Think about the continuum: we start with the science, science leads to product candidates, product candidates have to be picked up by a commercializing party, the commercializing party has to go through product development and regulatory steps, and regulatory agencies assess and ultimately approve those products. Then we need the payers and healthcare reimbursement parties, whether that is Medicare and Medicaid or different companies, to recognize the benefits of improved care and therefore provide the reimbursement that allows access. Then the health care providers need to understand the benefits of these therapies so they can prescribe them in the right way. Finally, we need patients who will adopt and stick with therapy.

That’s a lot! I just took you through many steps that are required for patients to see the full impact. So again, for us to only focus on the science is not enough. How JDRF plays in the different steps along that continuum from test tube to patient is and always will be an open question that is situation dependent. You’re seeing already that JDRF has moved downstream increasingly and I expect that to continue. In the early days of research in this field, a lot of the focus was on discovery because that’s all there was. Now we see opportunities that are moving into the different steps of the continuum, and therefore there is a need for JDRF and others to work to see the advances come to full fruition.

The underserved also ties to it for sure. An example – albeit narrow – is the bill in Congress for Medicare to provide coverage of CGMs. What an irony that at a time a person most needs a CGM, that person loses coverage. The longer a person lives with type 1 diabetes, the more likely he or she is to become hypoglycemia unaware. We also talk to private companies and help them understand how it’s in their best interest to provide the reimbursement to cover these therapies.

EMILY: Thank you. If JDRF magically quadrupled its fundraising tomorrow, what would you be most excited to invest in?

DEREK: If that wonderful day happened, I would walk down the hall and ask Dick Insel, Aaron Kowalski, and the rest of our research and advocacy team for a lot of help. They are the experts. I would want them to lead the determination in conjunction with our board and our research and advocacy committees. We have processes and professionals who are ready to take full advantage of such an opportunity. The reality is we have a sizeable gap today between the funds we have available for our mission and the compelling opportunities to carry out that mission. Projects become more expensive as they move into clinical trials and commercialization. That also leads to additional advocacy roles to play. So the major part of the answer is that we would be doing a lot more of that which we are already doing. We would just do it at a bigger scale and increase the likelihood of success and shorten the time to market for products.

Beyond that, speaking personally now, I would hope to do more to understand the fundamental mechanisms in not only type 1 diabetes, but also autoimmune diseases in general. It’s so striking when I speak with groups and ask them, “Raise your hands if you have people with diabetes in your family” – a bunch of hands go up. Then I ask them, “Raise your hands if you have people with autoimmune diseases in your family” – and again, lots of hands go up. When I dream really big, I dream about some of the work that we’re funding unlocking some of the mysteries of the fundamental mechanisms of autoimmune diseases. So the work that JDRF is doing will have very broad implications for so many diseases.

KELLY: We very much agree. How do you think JDRF as an organization will be different in five years?

DEREK: It will be more collaborative and more connected to the other parties we work with, and be involved in more activities downstream on that continuum. I think we will have more funds to drive toward our mission because it is so compelling and we’re seeing so much progress. There will be more commercialized device systems that allow for better outcomes. There will be more clinical trials, and I’m hopeful that some will be very successful in marching on toward commercialization. I’ll acknowledge that we expect that not all of them will be successful. We’re a dynamic organization and a learning organization. We have to, while having an overall vision and mission in place, be responsive to opportunities and also recognize setbacks along the way and make sure we’re setting ourselves up to be more impactful.

ADAM: Got it. What worries you the most as you think about the next year, three years, ten years of JDRF?

DEREK: I have two worries. One is that we won’t be able to fund all the activities that we want to. I’m an optimistic person, and I would say given the choice of having too many opportunities or too few, I’ll take too many every time. It’s unfortunate that there’s great work we can’t fund, but I would much rather be in that position than having funds that we couldn’t figure out what to do with. We’ll continue to work to deliver the most compelling proposition we can to do as much as we can.

The second worry is that in the T1D community, there is a lot of excitement – as there should be – about different activities. There are so many clinical trials – more than 50 funded at some point by JDRF and lots more beyond that. I know our community is really hopeful that we will see great progress. But everyone needs to look at all the activities as a portfolio and recognize that there will be some hits and some misses. If people hear about one specific opportunity where the results are disappointing, it would be such a shame for people to be terribly discouraged. It’s one opportunity among many and even in areas where there are setbacks, that doesn’t have to mean the end of that area, just that we’ll perhaps need to apply some learning to see success. We have a number of projects we’re funding: artificial pancreas, encapsulation, beta cell regeneration, prevention, complications, etc. We don’t just have one; we have multiple shots on goal right now. I hope our community is ready for that and understands that even in disappointments, there can be advances.

EMILY: We do too. Do you think there’s a misunderstanding of how hard this is?

DEREK: I think there’s a lack of understanding of all the steps that go into commercialization of a product. That’s my personal opinion. For the average drug, it takes – I believe – 14 years and a large amount of funds to commercialize. We also know the disease’s biology is challenging. In fairness, as a parent, there is a lot of hope because we care so much about this work.

The Future of Type 1 Diabetes Care

EMILY: Another big picture question, Derek – as both a parent and as leader of the most influential nonprofit in type 1, what do you think is most missing in the care of type 1 diabetes?

DEREK: I think there’s not a great understanding of the disease among the broader public, whether it’s confusion between type 1 and type 2 diabetes or a lack of understanding of autoimmune diseases – even though people are surrounded by those affected by them. What’s missing is an understanding of how important great management of the disease is and how challenging that is. Parents ask me about living with the disease, and I say, “Don’t let the perfect be the enemy of the good. Don’t hold yourself or your child to too high a standard, because it’s very challenging. You don’t need to make a tough situation even tougher.” What’s missing is an understanding of how we in our whole lives have to deal with this disease in a way that’s most effective for our whole lives. Type 1 diabetes is a disease that affects the entire family. I don’t mean that to sound less compassionate toward the people living with it, but because the rest of us care so much about the people who have it, it affects us significantly. What’s missing is an understanding of how we can be as effective in management and living as possible. I’m grateful that I see different organizations that are recognizing this and taking it on. JDRF has a role, and we will do that in partnership with others.

ADAM: So you touched upon something we talk about all the time here at diaTribe. On the one hand, type 1 diabetes is a very dangerous disease, and you’re asking people to manage and dose a very dangerous drug every day. On the other hand, you want to give people hope that this is manageable and you can thrive with type 1 diabetes: you can run marathons, climb mountains, etc. Can you comment on that balance from the JDRF perspective?

DEREK: I struggle with the balance between telling patients what heroes they are – and I don’t use that term lightly – and showing them that yes, this is a disease that at the least is a tremendous burden and at most is lethal. Type 1 diabetes is a terminal disease, and we’ve found a way to ward off death. It’s important that people understand this and see both sides. When we have marketing campaigns, sometimes we hear that we’re not showing how hard this is, and then we hear from other people that we’re not showing what heroes people are. It’s a tricky challenge. I’m the father of a guy who’s going to run his second marathon in the last six months or so; he’s doing great and I’m so proud of him. I have a younger son who’s been in a clinical trial for four years, and he’s working to be a person living his normal life too. I admire him so much too. I see the fact that they persevere. You have to help people understand both sides of life with this disease and sometimes emphasize one piece more. They’re both very real and very important.

ADAM: That brings to mind another challenging balance for our community – you want there to be a very clear distinction between type 1 and type 2 diabetes because the two diseases are very different. On the other hand, you want to get the attention of decision makers, and partnering with organizations focused on type 2 diabetes can be really important for getting their attention. What are your thoughts on that?

DEREK: Our focus is on type 1 diabetes. I say that not in any way of wanting to be exclusive in our collaborations. We collaborate with a number of institutions that are active in both type 1 and type 2 diabetes because that’s how we will get the most leverage out of our overall activities. When a therapy is applicable to type 1 and type 2 diabetes, we should all be working together to make that happen. When there’s a lobbying position in DC to help people understand the challenges and complications, we should take advantage of that. Those are specific examples among many. As an organization, our focus will be on type 1 diabetes, and we will work with the broader diabetes community in every way it makes sense to do so.

EMILY: That’s so great to hear. What do you think will be the biggest differences in type 1 diabetes treatment in ten years vs. today?

DEREK: I’m going to punt a bit and not be specific on the time; I don’t want to be held to ten years exactly. I’m excited about prevention. I believe the time will come when we will prevent this disease. How exciting was Janssen’s announcement about their disease interception unit focusing on type 1 diabetes as one of the first diseases? That was deliberate; Janssen said, “This is an area where there is such a body of information that we can get our arms around it and make a real difference.” It’s presumptuous of me to speak for Janssen but I hope they would agree.

We talk about primary and secondary prevention, and how exciting would it be if at some point, there was a means of determining who’s at risk and significantly delaying if not fully preventing the disease? In case you’re not familiar with those terms, primary prevention means prevention for everybody, similar to the prevention of measles/mumps/rubella or polio that we have now. Secondary prevention is for people like our son – preventing the disease in someone at risk, who has known antibodies or has maybe been shown to have compromised pancreatic function, whose glucose tolerance is “iffy.”

So I’m excited about the possibility of preventing this disease. For the majority of people with type 1 diabetes, it’s difficult to figure out a genetic link. That feels foreign to me as someone that has so many family members with the disease, but that’s the case for most people. So it’s important to get to primary prevention for people who would never get tested.

In a ten-year period, I’m also convinced we will see some therapy – whether devices or other means – that will be readily available for people and lead to excellent control of glucose with a significantly reduced if not eliminated need for daily management.

ADAM: The silence is us thinking about that day and what it will feel like! [Laughter]

DEREK: When our son was diagnosed, we were told the disease would be cured soon. I hear lots of people talk about that. People have to be ready for disappointments. There are so many areas showing progress that I feel very confident that we will see at least some means of managing this disease that will dramatically lessen the burden.

KELLY: Do you have any big-picture comments about newer groups like NightScout and Tidepool – people, especially parents with lots of experience on the technological front, who are, if you will, taking things into their own hands?

DEREK: As a parent, I understand peoples' desire to expedite progress in any way they can. When they see technology available – we’re all walking around with cell phones – and they understand there’s an ability to communicate information, it’s a logical thing to make it happen. We’re at an interesting time where we see convergence of a couple of really big trends, namely big data and personalized medicine. With big data, we see in a lot of industries – and starting in type 1 diabetes – the pooling of data and extrapolating to learn from that data and apply it in a number of settings. That makes great sense. With personalized medicine, people are taking advantage of specific information and learning so they can benefit from their own past experiences. I think these are very exciting trends. We recognize that and through the support of organizations like Tidepool and Livongo, we’re helping to some extent to advance them. They will continue for sure and that’s great.

There is, I admit, a caution flag in that we know the science is challenging and some therapies can have consequences. That’s why we have an FDA. Throwing information onto a phone is one thing, but administration of a drug is something different, and I can’t help but worry that there may be some tragic consequences at some point associated with the actions people take with the best of intentions.

KELLY: There are also so many tragic events people don’t know about. How many people had severe hypoglycemia this morning? How many deaths happened last year? I don’t know that the tragedies happening every day have always been made very clear...

DEREK: Yes, though we still need to see products go through channels to confirm they’re safe for the well-being of everyone affected. We need to see a market for those products to be broadly available. I would hate to see a situation where a great therapy that’s the result of some sophisticated engineering feat would be available to only a small number of people. We need access.

KELLY: As would we. Derek, thank you so much for the time you have spent with us. We really appreciate it and are so excited to see you at the helm of this increasingly important organization at such a critical time. Thank you so much for being such an inspiration, with your amazing teams across the US, internationally, and at headquarters in New York. 

DEREK: Thanks to you and your team! We so appreciate in particular what diaTribe is doing on the education and advocacy fronts – I look forward to seeing you soon!