Today, we bring you the second half of our interview with Derek Rapp, who was recently named JDRF's new CEO to replace the beloved Jeffrey Brewer. He too is a D-Dad and has a 20-year-old son who was diagnosed with type 1 a decade ago, along with several other family members with type 1.
We would have preferred a live interview, as it helps to ensure responses aren't "pre-scripted statements" but are more candid and allow for follow-ups when necessary. Still, we do appreciate the time Derek took for this email Q&A to address many questions for the D-Community. In Part 1 of our interview (published last week), Derek told us about his personal connection to diabetes and how he views the JDRF overall as an organization. Today, he delves more deeply into just where he thinks the nonprofit org is going and what he thinks it takes to move forward.
Interviewing D-Dad and JDRF CEO Derek Rapp (Part 2):
DM) It's a key time, with so many exiting research projects being on the cusp of real tangible progress -- AP/Bionic Pancreas, encapsulation, new stable glucagon and smart insulin. What do you make of all this?
DR) Science in the 21st century is allowing us to discover and understand things we didn't dream were possible. We have amazing possibilities for breakthroughs in T1D and on a personal level it gives me hope that my son will not have to live with this disease his entire life.
We actually do not think it is a difficult road to navigate. We won't choose one option over the other because both are equally important to the many people affected by this disease. We believe "the cure agenda" only works with people healthy and safe. We are funding at the basic science level and we are still a cure-focused organization, one is not taking over the other. We are still heavily invested in curing T1D.
We saw recent news about the Novo partnership on education outreach relating to exercise... that seems really outside the usual cure or tech research realm JDRF is exploring. Is there a move to focus on more of that kind of "lifestyle initiative" now?
We have always stressed the importance of staying healthy on the way to a cure. The fact is if people are not healthy when a cure arrives, it won't do them much good. So programs like the PEAK partnership with Novo are very much a part of the cure.
As part of JDRF's re-branding in recent years (eliminating "juvenile" in its name), we've also seen the word "cure" being removed from some program titles. What's that all about?
As you know, we've embraced the concept of "Turning Type One into Type None" as a core message. Clearly, this means our focus is on curing T1D. We have not reduced our commitment to that end and, in fact, we are doing amazing and exciting work in the field of beta cell biology, beta cell restoration and regeneration, and immunology, all of which are consistent with our ultimate goal. The notion of TypeOne Nation and One Walk is to convey the sense that we are all in this together.
JDRF has and will continue to play a vital role in advocating for people with type 1 diabetes to have access to cutting-edge treatments that can save lives and lessen the impact of the disease. If key advances aren't reimbursed by insurers and the government, people won't see the benefits to their health. We were instrumental in conducting the pioneering CGM-effectiveness study that provided the hard data insurers needed to make a positive reimbursement decision on continuous glucose monitors. Now, JDRF is also playing a key role in advocating for passage of forthcoming legislation that would allow Medicare to cover CGMs so that seniors with T1D won't lose access to these devices when they transition from their private insurances plans. JDRF expects to play a similar leadership role in securing reimbursement and access to the flow of novel drugs and devices that result from the research we support on behalf of everyone affected by T1D.
JDRF clearly understands (better than most healthcare research funding organizations, I would say) that in order to have the impact we desire, we need to do more than fund research. The discoveries, treatments and therapies that flow from our funding need to be available, accessible, and affordable to the entire T1D Community. So, for example, reimbursement issues are an important part of our advocacy agenda. In fact, Senator Susan Collins of Maine and Senator Shaheen of New Hampshire introduced legislation (at the end of July) to ensure Medicare coverage for continuous glucose monitors. As you know, as part of JDRF's Artificial Pancreas project, we have been a leader in advancing health insurance coverage for CGM, and as a result nearly all private plans cover the technology. Medicare lags behind, however, leaving those with type 1 age 65 and older vulnerable, and creating obstacles for artificial pancreas systems.
Our fundraising has remained steady and strong for most of my service on the Board, though of course like every nonprofit we took some hits during the financial crisis. Looking ahead, one of my top priorities is to take steps to supercharge our fundraising and development programs. I want us to be proactive and creative with our current events like walks, galas, and rides, with our leadership giving, and with other innovative funding vehicles such as corporate collaborations. Successful fundraising is the lifeblood of JDRF, and I am committed to ensuring that the organization is considering a myriad of opportunities to be innovative and raise ever more funds to drive the exciting research we have in the pipeline. We owe that to our community.
The Helmsley Charitable Trust has been a driving force in T1D advancements in recent years. What's the nature of their relationship with JDRF?
Generous support from and partnerships with organizations like ours with The Helmsley Trust enable JDRF to spearhead research that will lead to life-changing therapies, and ultimately a cure, for T1D. We are committed to strategically leveraging our financial and organizational resources on behalf of the millions of people who live with this disease. Since 2009, Helmsley and JDRF have jointly provided nearly $67 million to support multiple significant projects that aim to accelerate the development and availability of better treatments, devices, and diagnostics for T1D. Helmsley has provided $32 million towards these collaborative initiatives.
During 2013, JDRF and Helmsley funded major projects spanning the portfolio of T1D research areas including the JDRF Helmsley Sensor Initiative to advance continuous glucose monitoring accuracy and reliability towards the next-generation artificial pancreas systems, novel biomaterials and encapsulation concepts for next-generation beta cell replacement products, and innovative prevention strategies. JDRF is proud of this accomplishment and we are open and anxious to work with other parties (including funders, universities, and companies) as we all try to achieve a world without T1D.
All organizations evolve and grow, and I think we will as well. But our focus will remain as it is today: delivering life-changing therapies to those living with T1D so we progressively reduce the burdens, pain, complexity, and complications associated with the disease until we have cured and prevented it. I am absolutely convinced that five years from now we will be closer to achieving at least some of these goals. I can tell you what won't change as long as I'm involved: we will remain an organization with strong and effective relationships between volunteers and staff with a culture of inclusiveness... and we will always be working to expand a community of caring, passionate, and engaged people living with T1D.
We will still be an organization that is grounded in excellent science, but with a focus on ensuring that this great science can lead and is on path to lead to wonderful and impactful products for people with T1D.Finally, we will be working to advocate on behalf of the T1D Community with regulators, health insurers, research companies, and other audiences where our efforts can make a meaningful difference.
Thanks again, Derek, for taking the time to answer all questions in writing. We agree that it's an exciting time in the world of diabetes research and technology, and we look forward to supporting JDRF's great efforts.