The tides are a changin' at two of the top diabetes orgs, with both the JDRF and the American Diabetes Association getting new leaders this month for the first time in years.
Whoa, both at the same time... is there something in the water?! And should we be concerned about what this means for the diabetes community in terms of how these key organizations will move forward on important issues like research, technology, patient access, legislation and other advocacy?
Short answer: We can assume the two departures are just coincidental timing, but where exactly Big Red and Big Blue are headed from this point remains To Be Determined.
We're expecting to publish an an exclusive Q&A with the new CEO of JDRF very soon, along with learning the identity of the interim ADA leader, so stay tuned! For now, we're reporting what we know from the outgoing guard. Bear with us, it's long... but hey, this is big!
This past weekend, word began circulating online that beloved D-Dad Jeffrey Brewer, who's been leading the type 1 diabetes org since mid-2010, was being replaced as JDRF CEO. He posted on Facebook:
New JDRF Board Chair notified me on Friday that they'd like to go in a different leadership direction. So my role in the fight against T1D will necessarily change. However, I'll still be committed to our shared mission. I'm proud to say I leave JDRF better positioned to pursue our mission. It's been an honor to lead JDRF, an organization indispensable to the T1D community. Thank you to all the wonderful staff and volunteers with whom I've worked side-by-side for the past four years. Your passion and accomplishments have inspired me every day. I have no doubt that your continued passion will create a world without T1D.
On Monday morning, the JDRF officially announced the new CEO would be Derek Rapp, a St. Louis biotech industry leader who's been a JDRF board member since 2010 and also has a son with type 1. His son Tyler was diagnosed a decade ago at age 10, and Rapp's been working his way up the volunteer and leadership ranks of the diabetes org ever since.
He joined the JDRF International Board in 2010 (the same year Jeffrey Brewer moved from the board to the chief executive spot), and he's served as research chair and on various committees -- research, development, advocacy, lay review, and strategic alliances. Most recently in January, he became vice chair of the international board. And now, he's become CEO. His wife Emily is also actively involved, recently serving as board president of the JDRF's Greater Missouri/Southern Illinois chapter.
Professionally, Rapp has spent most of his career working for the AgriFood company Monsanto Co., and is now leaving his position as head of mergers and acquisitions there. He'd worked his way up the Monsanto ranks between the late 80s and 2000, before becoming CEO of biotech research company Divergence that eventually merged with Monsanto and took him back to the AgriFood giant in early 2011.
Interestingly, this isn't the first JDRF leader to come from the St. Louis area or from the corporate ranks of Monsanto, either -- another Missourian named Arnold W. Donald led JDRF from 2006 to February 2008, replacing Peter Van Etten who'd retired after six years. As our D-blogging friend Scott Strumello has reported before, the JDRF has had a number of other leaders from industry following Donald's short tenure: Dr. Alan Lewis began in January 2009 after coming from biomedical startup NovoCell (which became ViaCyte that's currently making big diabetes news), though he didn't stay long until Jeffrey Brewer began in June 2010.
So now, we have Derek Rapp as the JDRF's fifth CEO in a decade, potentially opening up a new chapter in JDRF strategy going forward.
International JDRF Board Chair John Brady, who has a 25-year-old son who was diagnosed at age 3, offered this response to our questions about the shift:
DM) Why the change in leadership direction?
JB) All organizations evolve and go through leadership transitions, and it was time for such a transition at JDRF. Jeffrey was the right leader for us four years ago. We have made clear that we celebrate the contributions he has made to better position JDRF to accomplish our mission.
When Jeffrey agreed to become CEO, it was with the understanding that he would stay as long as it took us to reset our research strategy, our fundraising strategy, and our management and governance systems. Four years later, thanks not only to Jeffrey's leadership but also the vision and passion of our Board, our amazing staff, and our army of volunteers, most of these goals have been accomplished, so we felt it was an appropriate time for a transition to new leadership.
Looking forward, we felt JDRF would be better served with someone with Derek Rapp's unique set of skills and experience. We strongly believe he will help us generate the resources we need in the years ahead to accelerate progress on delivering better treatments and an eventual cure for T1D to our community.
As for decision-making process, I will say this: I have a son with T1D. I hate this disease as much as anyone. And those who know me will tell you I am a pretty impatient guy. I think the same can be said of every member of our Board. Virtually everyone involved has a loved one with T1D. I can tell you that every decision we make is predicated on the singular question of whether it will get us closer to a cure. We believe Derek Rapp is the right leader to take us forward to achieve that objective.
There has been a divide in the community at times over the path toward a cure or Artificial Pancreas and technology -- did this play a part in the leadership change?
No, not at all. It has never been accurate or logical to suggest these goals are in conflict. Our goal is to create a world without T1D. But significant advances in scientific knowledge have taught us that there will be no single "eureka" moment that will cause T1D to vanish all at once. So JDRF's strategy is to make T1D less burdensome, less dangerous, less painful, and less invasive. AP systems are an integral part of delivering transformative and life changing treatments on the path to a cure.
Will anything change on JDRF's current priorities, such as investing in Artificial Pancreas technology?
Nothing will change in terms of our research strategy or our mission. We remain as committed today as we did a week ago to a program that will progressively remove the impact of T1D from people's lives and achieve a world without T1D. In fact, Derek Rapp has played an instrumental part in shaping and implementing the strategy, through his work on the Board, as Chair of the Research Committee, and as a member of our Strategic Advisory Committee which has overseen the various pharmaceutical, biotech, and nonprofit partnerships we've forged to translate research into therapies and treatments getting in the hands of patients.
What can we expect from Derek Rapp's leadership?
What we expect is a passionate, committed, driven CEO focused on supercharging our fundraising and accelerating progress toward our goals. Derek is a listener, a consensus-builder, a strategist, and someone with a keen understanding of the decision drivers for companies in the life sciences area, which is obviously hugely important to successfully implement a translational research agenda.
Monsanto has been embroiled in controversy over genetic and natural food issues... Won't this present JDRF with an image problem or evoke concern from people in the diabetes community?
To insinuate that Derek is not qualified to lead JDRF because of his past employment with Monsanto is not only unjustified, it's pure nonsense. I find it offensive. Derek's reputation is impeccable and his leadership qualifications and commitment to JDRF's mission are unrivaled. He has a child with T1D, along with several other family members, and has seen up close and personal the way this disease can ravage a person and a family. He takes a backseat to no one... in his commitment to curing T1D. I don't pay attention to cynical people advancing their own political agendas on the backs of people with T1D.
* * *
Some may not be concerned about the Monsanto ties of the new CEO, but clearly others are -- in just the first days after the appointment, discussions about Rapp's past at the controversial AgriFood biotech company have been popping up online. And a quick Google search brings up this past Change.org petition asking that Derek Rapp and any "Monsanto influence" be removed from JDRF.
Others on the inside of JDRF echo what John Brady told us above about Derek's passion, and we were privileged to speak by phone the other day about this with Dr. Aaron Kowalski, a fellow longtime type 1 PWD who's in his 10th year with the organization and leads the Artificial Pancreas division.
"It's hard to see someone as strong as Jeffrey move on, but we're fortunate enough to have someone like Derek to take us into the future," he said. "Derek is an amazing guy, super smart and has a great background in knowing how to work with companies. I'm looking at this from a glass half-full perspective."
As to what's next for the JDRF and its research focus, Aaron says this: "I don't frankly expect big changes."
During the past decade, JDRF has restructured how it fundamentally thinks about research, expanding beyond a strictly academic focus that didn't address the "now what?" question relating to regulatory and industry commercialization. The change has been a boost to Artificial Pancreas development during the past several years, and Aaron sees that continuing into all areas of research like beta cell regeneration and encapsulation, smart insulin, and beyond.
"We have really grown up over the years and we have so much to thank Jeffrey for," he said. "Really, Jeffrey teed us up to be successful at our mission, and now Derek is going to take that energy and drive us forward."
Being big fans of Jeffrey's it's tough to see this news. No doubt he's made an incredibly impactful footprint in our lives, and many of us credit him with pushing the organization to do better embracing Adult Type 1s in recent years, while also making more moves to help quicken the pace of new technologies as we continue researching a cure.
But at the same time we're optimistic given all the praise we're hearing about Derek from both inside and outside the JDRF ranks. We look forward to hearing directly from Derek soon.
** July 25 Update: The Juvenile Diabetes Cure Alliance released a report showing JDRF research grants hit a 10-year low in 2013, down 30% since 2008 while non-research grants increased.
Changing Guard at ADA
On the heels of JDRF's news, ADA is going through a shift of its own -- as CEO Larry Hausner is stepping down as of July 31, after nearly seven years at the helm. Larry has also been a transformative figure for the ADA, just as Jeffrey's been at the JDRF, meaning many of us in the patient community have felt much more welcomed and more included in the conversation with ADA since he took over. Under his direction, ADA jumped into Social Media with both feet and became very interactive with the Diabetes Online Community, which of course is heavily populated by Adult Type 1s.
Larry has a number of accomplishments to tout -- his work in launching the Stop Diabetes movement, creating improved brand awareness for the organization and diabetes cause, developing and launching the Pathway to Stop Diabetes research program, growing the Safe at School program, and all of their work lobbying for diabetes causes in healthcare reform debates. He also helped improve inclusion and diversity for the organization, bumping the board's diversity representation from 18% to 42%.
We've had a great relationship with Larry through the years, chatting with him on many occasions regarding everything from ADA strategy, to the controversial Paula Deen to how the ADA views the Blue Circle, as the aspiring universal symbol for diabetes.
If you remember, Larry took over ADA in October 2007, following Michael D. Farley, who served for several months as interim leader after Lynn Nicholas resigned in late 2006 to pursue other interests. She was a hospital administrator who started in May 2004, and after the ADA she went back to that field. Before her, John H. Graham IV had served for 13 years before leaving in mid-2003.
When the ADA announced Larry's upcoming departure, the org said a new interim leader would be named by mid-July and more details on the search for a new permanent CEO would be coming soon. As of Wednesday afternoon, the ADA told us there's nothing more to announce on that front... so we're all anxiously awaiting word on what comes next once Larry steps down.
** July 28 Update: The ADA named Suzanne Berry as the interim CEO, until a new permanent leader is found and appointed.
Still, despite some of our D-Community's enthusiasm about Larry's work at the ADA, there are always critics. Hey, running a huge national non-profit isn't easy! Some of the critical reports include: Harsh Criticisms for the ADA at Diabetes Wellbeing; this Shameful or Shameless? post on BlogCritics; a PR Week article on Larry Hausner as a DC-influencer; and complaints about ADA as an employer, shared over at the corporate transparency hub Glassdoor.
Larry has been largely off the radar since the announcement, but he graciously offered a few thoughts to us in a quick email Q&A:
DM) How has ADA changed in your 6+ years at the helm? And what do feel were your biggest/proudest accomplishments?
LH) I am particularly proud of our efforts to increase awareness about diabetes through our Stop Diabetes® movement; the introduction of a successful diversity and inclusion initiative within the Association, the development and successful launch of our innovative new research program, Pathway to Stop Diabetes, the growth of our Safe at School program, and our successful efforts to protect the rights of those with diabetes during the debate over health care reform. These achievements are a testament to the powerful volunteer-staff partnership that lies at the heart of this organization.
What are the biggest challenges ADA is facing now -- as an organization (not necessarily re: ACA and access issues)?
Over the past few years, the Association has seen operational expenses for mission activities, infrastructure and fundraising activities increase. Unfortunately, our revenue growth has not been able to outpace expenses. This is a challenging time for all non-profit health organizations, but we are confident that with the continued support of our donors and volunteers, we will continue to successfully advance our mission in support of the nearly 30 million people living with diabetes.
What do you hope your ADA leadership legacy will be?
The accomplishments listed above plus the fact that the ADA has become more of a collaborator in this space.
Collaborating with whom, on what, for example?
An excellent example of collaboration success is with the Preventive Health Partnership (PHP), the ADA's collaboration with the American Cancer Society and the American Heart Association. Through this collaboration, we have done good work together in the fields of outpatient quality improvement, international health, promotion of physical activity in schools and worksite wellness.
Another important collaboration during my tenure came out of a key goal in our Strategic Plan to implement strategies to increase the diversity of the ADA's workforce and volunteer leadership. Knowing that other organizations may have a similar goal, I invited several health-related nonprofits to work together to conduct a benchmarking study that could help to inform all of our strategic diversity management efforts. Six organizations agreed to participate including the Alzheimer's Association, American Cancer Society, American Heart Association, Arthritis Foundation, Leukemia & Lymphoma Society and the National Multiple Sclerosis Society. Doing this together, we were able to learn more about each other's practices and approaches.
I also commend the good work of the many organizations that collaborate with us to spread the word about the seriousness of diabetes when we hold two of our biggest awareness building activities of year — American Diabetes Association Alert Day in March and American Diabetes Month in November. Last year, through the help of organizations like the American Medical Association, the National Association of City and County Health Officials, the National Council of La Raza, YMCA and others, 803,000 people took the online Diabetes Risk Test on Alert Day and celebrity social media enthusiasts including Alec Baldwin, Alan Thicke, Bret Michaels, Dr. Oz, Patti LaBelle, Duane Brown, rapper Lil Jon, and Larry King helped to capture the national spotlight around diabetes during American Diabetes Month.
With these leadership changes at both JDRF and ADA, it seems there could be a hiccup from a fundraising perspective... as people living with diabetes, we kind of think: "Uh oh." Can you address that?
That's an important question that we wish we could answer more definitively. Although our mission is worthy of contributions in far excess of what we raised this past year, we continue to encounter hesitancy from donors for many reasons. I also think our biggest challenge is that not enough people take this disease seriously enough.
Before we launched our Stop Diabetes campaign, our research showed that we need to change the prevailing mindset by having people understand that diabetes can have deadly consequences. While we have many dedicated and passionate supporters that are doing everything they can to move our mission forward, until we can convince more people of the effect of diabetes on individuals, their caregivers and our healthcare system, reaching new financial heights will be a challenge.
Beyond the ongoing fundraising challenge, what issues do you see as needing to be addressed?
We've had discussions internally about the depth and breadth of our mission and our challenge in trying to effectively serve all people with diabetes. We often hear people refer to the ADA as being "an inch deep and a mile wide." So identifying ways to improve efficiencies in operations that will lead to stronger results is an important topic for us right now.
What will you do next? Will you stay in the diabetes world, or even in the non-profit sphere?
As I said in my departure announcement, my plan right now is to return to New York City to be with family. Stay tuned.
What parting statement would you offer to the interim CEO and next ADA leader?
To Stop Diabetes is an enormous task, but by taking a closer look at how we can work more efficiently and doing so with continued passion and dedication will allow the American Diabetes Association to reach its vision of a life free of diabetes and all its burdens.
* * *
What Lies Ahead?
Our friend D-blogger Dayle Kern, who formerly worked for ADA, has her own suspicions about the issues behind these two departures. She cites increasing pressure from donors with a whole new set of expectations than in years past:
Terms like “engagement,” “transparency,” and “social” have crept into the philanthropy vernacular – and for good reason. These days, we want to do more than simply give money. We want to be more involved and offer not only our finances, but also our smarts and our skills. We also want to know more about where our gifts are going so we can believe in our contributions.
This is certainly a major challenge unto itself.
No matter how you slice it, there's a lot we don't know about the future of these two organizations, simply because things always do change when new leaders step in. Much remains TBD about how we'll collectively move forward in these crazy times marked with so many unresolved issues on health care reform, insurance coverage, access to supplies and devices, regulatory review, and the handling of fundraising and donations.
We can't say THANK YOU enough to both Jeffrey and Larry for all they've done in their respective roles! Now we as a community are tasked with keeping keeping our eyes trained on the new leadership.