The JDRF Capitol Chapter’s 3rd annual Research Summit in Washington, D.C., on March 9 brought out leaders from the Diabetes Community to talk about everything from the latest in research and technological advances to psychosocial issues for kids and adults with diabetes.
More than 600 people attended this year. Among them was one of our good friends, longtime type 1 and fellow D-blogger Scott Strumello, on the scene along with several other familiar faces from the DOC.
We’ve heard about a handful of these JDRF Summit events happening across the U.S. in recent years, with more chapters keen on hosting them locally — which is great, since traveling to far-away venues can be costly and not possible for everyone. But we all want to know about the latest and greatest in JDRF’s world, so these events are excellent windows on progress, not to mention great in-person meet-up opps!
Scott was kind enough to share some of the highlights he observed at this year’s national-level summit in D.C. with all of us here at the ‘Mine:
A Guest Post by Scott Strumello
First off, you can view the JDRF Research Summit agenda, and access some of the key presentations for download at the event website here.
The day was moderated by former Miss America Nicole Johnson who’s a type 1 herself, of course. This research summit started out with a few minutes on JDRF’s clarified mission statement that essentially they’re now calling a “triumvirate cure strategy” — consisting of the introduction of immune tolerance, beta cell regeneration/replacement, and the Artificial Pancreas Project… (and perhaps glucose-responsive insulin). The idea being that patients need to be kept healthy long enough to enjoy a cure when its perfected, which will likely take more than 5-10 years! This isn’t exactly new, but the fact that chapters around the country are now discussing it suggests this has become the de facto mission.
Those of you who know me know that I’m ever-skeptical with my observations, so take my notes here as evidence of that stance.
Artificial Pancreas & FDA Relations
The JDRF summits usually begin with an expert panel discussion, and this was no exception. A team of panelists (including a fair number from the University of Virginia) talked about the Technology and Clinical Trials involving closed-loop insulin delivery systems. That discussion commanded most of the morning. Ironically, considering many of the FDA’s and NIH’s campuses are just a metro stop or two away from the hotel where this event took place, there wasn’t any regulatory representation on the panel. Members on the panel did note that in the past four years, there’s been considerable progress on the regulatory front.
I’ve been one of several Diabetes Advocates who’ve been complaining for years that the FDA’s been dragging its feet on formal guidance for industry on what regulators will be looking for in such a system. But in late 2012 after years of lobbying, the JDRF was able to use its team of advocates to push for formal guidance. That guidance document is still for an “investigational device,” meaning the agency doesn’t quite consider an AP ready for commercialization, but the JDRF points out the guidance has virtually everything the organization was hoping to see in the final version. So that’s good! The panel discussion also noted the new guidance would lead to more AP research being able to proceed to clinical trials, which has been a major difficulty in the past.
However, I really had to bite my tongue when listening to Bill Parsons, who has a type 1 child himself and serves as Chief of Staff for House Rep. Chris Van Hollen (D-MD). He described the AP as “a glimmer in an investigator’s eye seven years ago,” implying that we’re so much closer today. No offense, but I’ve been hearing that an artificial pancreas was right around the corner since the early 1980s — which is over 30 years now! I’m just tired of the carrot-in-front-of-our-nose approach. It’ll be here when it gets here.
I’ve been a bit critical of the AP project because the JDRF has never disclosed how much money it’s actually invested in this initiative and one can’t discern that from the organization’s 990 filings. While CEO Jeffrey Brewer has made a number of positive changes (including acknowledgement that adults with type 1 are now one of the organization’s core constituencies) since taking the helm in June 2010, adding more transparency into the organization’s financial statements has (so far) NOT been one of his changes.
While the JDRF chapter also suggested that more money might help speed things along, I remain skeptical that’s truly a major issue in advancing this AP technology. After all, donors and fundraisers already raised millions of dollars last year for the organization in a weak economy, and we really have no idea how much money it’s actually spending on the AP project. [Editor's note: JDRF reports that it raised $110 million in 2012, and the total raised since the founding in 1970 is $1.7 billion.]
The AP discussion was interesting, but beyond those insights I didn’t learn much that was truly new.
Talking Beta Cells and Rodents
One of the Duke University panelists was medical professor and researcher Chris Newgard, who was very informative. He spoke of new pathways to expand functional beta cell mass. I consider myself pretty familiar with research in this field, but I think he made a compelling case in discussing how this might be one area where type 1 diabetes can learn something from research into type 2 diabetes. He also offered some perspective on how technology, like that used in drug development for treating type 2 diabetes, might be applicable for the purpose of expanding beta cell mass in type 1 diabetes.
While some of the technical specifics went a bit over my head, the core message was that functional beta cell mass can expand with weight gain. As a result, there’s already a body of knowledge into how beta cells proliferate in the case of obesity, thereby helping many obese individuals who don’t have type 2 diabetes remain normoglycemic. That same base of knowledge may be appropriate in helping beta cells expand and proliferate, and certain drugs developed to treat type 2 diabetes might be used off-label in helping to create an environment in which islets (transplanted or regenerated) can thrive and proliferate.
Oh, yes, and there was mouse talk — or, rats to be specific. The Zucker Diabetic Fatty (ZDF) rat is considered a rodent model of insulin resistance for type 2 diabetes, compared to the Nonobese Diabetic (NOD) mouse that’s considered the rodent model for autoimmune type 1 diabetes. But beta cell proliferation has been studied in both cases, and certain treatments for type 2 have helped in the cures for the NOD mice. So the rodents are still showing us what’s what in the diabetes world…
The Other Diabetes Exchange
Those of us who’ve been living with type 1 for awhile remember the diabetes exchange diets, pre-cursors to the carb-counting many of us have nowadays. Food aside, there’s another D-Exchange to talk about these days.
That would be T1D Exchange, and I found their presentation at the JDRF event extremely informative. The U.S. lacks much formal surveillance of type 1 diabetes, often relying on Europe where surveillance registries of type 1 diabetes are more common. However, as many of you know, JDRF is working closely with the The Leona M. and Harry B. Helmsley Charitable Trust on developing a new national registry for type 1 diabetes called T1D Exchange. We’re seeing the first data starting to emerge from that effort. The speakers love to point out how few patients are within target ranges for very much time, but there’s absolutely nothing newsworthy there. It’s very old news. (Researchers need to ask WHY?)
I thought about how doctors and diabetes educators like to instruct how manageable diabetes is — yet as author Dan Hurley said in an interview with NPR a few years ago:
“I think we need to accept that we are human beings and we were not put here to control our blood sugar and that we do the best we can. If dieticians and doctors could begin to accept a little better that we’re not screw-ups because our sugar is running a little high… we’re human beings, and we’ve got more important things to do with our life than stare at our blood sugar numbers all day.”
(btw, Hurley also also presented at the Capitol Chapter Research Summit in 2011, as the ‘Mine reported here)
In the T1D Exchange presentation, they presented some rather extensive analysis adjusting for things like income and education, and found that among patient groups, Caucasian Americans and Hispanic Americans were statistically more likely to be closer to goal than were African Americans. Remember, this was already adjusted for income and education, so the typical issues addressed in diabetes care in general had already been accounted for. The presenter didn’t yet have any explanations, but not surprisingly, pump wearers tended to do better, as did the CGM users. Using these gadgets is not necessarily the reason they did better, but the PERSON using those things is the main reason, as people who have access to tools like pumps and CGMs generally have economic advantages, etc. Clearly, a person inclined to fight for insurance coverage for a CGM is likely more actively involved in self-care than someone who wouldn’t put up the fight.
The JDRF Capital Chapter has held these events in the Washington, D.C., area several times previously, and I’ve been fortunate enough to have attended each one.Although the information presented isn’t always ground-breaking, I still find them informative and very motivating, and would like to see even more chapters around the country organizing similar get-togethers.
Among the handful of chapters around the U.S. who’ve done so thus far are JDRF New England Chapter in Boston, the JDRF Today & Tomorrow conference in Southeast Michigan, and one organized by the JDRF Lincoln and Omaha-Council Bluffs Chapters in Omaha, NE. My own local JDRF New York City chapter has a research update on April 23, and I’ll be attending that one, too! Kudos to them all for doing great work in donor relations.
JDRF members should ask their local chapters to organize a research update in your area if you’d like to see one, plus organizers who’ve already hosted these events could reach out to share any valuable lessons they’ve learned along the way.
Just like in other areas of advocacy, I think it pays to “Think Globally, Act Locally” whenever possible.
Thanks to Scott for these notes, and especially for encouraging more regional activity so that more and more PWDs can have the personal experience of attending a JDRF Summit!