$Millions Going to Big Diabetes Non-Profits, But With Little Accountability
When it comes to research, you would expect that the wants of those living with type 1 diabetes would be totally in line with the goals of scientists seeking a cure for the disease.
But according to the Juvenile Diabetes Cure Alliance, a watchdog organization with a vested interest in type 1 progress, the two sides are surprisingly far apart. According to the group, most funding for research projects goes toward long-term goals with a timeline that won’t impact the lives of today’s type 1s, despite the desire for those with type 1 to live a more normal life.
“A practical cure would mean that my kids could just be kids,” said one mom of her daughters Bella and Elie, “and not have to worry about diabetes.”
The JDCA wants to see that equation changed, and has set 2025 as a target date for a practical cure, defined as any advancement that would allow those with type 1 to live free from insulin intake and glucose monitoring.
Founded in 2011 by Brian Kelly, whose son, Tommy, was diagnosed at the age 2, the young but motivated group is a response to Kelly’s disappointment that many major charities raise hundreds of millions of dollars each year by promising a cure, yet offer little, he says, by way of measurable goals.
So abysmal is the goal-setting and transparency regarding where that funding goes that the JDCA recently dispensed failing grades to the top four diabetes-related non-profit organizations, including the Juvenile Diabetes Research Foundation, the American Diabetes Association, the Diabetes Research Institute Foundation, and the Joslin Diabetes Foundation.
The JDCA reports what it calls “systematic deficiencies” in how the groups operate, especially when it comes to research projects. The JDCA says all four offer little accountability when it comes to not only where donor funds are spent, but also whether those funds are going toward projects that are actually geared toward finding a cure for diabetes.
“These glaring areas of weakness make it difficult for donors to know where to give,” said Pete Miselis, director of research for the JDCA. “Donors are being left in the dark with no way to find out whether their contributions are advancing a cure. We believe a more informed donor base will result in more contributions, which will bring us closer to finding a cure.”
How Its Focus Shifted
Originally, the JDCA focused on reporting new, short-term advancements in type 1 research through regular published reports as a way to not only keep those interested abreast on cure progress, but also to bring a greater sense of hope to those living with the disease.
That somewhat abstract idea, though, was soon was propelled into something much bigger as the organization’s key members realized they were standing virtually alone in their mission to find a practical cure for those living with type 1.
Even though a vast majority of people with type 1 say a practical cure today would be their preference, not only were top non-profits failing to fund many projects-long-term research and type 2 receives a majority of funds- but those that did fall into that category were often not funded sufficiently to make any real progress.
Without full funding, many promising projects ended up fizzling out, much to the disappointment of JDCA officials.
“From the beginning it was clear,” the JDCA’s general manager, Phil Shaw said. “Is there enough energy on the focus for this generation? Are projects going to be fully funded and resourced? The answer was always no. We see a lot of news and breakthroughs, but for most of them that promise a cure, the timing is questioned. Tell us how it gets from here to bedside.”
The JDCA then became focused more attention on how the diabetes non-profits determined which research projects received funding and which ones did not.
Although information was limited, they ultimately found that larger research centers were getting the majority of available funding, no matter what direction their research was headed, while smaller centers, often the ones focused more on practical cure initiatives, were falling off the radar.
“They may not be operating as efficiently as they could be,” said Shaw of the top four non-profits. “Within the landscape as it exists today, it’s clear that there’s a deficit of progress.”
It’s likely difficult for type 1s not to feel dejected at the lack of progress along with the politics of funding, so the JDCA began expanding its role to help funnel funds toward projects that offer real optimism for a practical cure.
To do so, the JDCA began actively seeking out projects that were geared toward a practical cure.
“We’re looking for something that can allow for a normal lifestyle that has a chance to be in people’s hands by 2025,” said Shaw.
Attracting a Following
According to Shaw, 90 percent of the people they’ve surveyed are looking for a practical cure in this generation. And because the JDCA makes that its main mission, the organization has begun attracting attention- it now has 6,000 donors on its rolls.
While the organization doesn’t directly provide funding, it does serve as a link between donors and projects, encouraging funding to go toward a practical cure.
“We work with them to secure a direct practical cure initiative, which kind of makes perfect sense,” said Shaw. “Through our advocacy, we’ve begun to attract people.”
For JDCA, a handful of projects have gained some attention, but only after rigorous study to ensure that the 2025 marker that’s been set applies, along with the funding and resources available to continue the project from start to finish.
Most organizations have a target date that’s much further out or unmentioned, meaning that those who are currently living with diabetes won’t see a cure.
While many larger researcher centers are working on long-term goals, there are smaller centers with projects that would fall into the spectrum of practical cure initiatives.
The problem then becomes funding, since smaller facilities are not as high on the food chain as larger, more established ones, making them less attractive to donors.
Under the spotlight of the JDCA, however, those smaller researchers have a chance at better funding that could lead to success.
Looking for a Change
Part of the hope is that the larger non-profits will also be encouraged to shift some of the focus away from long-term projects toward shorter ones.
“We’re not asking for the entire portfolio to be changed,” said Shaw, adding that the organization is only looking to have more funding funneled toward practical cure outcomes, rather than long-term cures or type 2 research in order to provide hope for this generation of type 1s.
Too, the JDCA is also hoping to bring a sense of community to the researchers focusing on diabetes to help promote working together to find that elusive cure.
As with a host of other diseases and the research that accompanies them-the 1980s AIDS crisis is one example-researchers tend to be a protective over even the smallest of finds, so that sharing data and breakthroughs isn’t as forthcoming as it chould be.
Ultimately, it puts the entire cost of that withholding on the shoulders of patients, who don’t experience the benefits that could come from collaborative research.
“We kind of believe that competition speeds results, a balance between that competition and collaboration,” Shaw said. “We don’t see that happening.”
To make changes, the JDCA is hoping its donors do the talking-“The most powerful way to do it is with dollars,” Shaw said.
Ultimately, the JDCA is hoping to bring other organizations on board so all are working in a more harmonious manner toward one singular mission, one he’s fairly optimistic about, despite any discord among the groups.
“The goal at the end of the day is a cure for diabetes,” said Shaw.
(Editor’s Note: The JDCA’s recently issued press release detailing its concerns with the large non-profit diabetes research organizations is accessible at Reuters or BusinessWire.)