I don’t think it’s a controversial thing to say that anyone with type 1 diabetes, or anyone who loves someone with type 1 diabetes, is eager for a cure. But it turns out that it is controversial to say that the two biggest charities in the diabetes sphere, the American Diabetes Association and JDRF, aren’t spending enough of their funds on cure-related research. The online T1D community has been roiling over the past few weeks, since the Juvenile Diabetes Cure Alliance (JDCA) released an infographic that of the $447 million raised by the two charities in 2014, only 7% went to cure research, even though 56% of donors in the T1D community report that research toward a cure is their top priority. The JDCA, a watchdog organization founded in 2011 by businessman Brian G. Kelly after his son was diagnosed with T1D at age two, seeks to push the major diabetes organizations to direct a higher percentage of their resources toward finding a cure, by publicizing detailed analyses of exactly how the two organizations spend their money (to get the information, the JDCA looks over the Form 990s that non-profits must give to the IRS spelling out their annual budgets; it also examines publicly available data on research projects). They followed their infographic with a petition stating in part:
“Despite record fundraising for diabetes, the amount of money spent on T1D cure research has steadily declined over the past five years. Today, the two most powerful diabetes non-profit organizations spend only a small portion of their annual budgets on cure research. The goal of this petition is to increase funding for cure research from 7% to 30% of all money raised by these two non-profits. By signing this petition you join us in asking the JDRF and ADA to restore the focus and funding for cure research…”
While the petition hasn’t yet generated the number of signatures the JDCA is hoping for (11,488 out of 75,000), it’s spurred a blizzard of response on social media, some people thanking the JDCA for their research, others angry at what they see as an unwarranted attack on an organization that is doing great and important work for the community it serves. (Most observers have taken the petition as mostly geared toward JDRF, which used to be exclusively cure focused but now has a mission that includes preventing and treating type 1 diabetes as well. The ADA, by contrast, is mostly focused on type 2 diabetes, so has not been involved in the fray.) Observers also pointed out that by lumping JDRF with the ADA in the petition, the Juvenile Diabetes Cure Alliance made it seem like JDRF spends a smaller percentage on cure-based research than it actually does. According to the watchdog group’s analysis, in 2014 12% of JDRF’s total funds went towards cure-based research, and 4.2% of the ADA’s.
Philip J. Shaw of the JDCA argues that their analysis of JDRF funding shows that not only has the amount of money being spent on cure research declined, but that the chunk of money spent on research is a shrinking part of the JDRF’s overall budget. Last year, according to this analysis, 56% of JDRF’s budget went to salaries, overhead, fundraising, and public education, while 44% went to research (and 12% of the overall budget went specifically to cure research). This 44% figure is the lowest chunk ever—dropping from a high of 64% in 2008. This “double whammy of a slow decline in the absolute amount of money spent towards a cure and the percent of resources being dedicated made us feel like it’s important for the community to see the data, discuss it, and discuss whether that slow decay is appropriate.”
Shaw admitted that if they had it to do over again, they might not have lumped JDRF and the ADA together—two organizations with different missions and different constituencies which have given different amounts toward a cure. “But in our view there are no other two organizations in the world that have the potential to move the dial on breakthrough research should they choose to put their muscle behind it.”
And if they don’t choose to put their muscle behind it? Part of the JDCA’s mission is to serve as consultants for donors who only want their money to be used toward cure research. I think this is part of the reason why some people have responded so angrily to the JDCA’S challenge—because of the idea that it might encourage people to donate their diabetes dollars to organizations other than JDRF or the ADA. At least two other umbrella organizations are vying for donations from the type 1 diabetes community. The first is Iamtype3.org, which gives directly to scientists focused on cure-based research, all of whom have the extra spur of having diabetes themselves or a close family member with the disease. According to their mission statement, “Proceeds will be dedicated to facilitate collaboration among all recipients; accelerate the pace of research leading to a permanent cure for diabetes; fund plausible initiatives by the best scientific minds deemed too risky by conventional sources.” The other organization is the Diabetes Research Connection, which gives seed money directly to early-career scientists to do peer-reviewed diabetes research (not all of it cure-related). In the case of the Diabetes Research Connection, donors can pick exactly which research they want to support. (Another organization, the Diabetes Research Institute Foundation raises money to fund cure-focused work at the Diabetes Research Institute in Miami.) A conversation I had with a scientist about changes in the way JDRF funds projects made me think that there’s a place for organizations like these that focus on supporting scientist-directed research. The scientist told me: “JDRF used to be just wonderful for [supporting] investigator origin [work]. If you had a good idea you could apply and get some funding. Now they’re asking for a particular topic, which then everybody tries to focus on. They are still funding those sorts of things, but it’s not the same as letting people come up with their own idea from their research. It’s trying to manipulate the field. It’s the old, how do you herd cats, well you put food out. Some of that is good, but the pendulum has gone too far.”
On social media, the JDCA has been accused of undermining JDRF and its work, and JDRF’s president and CEO Derek Rapp wrote a blog post calling for the whole of the diabetes community to work together. While the statement didn’t mention the JDCA, its release soon after the petition doesn’t seem coincidental. In the post, Rapp pointedly hinted at what has been one of the most controversial aspects of the infographic: that the JDCA’s definition of cure research may not match JDRF’s, and that this definition affects the statistic of how much JDRF is spending toward a cure. “I am writing this blog, because I know there are some people who question whether organizations such as JDRF are funding the work these people view as most impactful toward our vision [a world without type 1 diabetes]. The question is a fair one, though I admit some who ask it present information in ways I find perplexing and misleading. I want to help you understand that JDRF is working incredibly hard to achieve our vision. At the same time, however, we recognize we have opportunities to make a tremendous difference in people’s lives long before that vision is realized. Hence, we feel we have an obligation, as well as an opportunity, to accelerate the discovery, development, and adoption of a variety of therapies.” [For a run down of projects that the JDCA put in the cure-research bucket and who funds them, see this blog post on theperfectd.] (Again, the ADA has not really figured into the debate, and has not responded to the infographic or the petition.)
Rapp went on to talk about the range of advances that JDRF has supported (many of them part of its strategic approach—or pendulum swing that the scientist talked with me about—to pick certain promising areas of diabetes research and focus the organization’s efforts and funding there as a way to speed up and spur progress):
“JDRF is the leader in funding research and has played a pivotal role in making today the most significant time in T1D research progress in decades: first and second generation pumps that prevent hypoglycemia became available to patients, human trials of more advanced artificial pancreas systems continued to show promise and move closer to the market, the first ever human trials of encapsulated beta cell replacement products were launched, dramatic breakthroughs in stem cell research occurred, human trials of glucose-responsive insulin were announced, and human testing of several compounds for beta cell protection was initiated. JDRF’s broad support directly impacted each of these advances, all focused on fulfilling our vision of a world without T1D. Importantly, each of these projects has shown important advances within the last year. Our commitment to our vision of a world without type 1 diabetes is steadfast.”
Emotions are raw in the domain of type 1 diabetes: the disease wears you down, and people are desperate for a cure, but they don’t necessarily agree about the best method to achieve it, and there is not yet a clear path. I support the work that JDRF is doing, and our family benefits from it, both the money they put into research, and into education and helping families connect. Yet still I am glad that their work is being put under the microscope, as is the work of many other non-profits, who are increasingly being held accountable to what their donors want. Between the two of them, JDRF and the ADA take in almost half a billion dollars of donations. I don’t have a problem with a watchdog group examining closely how these organizations are spending their money, and whether that spending matches up with donor priorities. I also applaud any work that pushes more money towards a cure and increases the urgency of the search. In his work for the JDCA, Shaw meets with a range of scientists who are trying to solve the T1D conundrum. “The JDCA looks at what was done with AIDS research as an example of the power of focusing research dollars on the most promising pathways, and truly living the urgency to get something to market as quickly as possible. There are times when I talk to scientists and I don’t feel that urgency to get something to market tomorrow.” Could the two biggest diabetes non-profits in the world increase the sense of urgency to cure this disease? Could the JDCA help them to do so? What if this work of the JDCA helps enable more scientists to pursue a cure? From where I sit, it’s hard to see the controversy in that.