Many Problems With Diabetes Cure Research, Says JDCA
JDCA’s Phil Shaw talks to IN about the problems with diabetes cure research.
Note: This interview was conducted in two rounds over email.
The Juvenile Diabetes Cure Alliance (JDCA) is a nonprofit organization that advocates for a “practical cure” for Type 1 diabetes to become widely available in the next 15 years. A practical cure is defined on the organization’s website as “a lifestyle that frees people from a majority of the burdens of the disease.” So, the artificial pancreas system could be considered a practical cure. JDCA maintains that such a shift in focus (from a real to a practical cure) is necessary for meaningful progress to be made soon enough to benefit individuals already living with Type 1 diabetes. Toward this end, JDCA evaluates the integrity and productivity of major diabetes organizations and research centers, including the American Diabetes Association (ADA) and Juvenile Diabetes Research Foundation (JDRF). It is the founders’ belief that “people’s innate gratitude that there is a charity fighting for a cure has forestalled a healthy demand for accountability.”
Q1. First of all, aren’t there limitations of prioritizing a “practical cure,” rather than a full-fledged cure? For instance, wouldn’t a “practical cure” like the artificial pancreas system benefit fewer people across the globe, given all that is needed to support such a system?
We fully agree that the ultimate goal is a full-fledged cure for T1D. That would be terrific. However, that ‘perfect’ or ‘ideal’ solution has proven elusive. We are only marginally closer than we were a decade ago, and progress moves forward slowly at best.
On the other hand, a Practical Cure, sometimes referred to as a functional cure, is built from research platforms that exist today. A Practical Cure would provide a near-normal quality of life for people living with T1D and would eliminate many of the major effects–diet, constant monitoring, lows, highs, etc. The great benefit of focusing on this type of outcome is that, with focus, it is achievable in the next 15 years—in time to impact quality of life.
But whose quality of life? Who exactly is likely to benefit from a Practical Cure?
Everyone living with the disease today. When we ask people with fully established T1D about the Practical Cure, nearly all feel such an outcome would dramatically improve their quality of life and nearly all state that they would donate to this type of focused research if that option was made easily available to them.
Q2. Your organization claims to have noted some disturbing trends among the major diabetes organizations, such as inconsistent methods, poor tracking of progress, lack of genuine incentive, and lack of transparency. So, in some cases, the problem is poor business practices, but in others, it is ill motivations. Can you elaborate on the latter?
There are three concerning trends: 1) mission shift away from cure research; 2) a growing gap between donor priorities and resource utilization; and 3) the lack of direct, material financial incentive for executives to deliver a cure.
1) Mission shift away from cure research
Over the past decade, there has been a material shift (or drift) in the amount of money spent by JDRF and ADA on research for T1D. Both organizations raise about $200 million per year each but use only a portion of that to fund T1D research.
One decade ago, 67 cents out of every dollar raised by JDRF was used for research grants. Today, only 38 cents of each dollar raised is used for research grants– a significant decline that remains unexplained. The ADA, meanwhile, spends less than 10 cents out of every dollar on T1D research.
2) Growing gap between donor priorities and resource usage
At the same time, according to annual community surveys, 98% of T1D donors state that the number one reason they give is to fund cure research. We are concerned that there is a gap between donor wishes and actual spending, and that there are very few mechanisms to ensure donor intent is fulfilled. When donors discover that JDRF only uses 38 cents out of every dollar they give to fund cure research, 58% of them state that they are “less likely to donate in the future” – an outcome that we all want to avoid.
Last fall, over 100,000 people signed a petition asking for both organizations to materially increase the amount of money spent on cure research. Neither organization has commented.
3) No direct financial incentive to deliver a T1D breakthrough
Nearly all compensation of executives at the ADA and JDRF are fixed pay, dispersed whether or not these leaders move us closer to a cure or any material breakthrough in T1D research. Only a very small portion of their compensation is based upon specific performance measures. This practice of full, guaranteed pay without demonstration of performance stands in stark contrast to most of the for-profit world, where the majority of executive annual compensation is heavily tied to performance. The executives of the two main diabetes non-profit organizations each earn close to $1 million per year, most of which is given whether or not they lead the organizations to a material breakthrough in T1D.
Q3. Should we not donate to these organizations?
Both JDRF and ADA are admirable organizations, which are excellent at fundraising and do many things well.
We encourage everyone who donates or raises money for T1D to specify in writing that the money be used for cure research for T1D. This is as simple adding a short written note when making a contribution.
All charitable organizations that receive a gift for a specific purpose are obligated to use it for that purpose, or they must return the funds. You can get a stipulation card on our website.
But these organizations do not distinguish between a practical and real cure, as you do. So, wouldn’t the money just go toward the so-called elusive goal?
You are correct that specifying that donations should be used for cure research does not ensure it will be used for Practical Cure research. Ideally we hope that everyone would specify for practical cure research. That said, specifying how donations should be used is a major change in behavior for most people so, at least for now, we are hoping to get people in the habit of simply taking this extra step.
Q4. What exactly is the relationship between the major diabetes organizations and the pharmaceutical industry?
We do not have an informed point of view on this question.
However, public records show that Medtronic is one of the largest recipients of JDRF grants over the past five years, driving development of a closed loop artificial pancreas. Such gifts are controversial because companies receive ‘free’ development money to make something that might later generate a profit for them. Yet our view is focused on outcomes: if the money helped bring a material benefit to those living with T1D, then that is a good thing.
Q5. In your opinion, what other stakeholders inhibit research for a cure?
The other major funding source for T1D research is the NIH, which is funded by our tax dollars. More focus on practical/functional cure projects from the NIH could yield a powerful impact for the Type 1 diabetes community.
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