JDCA Report: Diabetes Research Spending Ignores Donors’ Desire for Practical Cure

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New study from the Juvenile Diabetes Cure Alliance shows disconnect between funding priorities of major charities and type of cure research preferred by most diabetes donors.

A report released today by the Juvenile Diabetes Cure Alliance shows that only 2 cents of every donor dollar contributed to the four major diabetes nonprofits goes toward research that could deliver a near-term cure for people currently living with type 1.

In analyzing $380 million in donor contributions, the JDCA found that only $9 million went toward practical cure research in 2012. According to the report, the vast majority of funds were used for research that is unlikely to deliver a cure in the next 100 years; other research not aimed at finding a cure; and non-research activities.

The report concludes that the spending priorities of the American Diabetes Association, JDRF, Joslin Diabetes Center and Diabetes Research Institute Foundation are inconsistent with the wishes of donors. A JDCA survey found that nine out of 10 diabetes donors prefer that research funds support a near-term practical cure rather than a long-term idealized cure.

“The majority of donors are on autopilot and tend to give to the same charities out of habit,” said Phil Shaw, general manager of the JDCA. “By taking a closer look at how their funds are being spent and stipulating that their contributions go toward a practical cure, donors ensure that their funds advance and accelerate the projects with the best chances of delivering a solution by our goal date of 2025.”

The independent JDCA, which acts as a watchdog on diabetes cure progress, analyzed the major charities’ finances and more than 550 research projects to determine that only 2 percent of donor contributions are directed toward a practical cure. The JDCA distinguishes between a practical cure that would allow people with type 1 diabetes to live a normal lifestyle in the foreseeable future and an idealized cure that would completely eliminate the disease for future generations.

Other key findings from the report:

  • Funding for practical cure research ($9 million) was dwarfed by idealized cure funding ($59 million) and spending on non-cure type 1 research projects ($121 million) focused on prevention, glucose control and complications.
  • The four organizations spent $359 million on non-research activities in 2012, including overhead, fundraising, education, awareness and clinical care. Only $143 million was spent on all categories of type 1 research combined.
  • The JDRF and DRIF were the largest funders of a practical cure research at $6 million and $3 million, respectively. Joslin and the American Diabetes Association did not direct any funds toward a practical cure.
  • JDRF spent 25 percent of its $205 million budget on idealized cure research, compared to 3 percent on practical cure research. A boost in funding by the JDRF for a practical cure would greatly accelerate speed to a cure.
  • Type 1 donors contributing to the ADA may be wasting funds. The ADA does not support practical cure research and, in general, is focused on type 2 diabetes research. Most of the organization’s $200 million budget (83 percent) went toward non-research activities.

The Juvenile Diabetes Cure Alliance educates donors about how to ensure that their contributions are being used to fund the most promising type 1 diabetes cure research projects. Services and tools available to donors include instructions on how to legally stipulate that their gift goes toward a practical cure, individual phone consultations and regular reports analyzing the state of the diabetes charity landscape.

“Nonprofits have come under fire in the past for issues ranging from executive compensation to administrative expenses, but we encourage the public to look deeper still,” said Peter Miselis, director of research analysis for the JDCA. “Investigating the financials of a charity as an individual can be a daunting, if not impossible, task. The JDCA serves as an impartial intermediary so that donors can have the facts when making a decision that is equal parts logical and emotional.”

The full report, “How Much Practical Cure Research Do the Major Type 1 Non‐Profits Fund?,” can be downloaded on the JDCA website. Other JDCA reports on topics ranging from the most promising practical cures to tips for donors can be found on the JDCA’s reports page.

About the JDCA

The JDCA is an independent analyst of the type 1 diabetes charitable universe and brings a business-like perspective to help donors focus research toward a practical cure. The mission of the JDCA is to achieve a type 1 practical cure before 2025 by steering donor contributions to the most effective charities.

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Sarah Dietze
Walker Sands Communications
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