This report outlines the paradigm shift necessary for the T1D research and fundraising community to achieve a Practical Cure for type 1 diabetes in the next 15 years.
Although a Practical Cure is not assured in the next 15 years, without the implementation of the following recommendations there is little to no chance of achieving a PC in time to affect those currently living with T1D. The three theoretical recommendations below focus on the overarching structural realignment necessary across the T1D field, as well as the practical implementation steps needed, to make PC research a reality.
- Adopt and Institutionalize: A standardized Practical Cure definition must be adopted as a core mission and research focus at the major T1D nonprofits, the NIH, and at T1D research institutions across the US.
- Incentivize: Once adopted, the nonprofits, NIH, and research community must be incentivized to commit the full resources necessary to achieving the goal of a PCin 15 years.
- Donor Action: The donor community must continue to be an active voice for increasing cure research funding and allocating money within that to a PC initiative.
Before funds and resources can be allocated towards a Practical Cure, a standardized PC medical definition, as shown in the sidebar on the right, must be accepted and adopted across the T1D community. Although it does not constitute a full reversal of the disease, a PC delivers a dramatically improved and 'near-normal' quality of life. The JDCA believes there is a moral imperative to try to find a solution which minimizes the disruptive aspects of T1D and allows people to live a normal life free of worry. Consequently, research and funding goals should work towards a target of eliminating the everyday maintenance T1D requires.
The importance of a 15-year time-goal cannot be overstated. Evaluating the pool of potential research projects against a 15-year delivery goal reduces the priority level of exploratory and ancillary research while increasing the priority, resourcing, and funding for those projects which have the potential to deliver the desired result within the next 15 years. The JDCA believes that everyone involved in T1D research has a moral imperative to ensure that late-stage Practical Cure research projects are brought to conclusion, either positive or negative, as quickly as possible.
Once a definition has been accepted, a broad range of actions needs to be implemented by the T1D nonprofits, researchers, and donor communities to meaningfully increase the probability of developing a Practical Cure within 15 years. First and foremost, it is important for the major T1D nonprofits, the NIH, and the research community to identify Practical Cure research as a core focus area, like the Artificial Pancreas or encapsulation. Until it is being actively pursued, a practical cure is unlikely to be delivered.
There must be an immediate shift of focus to identifying and fully funding existing research projects with the potential to deliver a Practical Cure so they can move through the FDA approval pipeline as fast as possible. Although other areas of research also merit pursuit and resources, PC research should be identified as a main initiative and given it's own unique portfolio of research. PC research should be adopted as a core initiative by the leaders of the major T1D nonprofits and research centers. Nonprofit CEOs, principle investigators, and the staff within these organizations should see their work flow, performance expectations, and incentives aligned with finding a Practical Cure.
Once a Practical Cure initiative is adopted as a core research area, incentives must be used to encourage nonprofits and research investigators to pursue it vigorously. Key types of incentives include funding for research projects and recognition for scientists who make Practical Cure breakthroughs.
To fully achieve this, a fundamental change in the relationship between the T1D nonprofits and the research community needs to occur. The major T1D nonprofits need to become more proactive in soliciting the kind of projects they want to fund and send a message to researchers that they seek, and are willing to fund, Practical Cure projects. This, in turn, will incentivize and encourage the research community to design and propose these types of projects. The research community also needs to be able to take risks on potential Practical Cure research projects and not be penalized if it doesn’t yield promising results. Currently, researcher compensation is tied to positive outcomes which creates a model in which only low-risk low-reward research is pursued.
In addition, it is important to incentivize T1D fundraising nonprofit executives to deliver a PC by tying compensation to the delivery of a PC. The JDCA has written extensively on how to tie T1D nonprofit executives to PC performance in our annual Board of Directors report. (Click here to read).
A Special Role for the JDRF and ADA
The JDCA has actively reported on the decline of research spending at the ADA and JDRF. In 2016, JDRF research grant funding was only 38% of its annual revenue, down more than 50% over the past eight years. Of that, only 7% was used to specifically fund cure research. Meanwhile, the ADA spends only 3% of its annual revenue on T1D research, a remarkably small amount. This decline must be stopped if there is to be a real chance for a Practical Cure in the next 15 years.
To date, neither organization has adopted a Practical Cure initiative as a main part of its research portfolio. However, if adopted, we have no doubt they have the capability, experience, and resources to make progress quickly. In our assessment, no other entity is as well positioned to make great strides towards a Practical Cure as the ADA and JDRF.
Financial donors also play a key role in ensuring that a Practical Cure research platform is a top priority. As the primary source of income for the main diabetes charities, donors have the right to voice their point of view. Without ongoing pressure from donors to adopt, institutionalize, fund, and fully resource Practical Cure research, it is unlikely that this outcome will be achieved in the next 15 years.
We encourage donors to do their part for a Practical Cure by speaking up. There are several things donors can do:
- First, if you haven't already, we encourage you to sign and share the JDCA More for a Cure Petition, which asks for a significant increase in the amount spent on research. The petition is on pace to cross 100,000 signatures in the upcoming weeks.
- Second, when you make a donation, we recommend that you include a written request that the money is used for cure research. The receiver is obligated to use the donation as you wish.
- Third, we encourage donors to voice their interest in a PC initiative at local fundraising events by letting their local chapter heads know about their interest in PC research by contacting the ADA and JDRF headquarters to make their voice heard.