What Must Change to Achieve a Practical Cure in 15 Years
October 18, 2018
This report outlines the paradigm shift necessary for the T1D research and fundraising community to achieve a Practical Cure for type 1 diabetes within the next 15 years. Regrettably, we start this report with the sobering fact that there is still a long way to go and the past twelve months have yielded only modest progress.
Although a Practical Cure cannot be guaranteed in the next 15 years, without the implementation of the three following recommendations there is little to no chance of achieving a PC in time to affect those currently living with T1D.
Adopt and Institutionalize: A standardized Practical Cure (sometimes referred to as a "functional cure") objective must be adopted as a core mission and research focus at the major T1D nonprofits, the NIH, and at T1D research institutions.
Incentivize: Once adopted, leaders of the nonprofits, NIH, and research community must be offered material incentives, such as bonuses, to commit the full resources necessary to achieving the goal of a PC in 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, the objective must be clearly defined and established. The sidebar on the right, which shows the clinical requirements a Practical Cure solution must achieve and adhere to, serves as a strong starting point. Although a Practical Cure does not constitute a full reversal of the disease, it would deliver a dramatically improved and 'near-normal' quality of life. 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 successful or not, as quickly as possible.
Once a definition has been accepted, a broad range of actions needs to be implemented 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, CDC, and the research community to identify Practical Cure research as a core focus area. Although other areas of research also merit pursuit and resources, PC research should be identified as a core initiative and given its own unique research portfolio, like the Artificial Pancreas or Encapsulation. There must also 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. Unless the main T1D research funding organizations align and actively develop Practical Cure research as a core focus area, it is unlikely to be delivered.
Once a Practical Cure initiative is adopted as a core research objective, incentives must be used to encourage nonprofit leaders and research investigators to pursue it vigorously. Nonprofit CEOs, principal investigators, and the staff within these organizations should see their workflow, performance expectations, and incentives aligned with finding a Practical Cure. Key types of incentives include funding for research projects and recognition for scientists who make Practical Cure breakthroughs.
To fully achieve this, there must be a fundamental change in the relationship between the T1D nonprofits and the research community. 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 pursue PC-focused projects.
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 executive compensation report. (Click here to read).
A Special Role for the ADA and JDRF
The JDCA has actively reported on the decline of research spending at the ADA and JDRF. In 2017, JDRF research grant funding was only 38 percent of its annual revenue, down more than 50 percent over the past ten years. Of that, only seven percent was used to specifically fund cure research. Meanwhile, the ADA spends only four percent of its annual revenue specifically 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 one of the main parts 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 organizations are 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 this outcome will be achieved in the next 15 years. We encourage donors to do their part by speaking up:
First, donors should 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.
Second, we encourage you to write or email JDRF's CEO, Derek Rapp and express your interest in a PC research initiative.
Third, 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.