A government funded research program that has pumped more than $2.5 billion into diabetes research over the past 20 years, fueling breakthroughs, is in danger of dying a quiet death. Called the Special Diabetes Program (SDP), the program began funding Type 1 research at the National Institute of Health in 1998. For years, the program has been renewed, in the early years in five-year intervals, and more recently in two-year blocks. The renewal over multiple years has been vital because it helps researchers plan ahead and conduct long-term studies. SDP has long won over strong bi-partisan support.
Right now, the program is excluded from the continuing resolution put forth on Capitol Hill, meaning it is in danger of disappearing. This, said Cynthia Rice, JDRF’s SVP of Advocacy and Policy, would be a devastating blow to diabetes research.
“Despite broad, bipartisan support for the Special Diabetes Program, Congress has not yet renewed the program, due to completely unrelated challenges that have prevented most legislative packages from moving forward,” said Rice. “Without a renewal, NIH investment in T1D research will be cut by a third, with $150 million less in new research, slowing progress to cure, prevent, and treat T1D.”
Since its creation, the SDP can be directly linked to many diabetes treatment and cure breakthroughs. Better treatment of both diabetic kidney and eye disease are two examples. While 20 years ago, before SDP, those complications were a possibility for most people with diabetes, today they are much easier to treat and avoid. Research is continuing on how to prevent them completely.
Better insulin that works faster and more precisely, including the research to develop “smart insulin” that would activate only when glucose is in the body – possibly changing daily care of diabetes to a single once-a-day shot – was launched by the SDP and continues to move forward.
And the artificial pancreas, the newest development, including the first hybrid closed loop system on the market that is drawing rave reviews (with as many as nine more systems coming down the pike), was created by a foundation of research and clinical trials funded via the Special Diabetes Program.
Trial Net, one of the most powerful, far reaching and important programs in diabetes research today, has been funded by the SDP for years. According to Carla Greenbaum, TrialNet Chair and Director of the Diabetes Research Program at the Benaroya Research Institute at Virginia Mason, “Without SDP funding, progress achieved by decades of research will be halted and the untold hours committed to this program by our volunteers will be lost. We risk losing the best and brightest investigators. Clinical trials cannot start. Families are left without hope.”
Some programs could be stopped completely without funding for the SDP. One example is a 15-year study (now only halfway completed) that is following 8,000 children from birth to determine which environmental factors may influence the onset of Type 1 diabetes. The results, currently being analyzed at the NIH, could lead to a discovery to stop the onset of Type 1 diabetes.
The list goes on: studies attempting to halt the autoimmune attack, research to create encapsulated beta cells to treat diabetes in a simple way, and more, is all happening under the banner of the Special Diabetes Program.
Groups are on high alert now, asking constituents to write and call their elected officials and demand that SDP funding be renewed. Rice said the need is urgent.
“The Special Diabetes Program is critically important to our mission – the joint efforts of JDRF and the National Institutes of Health are accelerating artificial pancreas systems, prevention therapies, and beta cell research that will someday cure this disease,” she said.
The program has long been renewed thanks to successful advocacy, led mostly by JDRF, as well as the American Diabetes Association and other smaller organizations. JDRF advocates took to the hill last spring to push for renewal, and last summer 140 children with Type 1 diabetes from across America did the same.
Although the program has gained widespread bi-partisan support, it could languish into obscurity this week. Voting is imminent, and advocates are hoping the program is reinserted into the resolution.
“We are still pushing for the best possible outcome,” said Rice.
With diabetes being considered an epidemic tiday, this research is vital and should never lose funding
Dear Moira, It certainly not my intention to insult you, I have nothing to gain, but you need to educate yourself. $2.5 billion is a drop in the bucket, your talking Washington DC and nobody cares. To open your eyes, start with The American Diabetes Association. When Grandma dies of complications from Diabetes and you gather the children to walk in her namesake at the ADA….at best that dollar you raise 4.5 cents will go toward T1D research and 4.5 cents will go toward T2D research. Over 80 cents goes to buzzword terms like: salary, administration and EDUCATION. I love… Read more »
$2.5 billion and no type1 cure. Stolen tax payer money given for what. I thought a cure was promised in 5 years 40 years ago.
Any news on this? My child was just dropped from the study after ten years. Funding cuts were given as the reason.
Trial Net kicked my daughter out of the pathway to prevention study after ten years. The email I received this week said it was due to “funding cuts” at the NIH, but I don’t believe this. Anyone heard this? I think it’s because I asked too many questions. We asked many questions of our son’s doctors and of the Trial Net investigators, who, for years happened to be one and the same person. No information was given to us about prevention, preserving beta cells, attempting reversal or anything, other than “there is nothing you can do except try to maintain… Read more »