Congress needs to protect the special diabetes program during a pandemic

Diabetes currently affects over 34 million Americans and costs an estimated $327 billion per year. The COVID-19 pandemic has made the risk of serious health complications even greater for individuals with diabetes, especially for American Indians and Alaskan natives who are disproportionately affected by both diabetes and COVID.

We need a long-term extension of the Special Diabetes Program (SDP) to advance critical research and support diabetes programs for vulnerable populations. This program is set to expire on Dec. 11 unless Congress acts now.

Congress created the Special Diabetes Program in 1997 to advance research in type 1 diabetes and to address the disproportionate burden of type 2 diabetes on American Indians and Alaskan natives. It is comprised of two programs: 1) the Special Diabetes Program for type 1 diabetes, which is administered by the National Institute of Diabetes and Digestive and Kidney Diseases of the NIH and supports research on type 1 diabetes; and 2) the Special Diabetes Program for Indians (SDPI), which is administered by Indian Health Service (IHS) and supports critical prevention, education and treatment for indigenous communities as part of IHS, Tribal, and Urban Indian health programs across the United States.

Each program has been supported at $150 million per year since 2004. SDPI has led to remarkable improvements in diabetes care and health outcomes for American Indian and Alaska Native people. The Special Diabetes Program has led to tremendous advances in the understanding of the cause of type 1 diabetes and stimulated efforts to improve the treatment and prevention of type 1 diabetes.

However, Congress has fallen into a pattern of only providing short-term extensions of the SDP — these disrupt the success of these programs and create considerable uncertainty for researchers and health care providers. There were five extensions lasting only several weeks to a few months since September of 2019. Short-term extensions do not allow for strategic planning for research and disrupt programs that could save lives during the pandemic. Under these short-term extensions, planning large scale projects is nearly impossible. Because of this uncertainty, programs cannot hire or retain staff or initiate programs that build on SDP-supported successes. This effect is amplified due to the current pandemic because research costs are much higher than anticipated.

A five-year reauthorization of the SDP at $150 million per program, per year would support these impactful programs that are reducing the burden of diabetes in American Indian and Alaskan native populations and also support research that has led to innovative technologies like the artificial pancreas which is changing the lives of people with diabetes by automating insulin delivery and glucose sensing. It would also support breakthrough clinical studies that are discovering the causes of type 1 diabetes and take years to conduct as these studies follow patients over time and need long-term, stable funding.

The Endocrine Society, JDRF, and the National Indian Health Board strongly support long-term renewal of the Special Diabetes Program, and we recently held a virtual congressional briefing to emphasize what will be lost if Congress fails to act now. Many of the exciting advances in diabetes research and care that are happening right now are due to the Special Diabetes Program.

The Special Diabetes Program has been remarkably successful since its inception, and long term-reauthorization is crucial for advancing our understanding of the disease and improving the lives of people with diabetes. As we look to the future, the programs and people supported by SDP will lead to new treatment options so people with diabetes can live normal lives.

Alvin C. Powers, M.D., is a member of the Endocrine Society and a physician-scientist at Vanderbilt University Medical Center where he sees patients and conducts research. He can be reached by email at al.powers@vumc.org.