The Special Diabetes Program: What It Is and How You Can Help
This resource was created in partnership with JDRF, an active partner of Beyond Type 1 at the time of publication, through the JDRF – Beyond Type 1 Alliance. It is being updated as funding for the SDP is renewed; the last update carries funding through December 18, 2023.
Did you know that various U.S. health centers receive, if voted upon, $150 million per year for type 1 diabetes research? And did you know that you can influence whether or not they receive this vital funding? Keep reading to learn more about the Special Diabetes Program and how you can keep it going.
What is the Special Diabetes Program?
The Special Statutory Funding Program for Type 1 Diabetes Research, or Special Diabetes Program (SDP) is a government funded program that provides roughly $150 million annually for type 1 diabetes research. The funding is voted on by members of Congress and the money is allocated to various promising diabetes-focused research programs and clinical trials.
Why does it matter?
In 1997, a U.S. Congressional Diabetes Research Working Group reported that limitations and lack of progress in diabetes research and treatment were a result of lack of funding. The SDP was established and has since funded monumental research to dramatically shift the way we understand, treat and search for preventions and cures for type 1 diabetes.
In its first three years, $30 million was allocated toward type 1 diabetes (T1D) research each year; in the following three, $100 million per year. Starting in 2004, $150 million has been allocated each year (with minor funding variations in 2014, 2015 and 2017) because of the life-impacting research the funding has produced.
Discovery, innovation and development happens faster with more funding—it keeps the lights on in labs and allows promising researchers to focus on their important work for longer, more dedicated periods of time.
Better understanding why T1D happens, developing artificial pancreas technology, and driving advances in vision improvement for people with T1D are just a few of the things that have been accomplished through SDP funding.
How does it work?
Funding for the SDP is always attached to greater budgetary legislation, so while the SDP receives bipartisan support for the clear benefit it provides and innovation it produces, it can be impacted by larger national budgetary discussions.
For example, in 2015, the SDP was attached to the Medicare Access and CHIP Reauthorization Act, while in 2018 it was part of the Bipartisan Budget Act. Depending on the legislation it is attached to, sometimes the SDP can be renewed for multiple years at a time while sometimes, like most recently, it is approved for short periods of time in an attempt to keep funding going while larger budgetary negotiations continue.
Once funding is approved, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) oversees the program as part of the National Institutes of Health (NIH), in collaboration with the Centers for Disease Control and Prevention (CDC) and other health institutes.
The NIDDK invites researchers to apply for funding opportunities based on current innovation in the field. At present, funding opportunities are open for novel approaches for open or closed loop hormone replacement therapies, further insight into what happens to beta cells immediately before and following a diagnosis of type 1 diabetes (which could help researchers discover how to prevent or delay T1D), novel approaches to cell replacement therapies (like beta cell replacements) and more.
In addition to the funding opportunities, the NIDDK has created a collection of research tools to allow all future research to build upon the past; instead of each researcher needing to start new or collect entirely new samples, a collection of research tools, technologies, biological samples, data, etc. are available for researchers to learn from and analyze.
By pooling resources, research can move faster, with larger sample sizes and more accurate data to pull from. This benefits not only researchers funded by the Special Diabetes Program, but the entire diabetes field.
What’s the SDP’s current status?
After over a year of short term renewals—which impacted continuity in research funding—the SDP was fully funded at $150 million per year for three years, with the current renewal lasting through December 18, 2023.
Congressional Diabetes Caucus Co-Chairs, Representative Diana DeGette (D-CO) and Representative Tom Reed (R-NY) and Senate Diabetes Caucus Co-Chairs, Senator Susan Collins (R-ME) and Senator Jeanne Shaheen (D-NH) champion efforts to renew multiple year SDP funding.
What’s at stake?
Because SDP funding must be voted upon and is not guaranteed, multiple diabetes non-profit organizations, alongside individual advocates, continue to reach out to members of Congress about the importance of continuing to pass multi-year funding for the Special Diabetes Program. Multi-year funding provides consistency and enables long term research to take place.
Without the SDP, researchers funded through the program would need to find alternate sources of funding and risk being paused or shut down until funding can be procured. This stops research and clinical trials for things like beta cell replacement therapy, artificial pancreas technologies and prevention methods.
What can you do about it?
If you live in the U.S., you are represented by local, state and federal politicians. The SDP is voted upon at a federal level.
At a federal level, you are represented by one Congressional Representative and two U.S. Senators. You can reach out to the Congressional Representative that represents your district and to both of your State Senators about issues that matter to you.
Sharing your type 1 diabetes story with your local congressional representative and your senators makes a big difference in how they vote on the SDP. While the Special Diabetes Program receives bipartisan support, Congress is faced with many other funding decisions.
Let your representative and senators know how diabetes research funded through the SDP directly impacts your life, and what it will mean moving forward.
Your voice makes a big difference in ensuring $150 million in vital funding is provided for type 1 diabetes research every year. With it, the diabetes research community will continue to work toward preventions, cures and, in the meantime, better ways to more safely live with type 1 diabetes.
Information provided in this overview is from the NIDDK and JDRF.
If you would like to contribute to T1D research and fund cures, make a gift to JDRF here.