The Special Diabetes Program: Its successful history and crucial future

By Talley Henning Brown

This fall, JDRF and the type 1 diabetes (T1D) community have a special opportunity to make legislative history once again—by persuading the 112th Congress to renew the Special Diabetes Program (SDP). Funds provided by the SDP have supported advances in the basic scientific understanding of T1D, improved treatments for both blood-glucose control and diabetes-related complications, and explored ways to prevent and/or delay the onset of the disease. A testament to the power of JDRF advocacy in generating critical support from members of Congress, the SDP has provided nearly $1.9 billion to the National Institutes of Health (NIH) specifically for T1D research.

The SDP is scheduled to expire in September 2013. While Congress has a history of renewing the program early to ensure the best use of federal funds and prevent crucial NIH research projects from being halted or slowed, it is faced with an incredibly difficult budget environment this year. JDRF advocates, volunteers, and staff are working hard to encourage members of Congress to renew the program this year, and we need all the help we can get. Here is what you need to know: every voice counts. Your voice counts.

JDRF and the SDP: Advocacy in action

When Congress decided to create the SDP as part of the Balanced Budget Act that was passed into law on August 5, 1997, JDRF and its advocates and volunteers had a major victory to celebrate. The original legislation provided an unprecedented $150 million over five years ($30 million per year) to the NIH’s research budget for T1D. It also allocated the same amount for diabetes treatment and prevention efforts specific to Native Americans, a segment of the population that suffers disproportionately from type 2 diabetes.

The program, which has been renewed several times since with broad bipartisan support in Congress, is currently funded at $150 million per year. Some of those renewals were passed in challenging years. At the end of both the 2000 and 2002 sessions of Congress, for example, the program was in danger of being either tabled until the following year or rejected entirely. Aside from the biggest priority of helping the approximately three million people in America with T1D, JDRF made the case that investments even in better treatments—let alone a cure—for this costly disease would have the potential to save significant taxpayer money in the long run. Ultimately, JDRF advocacy prevailed and the SDP was renewed both times—with a $240 million increase in 2000 and an additional $750 million in 2002. Extensions and additional funding were granted again in 2007, 2008, and 2010. “JDRF’s passionate and committed volunteers and staff from across the country made these victories for T1D research possible,” says JDRF Vice President of Government Relations Cynthia Rice. “Each time, the renewal is more challenging, but the JDRF community always rallies.”

Translating opportunities into results 

The federal investment in T1D research is making a real difference. According to JDRF Chief Scientific Officer Richard A. Insel, M.D., “The Special Diabetes Program is critical to JDRF’s research strategy, funding long-term clinical trials and collaborative research networks that accelerate a cure, better treatments, and prevention of T1D. JDRF and other private funders can’t do it alone; we need support from the federal government.”

The progress that SDP has helped make possible includes:

Cure 

• Proteins have been identified that promote the regeneration of beta cells.
• Cells that do not normally produce insulin have been reprogrammed into insulin-producing cells.
• New immune therapies have been shown to prolong the “honeymoon period” after T1D diagnosis.
• Islet transplantation has been demonstrated to reduce the daily burden of T1D. 

Treat

• The Artificial Pancreas Project has been significantly accelerated.
• After clinical trials proving its effectiveness in reversing vision loss in patients with diabetic macular edema, the drug Lucentis has been approved to treat the complication.
• Intensive blood-glucose control has been shown to significantly reduce the incidence of diabetic nephropathy.

Prevent

• More than 50 genes or genetic regions associated with T1D have been identified.
• Researchers are midway through a study to determine the environmental factors that may trigger the autoimmune process in T1D.
• Key differences have been identified in the digestive-system microorganisms of people with T1D, which could lead to preventive strategies.

The SDP is proof-positive of the remarkable advancements that can happen when the best research opportunities receive the funding they need. Many of the results achieved through SDP-supported research have generated new insights, challenged assumptions, and led to new avenues of research that must be explored. But many projects currently under way and other promising new opportunities can be examined only if funding is continued, and the SDP, which represents about 35 percent of the federal budget for T1D research, is a big part of that.

What the T1D community could lose

There is a lot at stake with the renewal of the SDP. The TEDDY study, which is intended to help identify the environmental triggers of T1D autoimmunity, and the Clinical Islet Transplantation Consortium are both 100 percent funded by the SDP and will be significantly scaled back if the SDP is not renewed this year. In the case of TEDDY, such an outcome would jeopardize the high subject-retention rate that is essential to the success of the study, thereby putting off the achievement of meaningful results for years. Other networks and studies doing important T1D research are also heavily dependent on SDP funds: the Diabetes Research in Children Network (67 percent SDP funded), the Beta Cell Biology Consortium (75 percent), the Animal Models of Diabetes Complications Consortium (59 percent), and the Type 1 Diabetes TrialNet (67 percent). The progress of these initiatives and others would be negatively impacted if the SDP is not renewed.

The SDP is helping save lives and money

People who are living with T1D, and their loved ones and caretakers, know the stakes on a very personal level. But there is another important reason to support the renewal of the SDP, one that most members of Congress would be hard-pressed to argue against—it has the potential to save the country a lot of money. The facts are pretty straightforward:

• Diabetes costs the U.S. economy $174 billion a year. One out of every 10 healthcare dollars is spent on diabetes and its complications. One out of every five healthcare dollars is spent caring for someone with diabetes.
• The medical costs of Americans with diabetes are more than twice those of people without the disease. For children, the cost is six times higher.
• Diabetes-related healthcare costs are expected to triple in the next 25 years.

If unabated, the current rate of increase in the number of new yearly T1D diagnoses will double for every future generation.

Research for a cure, better treatments, and prevention of T1D could have untold benefits in terms of healthcare costs, according to Ms. Rice. “Identifying those who are at risk for the disease before they are diagnosed and delaying or preventing the onset of the disease will save years’ worth of costly treatments. And achieving better blood-glucose control in those who have T1D can help prevent expensive-to-treat and burdensome complications. A key message to Congress is that an investment in SDP benefits our nation’s economy.”

Don’t stop now

Our story has resonated throughout Congress. Thanks to your voices and the leadership of Senators Susan Collins (R-Maine) and Jeanne Shaheen (D-New Hampshire) and Representatives Diana DeGette (D-Colorado), Ed Whitfield (R-Kentucky), Xavier Becerra (D-California), and Tom Reed (R-New York)—the co-chairs and vice chairs of the diabetes caucuses in Congress—earlier this year, 272 representatives and 72 senators sent letters to the Congressional leadership that recognize the important advances that are the result of the SDP. The next step is to have Congress enact legislation that will include a multiyear renewal of the SDP before the end of this year.

So what can you do to help? Sign up to be an advocate at advocacy.jdrf.org and stay in the loop via email, or find us where you are—Facebook, Twitter, or the Advocacy blog on Juvenation. All are great ways to stay informed and participate in calls to action that will help continue federal funding of T1D research.

If you or anyone you know has a direct connection to a senator or representative, make that connection work for you. Again, all it takes is a conversation. But that could be the conversation that helps us to change millions of lives forever.