Congress Quietly Abandons Its Help for Diabetic Kids

The Special Diabetes Program funds critical research. It also costs relatively little. Somehow, it’s managed to go unfunded for three months.

Photo Illustration by The Daily Beast

For months now, a program dedicated to funding critical breakthroughs in diabetes research has been on hold, set off to the side amid Congress’ obsessive focus on repealing and replacing Obamacare.

Now, as a fix is on the horizon, advocates fear that legislative gridlock may get in the way again.

The uncertain future of the Special Diabetes Program has received scant attention outside a small and dedicated universe of advocates who have begged the press to cover the matter for months. One reason it has fallen under the radar is that, compared to other federal health care initiatives that have gone unauthorized by Congress—mainly the Children’s Health Insurance Program (CHIP)—SDP is a drop in the bucket. The program relies on a mere $300 million over two years.

But even that small amount of money has had a tangible impact. By funding research through the National Institutes of Health, the program has backstopped technologies to combat Type 1 diabetes, been instrumental in the development of the first-ever artificial pancreas, and done exhaustive, year-long studies into what triggers Type 1 diabetes in kids.

Advocates were shocked to see Congress had not reauthorized the SDP when its funding ran out in September as their attention was turned to Obamacare (its sister program, the Special Diabetes Program for Indians, did get a three-month funding reprieve at the time, but it too now needs a $300 million, two-year authorization). The program has a rich bipartisan history. It began in 1997 as the brainchild of House Speaker Newt Gingrich and Clinton White House chief of staff Erskine Bowles. Currently, there are 75 senators who have signed a letter supporting its funding alongside 356 House members.

“I am unfamiliar with the current [legislative] state of play,” Gingrich said when reached by phone. “But diabetes is an enormous and growing problem in this country and I’d do everything I can to support research both into managing the disease and potentially how you cure it.”

While lawmakers seem aware of the problem, the legislative fix remains uncertain. Sen. Jeanne Shaheen (D-NH) has brought the issue to the attention of Senate leadership several times, her office told The Daily Beast. A Sept. 20 letter from her and her Senate Diabetes Caucus co-chair, Sen. Susan Collins (R-ME), to leadership called for “immediate action” by the end of that month. But it never materialized.

A two-year extension of the SDP is included in a government funding bill that the House is soon to consider. But a House aide said it was “hard to handicap” whether it will ultimately pass because it was included under the same legislative umbrella as the CHIP authorization. Members remain deeply divided over that provision and the possibility exists—as the aide conceded—that it ultimately gets pulled from the government funding bill in order to be dealt with separately.

Should that happen, a fairly dire situation for the SDP would get worse, advocates said. Although the NIH has seen substantial funding increases in the past few years, the SDP streamlines focus on diabetes research. Currently, researchers who have existing grants can continue their research. But those applying for grants have been told their applications can’t be dealt with until the funding situation is resolved.

“It means this important type of research that would help people have better control of their diabetes won’t be able to move forward,” Cynthia Rice, the senior vice president of advocacy and policy at Juvenile Diabetes Research Foundation, told The Daily Beast. “There will be delays in important research programs moving forward and, ultimately, researchers may leave the field because they see it as an uncertain future.”