By Susan L. Barr
What comes to mind when envisioning a “Senate hearing”? Serious men and women engaged in somber statements and reading from weighty documents?
Picture this instead: a panel of United States senators listening intently to compelling testimonies about the burden of living with type 1 diabetes from distinguished witnesses—a celebrity advocate and parent, a diabetes researcher, a regulatory expert, and four Children’s Congress delegates—framed by a vivid sea of blue T-shirts worn by the 155 delegates of the JDRF 2011 Children’s Congress.
The Senate hearing is the culminating event of the biennial JDRF Children’s Congress, one of the most powerful advocacy events in Washington, D.C. It caps off almost three days of incredible activities—comprising the largest media and grassroots advocacy event held in support of finding better treatments and a cure for type 1 diabetes. The “faces” of this urgent need are the delegates, ages 4 to 17, from all 50 states and seven countries outside the U.S. The Senate hearing is the final touch point between the delegates, research and regulatory experts, and Congressional lawmakers—it is designed to create synergy to advance the science further and faster.
Entitled “Transforming Lives through Diabetes Research,” the hearing was held before the Senate Committee on Homeland Security and Government Affairs on Capitol Hill on June 22. Those testifying included celebrity advocate Kevin Kline, Griffin P. Rodgers, M.D., Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health, and Charles Zimliki, Ph.D., Chair of the Artificial Pancreas Critical Path Initiative at the U.S. Food and Drug Administration (FDA), along with four Children’s Congress delegates, ranging in ages from 7 to 17 years old.
Senator Joe Lieberman of Connecticut, Chairman of the Homeland Security and Government Affairs Committee, turned over leadership of the hearing to Ranking Member Senator Susan Collins of Maine, who co-chairs the Senate Diabetes Caucus with Senator Jeanne Shaheen of New Hampshire. “Type 1 diabetes is a life-long condition, and it is one that does not discriminate. It affects people of every age, race, and nationality,” said Senator Collins. “Funding for diabetes research has more than tripled, and as a consequence, we’ve seen some encouraging breakthroughs and we are moving closer to our goal of an artificial pancreas that would revolutionize diabetes care.”
In attendance at the hearing were Senator Daniel Akaka of Hawaii, Senator Mark Begich of Alaska, Senator Scott Brown of Massachusetts, Senator Frank Lautenberg of New Jersey, Senator Mark Pryor of Arkansas, and Senator Shaheen of New Hampshire. They heard testimony from Kevin Kline, who spoke eloquently about type 1 diabetes and its impact on parents, stating, “It is a disease that doesn’t stop—it is moment-to-moment, hour-to-hour, day-to-day. Tomorrow is not soon enough for an artificial pancreas.” His fellow actor and JDRF’s International Chairman, Mary Tyler Moore, although unable to attend, provided compelling written testimony. Ms. Moore, Mr. Kline, and Dr. Rodgers thanked Congress in their testimonies for the renewal of the Special Diabetes Program last December.
Dr. Rodgers, Director of the NIDDK, testified that through collaborative and coordinated research efforts with his institute’s partners, including JDRF, critical progress has taken place—supported by the Special Diabetes Program. He highlighted improved survival rates for people with type 1 diabetes, the identification of about 50 genes contributing to disease susceptibility, and improved treatments for complications such as diabetes-related macular degeneration.
“We look forward to continuing our partnership with JDRF and our sister federal agencies on research to combat type 1 diabetes and its complications,” he summarized. “We will continue to be diligent in our fight against the disease, to help all the children here and the many Americans whom they represent today—we will strive to improve their quality of life with the ultimate goal of curing type 1 diabetes.”
Dr. Zimliki, Chair of the FDA’s Artificial Pancreas (AP) Critical Path Initiative, testified about the status of issuing guidance to move the testing of the artificial pancreas into the outpatient setting. He answered questions from the senators—navigating challenging questions about the impact of the FDA review process on artificial pancreas research progress; why low-glucose suspend systems are already widely available outside the U.S.; and about the FDA’s approaches to ensure the quality and safety of these devices. Dr. Zimliki stated that he anticipated Phase II guidance for the artificial pancreas to be issued in December 2011. Acknowledging the frustration voiced by the senators, he assured everyone at the hearing that as an individual living with type 1 diabetes since age 13, he understands the importance of advancing the artificial pancreas. “Technology has come a long way, but even now we must prick our fingers multiple times a day, and over time it can really hurt—I admit, it’s really tough being a diabetic,” he said. “Current treatment is constant and pervades all aspects of a person’s life, presenting a particularly arduous burden for children and their parents.”
The hearing continued with the compelling testimonies of four of the Children’s Congress delegates. Caroline Jacobs, a 14-year-old delegate from Maine, described her eagerness for new technologies like the artificial pancreas. She summed up her family’s constant worrying about her disease—truly illustrating that type 1 diabetes is a disease that never sleeps. “I hope we will not have to wait too long for this device,” she said. “That way, I will no longer have to worry about others always worrying about me.”
Jack Schmittlein, a 13-year-old delegate from Connecticut, shared how grateful he was that Congress passed legislation to renew the Special Diabetes Program last year.This program is central to helping to find a cure for type 1 diabetes. He went on to tell the panel that the Special Diabetes Program has allowed for research that has led to the artificial pancreas, which would have a tremendous impact on his life. As a football and basketball player, he described the challenges associated with having to leave his teams in the middle of practices and games to check his blood sugar. The artificial pancreas would make his participation in the sports he loves much easier. “It would give me my life back, so I can just feel like a kid again, not a kid with diabetes,” he said.
Kerry Morgan, a 17-year-old from Virginia, provided testimony that recounted her participation in type 1 diabetes clinical trials since the age of three, including a trial testing the artificial pancreas. “I can honestly say that the closed-loop AP trial was the most amazing experience of my life,” she reported. “For two days, I had perfect control of my blood sugar levels. Two days of living with this technology provided me with the vision of what life could be like—life with far fewer complications, both short term and long term.”She also said with a big smile that “on the day the artificial pancreas is finally approved and released, people with this disease can say, ‘Diabetes: There’s an APP for that!’”
The youngest delegate who testified was Jonathan Platt, a seven-year-old from California who described how his disease makes him different. “Unlike other kids, I have to check my blood sugar 8 to 10 times a day and everything I eat is measured and every carbohydrate is counted,” he said. “I think I’m too young to have to worry about all this stuff.” Managing type 1 diabetes is a 24-hour job for Jonathan and his family, and he pleaded for more funding for research from the Senate panel with his closing remarks. “Please help me make this possible. My life depends on it.”
Senator Collins and other senators on the panel concluded the hearing with individual questions for each of the delegates who testified—focusing on issues about school, friends, and having fun. Senator Collins thanked all of the delegates for putting a “human face” on the statistics about type 1 diabetes and helping Congress to focus on what it can do to better understand and ultimately find a cure for the disease. In a simple but compelling summation, she told the delegates, “You make such a difference.”