Advocates Testify at Senate Diabetes Hearing

Senator Bill Nelson, of Florida, chair of the Senate Special Committee on Aging, and Senator Susan Collins, of Maine, ranking member of the committee, convened the eighth biennial Senate Diabetes Hearing on July 10. The culmination of Children’s Congress—JDRF’s flagship advocacy event—the hearing offers JDRF advocates young and old the opportunity to speak up on behalf of the type 1 diabetes (T1D) community. This year’s testimony presented personal, medical, and economic arguments in support of our goal—persuading Congress to renew the Special Diabetes Program (SDP) before the end of 2013.

Joining Senators Nelson and Collins at the hearing was Senator Jeanne Shaheen, of New Hampshire, who serves as co-chair of the Senate Diabetes Caucus along with Senator Collins. Other senators in attendance were Senators Richard Blumenthal, of Connecticut; Joe Donnelly, of Indiana; Kelly Ayotte, of New Hampshire; and Elizabeth Warren, of Massachusetts.

JDRF’s panel of testifiers (left to right): JDRF Celebrity Advocate Jean Smart; delegate Walker Allen (6, FL); Walker’s father, Celebrity Advocate Ray Allen; Director of the NIDDK Griffin P. Rodgers, M.D.; JDRF President and CEO Jeffrey Brewer; and delegate Quinn Ferguson (14, ME)

JDRF Celebrity Advocate Jean Smart provided the first testimony of the afternoon. Diagnosed with T1D at age 13, she went on to become an Emmy-winning television, film, and stage actress. “Unfortunately, many of my generation who were diagnosed with diabetes as children have suffered high rates of heart attacks, strokes, blindness, nerve damage, complicated pregnancies, and kidney failure … What I really pray for is that the next generation of young, beautiful children like these will never know the uncertainty and fears of being diabetic….”

With his six-year-old son, Walker, sitting next to him, NBA All Star Ray Allen gave heartfelt testimony on his son’s behalf. Diagnosed when he was a year old, Walker participated with the Children’s Congress Florida delegation. “For our son Walker and any family living with T1D, there are no days off,” Mr. Allen said. “Every day with T1D is a new day; what works one day may not work the next day, and risks are ever-present.”

Griffin P. Rodgers, M.D., director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), gave compelling testimony about the research progress enabled by the SDP. “I am pleased to report that the future for those with type 1 diabetes is brighter than ever before. Life expectancies for those diagnosed with type 1 diabetes have risen dramatically. Recent NIDDK-supported research found that a person diagnosed with type 1 diabetes between 1965 and 1980 could expect to live a full 15 years longer than a similar person diagnosed 15 years earlier.”

JDRF President and CEO Jeffrey Brewer—himself the father of a son with T1D, spoke eloquently about the burden of T1D, both for those who live with the disease and for the country. “Diabetes costs are rising rapidly. According to a new study released today, the costs of diabetes are expected to more than double in the next eight years … Diabetes is a health crisis for patients and their families and a financial crisis for every American … We must make the promise of lifesaving and cost-saving diabetes therapies a reality.”

Finally, Quinn Ferguson, 14, the Children’s Congress delegate from Maine, spoke from the heart—for himself, for the other delegates sitting before the Senate panel, and for the entire T1D community. “Voices have been silenced and lives cut short because of this disease. I am here today to speak for them as well as speak for myself. And I am not alone in my story. People are misdiagnosed every day, or not diagnosed at all, suffering the consequences and sometimes paying the ultimate price,” Quinn said. “Thanks to medical research, life will get better—it has to. I am not giving up on a cure, and I hope Congress won’t either and will continue to support the Special Diabetes Program—my hope for a cure.”

We thank Senators Nelson and Collins for providing a forum for the public to hear these moving personal stories about living life with T1D and to learn more about the significant advances in diabetes research that have been achieved thanks to the federal government’s investment in the Special Diabetes Program—a program that must be renewed by Congress this year.

Complete Coverage: JDRF 2013 Children’s Congress

Children’s Congress Delegate Blog

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Catrina Curtis — 15 years old, Mississippi

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Amelia Rehrman — 11 years old, Pennsylvania

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Reed Gialketsis — 17 years old, Nevada

A Numbers Game, or: We Are All Number One

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