WASHINGTON, D.C.—U.S. Senators Susan Collins and Joseph Lieberman today chaired a hearing where children and adults talked about their struggles with Type 1 juvenile diabetes, the escalating cost of care and the need for continued federal funding to help find a cure. The hearing, titled “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure,” featured testimony from children who have been diagnosed with diabetes, including 11-year old Hannah Ryder of Cumberland, Maine, and J. Patrick Lacher III of South Glastonbury, Connecticut.
Ryder told the Senate panel that her life “changed forever three years ago” when she was diagnosed with diabetes. She testified about the efforts she and her family have made to raise money for diabetes research, holding local fundraisers and bake sales. Last year, through those efforts and the help of her walk team – “Hannah’s Heroes” – the group raised more than $5,000.
“I really don’t want other kids to get diabetes,” she told the committee.
Ryder and Lacher were among 150 children attending the hearing as members of the “Children’s Congress” representing the Juvenile Diabetes Research Foundation (JDRF). Other committee witnesses included actress Mary Tyler Moore, Grammy-nominated singer/songwriter Nick Jonas of The Jonas Brothers, boxing legend Sugar Ray Leonard and Dr. Griffin Rodgers, Director, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.
“As the founder and Co-Chair of the Senate Diabetes Caucus, I have learned so much about this disease over the past few years and the heartbreak that it causes for so many American families as they await a cure,” Collins told the audience. The devastating illness affects nearly 24 million Americans, with some 1.6 million new cases diagnosed each year. Currently, there is no known way to prevent or cure diabetes and controlling the disease can be difficult and limiting.
“It is estimated that diabetes accounts for more than $174 billion of our nation’s annual health care costs. Health spending for people with diabetes is almost double what it would be if they did not have the disease,” Collins said. “These statistics are overwhelming and they compel us to act. But what really motivated me to devote so much energy and time to diabetes was meeting more and more their families like our delegates today.”
Senator Joseph Lieberman, chairman of the Committee on Homeland Security and Governmental Affairs, told the roomful of children that they were an inspiration. “Although research has produced extraordinary medical breakthroughs to treat this disease, a cure is still out of reach. Your message is absolutely inspirational as is the way in which you manage this problem every day. So, our fight continues until we can tell those of you diagnosed with Type I diabetes: ‘We have a cure.’ ”
Since Collins founded the Senate Diabetes Caucus, federal funding for diabetes research has more than tripled, now totaling more than one billion dollars.
Actress Mary Tyler Moore, International chairman of JDRF, told the committee that she has “endured the ups and downs” of Type 1 diabetes for almost 40 years. She said the young delegates from across the United States and several countries “join me to participate in the 10th anniversary Children’s Congress. We acknowledge the remarkable progress we’ve made. We reflect on the challenges which remain.”
Curing diabetes, Moore said, “is an enormous task. We can’t do it alone. And that’s why we’re here.”
Sugar Ray Leonard said his decision to move from amateur to professional boxing was driven by his desire to pay for his father’s costly diabetes care. He said the chronic disease “imposes a huge emotional and financial burden on patients and their families.”
“Life with diabetes is like life in the boxing ring. Some days, you don’t have your ‘A game,’ and your opponent can get the best of you. Other days, you’re managing the fight well and able to outsmart and outbox your opponent.”
Still, he said, “the fight against diabetes is a tough one. Some days, nothing seems more difficult, more impossible, to battle.”
Musician Nick Jonas said he must check his blood sugar up to 12 times a day, each time by pricking a finger to draw blood. His said his last test was right before the hearing began. “Like everyone here today, I know that the promise of a cure lies only in research,” Jonas said. “In the meantime, I’ve decided not to let diabetes slow me down. In just the last two months, my brothers and I have launched a new TV show, released our third album and begun a world concert tour.”
He said he appeared before the committee to tell the children assembled in the audience “that they can live their dreams while living with diabetes.”
Some of the most moving testimony came from Ellen Gould of Nashville, Tenn., who appeared with four of her children – Patrick, 17, Sam, 12, Sarah, 10 and Oliver, 5 — all of whom have Type 1 diabetes. The family’s four other children do not suffer from the disease, she said, but they are concerned about being diagnosed with it at some future date. She said her younger children ask, “When am I going to get diabetes too?”
“Finding a cure means everything to my family and we are willing to be part of the solution even with juggling our already busy life,” Gould said. Over the years, her children have participated in diabetes research studies and will continue to do so.
“This isn’t just about the Gould family,” she said. “It’s about the thousands of children who have to live with this terrible disease every day.”