Article by Sumner Park
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Families and advocates delivered an emotional plea for more diabetes research funding before Congress on Wednesday.
People with type 1 diabetes, including over 160 children, were on hand for a hearing before the Senate Special Committee on Aging.
Those testifying urged lawmakers to extend the Special Diabetes Program, which funds research into type 1 diabetes. The program will run out of funds this September if lawmakers don’t act.
The families were joined by actor Paul Sparks, who stars on the Netflix hit “House of Cards.”
“We are at the cusp of a whole new generation of therapies, devices, and hopefully a cure,” Sparks, who was diagnosed with diabetes at the age of 28, told lawmakers.
“That’s why we can’t let up on research. We need to keep the momentum going by renewing the Special Diabetes Program before it expires at the end of September.”
Sparks brought his own family to the hearing to highlight how the disease affects others.
He recalled one night when he turned off a glucose monitor so that his then-pregnant wife could sleep peacefully without any beeping noises. But he awoke to a severely low blood sugar level and a worried wife.
Sparks said that made him realize how important those technologies were and the need to keep research funding.
The Special Diabetes Program was created in 1997 to promote efforts to cure and prevent diabetes, a disease that affect millions of Americans.
The program provides $150 million a year to advance type 1 research at the National Institutes of Health (NIH) and treatment and prevention programs with the aim of eventually finding a cure.
The program has historically had broad bipartisan support, and lawmakers expressed optimism it would get the funds needed.
“The amount of progress in the 20 years that I have co-chaired the diabetes caucus really is encouraging,” Chairwoman Susan Collins (R-Maine) said. “And we are going to keep working on that.”
The children who attended the hearing were part of the biennial Children’s Congress organized by the JDRF, a charitable group dedicated to promoting type 1 diabetes research.
Collins and Sen. Bob Casey (Pa.), the committee’s top Democrat, praised the letters of support from the group for the program.
The panel also heard from Angie Platt and her 14-year-old son, Jonathan, who testified about new technologies to help those with diabetes.
In April 2016, Jonathan Platt was enrolled in a pediatric trial for an artificial pancreas that can automatically control blood glucose levels. He stood up during the hearing and showed lawmakers his device, the first approved artificial pancreas system.
“The device has given Jonathan better blood sugar control than he has ever had,” his mother said. “And it gives our family some desperately needed peace of mind.”
The Food and Drug Administration approved the artificial pancreas in September 2016, and the device is currently undergoing further clinical trials for younger children.
“My artificial pancreas has really helped with my basketball games,” Jonathan Platt said. “When I was on the CGM [continuous glucose monitoring] pump, I would have to stay on the bench for an extended amount of time, and if I was low I wouldn’t be able to get back into the game at all.”
Among the other new innovations are treatments to improve vision for those with a diabetic eye disease.
But despite those advances, the families also shared their stories about the relentless struggle to deal with diabetes.
“The ugly reality of diabetes is that, as hard as we work, our kids are still vulnerable,” Angie Platt said.
Her son in June was found to have three dot hemorrhages at an eye exam.
“The [Special Diabetes Program] gives me hope, but it needs a hero,” Platt added.
Sen. Jeanne Shaheen (D-N.H.) also shared her granddaughter’s experience with type 1 diabetes.
“This chronic illness will not get any better unless we do the research,” she said.
And she praised the children who attended the hearing.
“You are the best advocates there could be,” Shaheen said. “And the stories you have to tell are what has moved this debate.”
Seventeen-year-old Lorynn Watt said she had lost her father to diabetes when he was just 38 years old.
“He didn’t have great care. No pump or CGM or even ability to check his blood sugar every day. So, he lost his foot, then his eyesight, and the use of his kidneys. He had to get a stent in his heart,” she said.
Watt also has type 1 diabetes.
“I am here, inspired by his memory, and determined that none of the kids here today or sitting in a hospital room right now, scared, as they get their diagnosis, will have the same fate as my father,” Watt said as she teared up.
Ten-year-old Charlie Albair urged senators to put money into research.
“We need money so scientists can invent new pumps and monitors better than what we have now,” Albair said. “I want my diseases to go away, for me and all the other kids who suffer from it. I want us all to be able to live without thinking about it.”
The panel also held a moment of silence to pay tribute to the late Mary Tyler Moore, a longtime champion in the fight against type 1 diabetes.
The actress, who passed away earlier this year, raised public awareness for the disease and helped raise billions for research.
“I am very heartened by this meeting that we had,” Sparks told The Hill after the hearing. “Sen. Collins and all the senators here seem very determined to make sure the program gets renewed.”