Adriana Richard has lived with Type 1 diabetes since she's been five. She knows it's a daily struggle, but one she has been able to manage thanks to $150 million in annual research for a disease that is one of the most common chronic diseases affecting children.
Richard, a 16-year-old from Milton, testified in front of the U.S. Senate Special Committee on Aging in the U.S. Capitol on Wednesday, an invitee of Sen. Bob Casey.
The hearing — “Redefining Reality: How the Special Diabetes Program is Changing the Lives of Americans with Type 1 Diabetes" — highlighted Sen. Casey’s Affordable Health Care For Children With Disabilities Act, which would help cover the medical costs of children with disabilities, including the cost of care and insulin for children with Type 1 diabetes.
Wednesday's hearing centered on the impact of Type 1 diabetes on individuals and their families, research and the need to renew the Special Diabetes Program. SDP was created by Congress to "address the growing burden of diabetes on people living with the disease and our nation’s economy." The federal government provides $150 million annually for Type 1 diabetes (T1D) research at the National Institutes of Health (NIH) and is set to expire at the end of September.
Held by Sens. Casey and Susan Collins, the hearing featured more than 160 children and their families from across the country living with T1D.
“We’re so close to finding cures for diabetes and if we stop research now, there’s no way we will ever find it. We need the Special Diabetes Program for research…to help scientists and engineers invent things like the continuous glucose monitor that changed my life,” said Adriana.
"We must do everything in our power to help make life better for the more than 1.25 million Americans living with Type 1 diabetes,” Sen. Casey said. “That includes providing stable research funding to help find a cure through the Special Diabetes Program, which I recently helped vote out of committee. It also includes ensuring the cost of insulin for children does not bankrupt a family. That’s why I introduced a bill today that would encourage states to expand Medicaid coverage to children with disabilities, including Type 1 diabetes, regardless of their family’s income."
Richard, a member of the Pennsylvania Teen Task Force of the Juvenile Diabetes Research Fund, testified at the hearing that growing up with diabetes was difficult on her and her family.
"I have been motivated by the struggles I have experienced," she said. "See, I was diagnosed with type 1 diabetes when I was five years old. All I remember from my diagnosis was that my parents were scared for me. In elementary school, I was sometimes teased for being different or for always being with the nurse. School is already a stressful environment and having diabetes only makes it more difficult. I’ve gone through some hard times."
Richard said she was grateful for the funding provided by SDP — which allows her to get the insulin she needs for free through Medicaid — and encouraged the Senate to continue the program beyond September.
"People with T1D can do anything we set our minds too — we just have extra responsibilities," she said. "The research funded by SDP helps people like me – all of us here today – handle those responsibilities, and will ultimately give us a cure."