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By Matthew Vollrath/Special to The Almanac
How many people can say they’ve appeared before the United States Senate? Thomas Screven, a 16-year-old Portola Valley resident, can now count himself a part of this exclusive group.
Early last month, Screven flew to Washington, D.C., where he and 160 other kids from all 50 states advocated for research and funding for Type 1 Diabetes.
Screven has lived with Type 1 since he was 4 years old. Overall, he’s lived a healthy life — he plays baseball and soccer at his high school, the Woodside Priory, and has thus far avoided hospitalization. But the disease is high-maintenance, to say the least. For as long as he can remember, he’s had to continually monitor his blood sugar levels and administer insulin up to six times a day.
“Diabetes is always on my mind,” he said in an interview with The Almanac. “Maybe in the forefront, maybe in the back somewhere. But I’m thinking about it at some (level).”
Screven is far from alone. Nearly 1.25 million Americans live with Type 1, many of whom, like him, were diagnosed as children. It is this reality that gave rise to the Children’s Congress, a program sponsored by diabetes advocacy group JDRF that brings children from across the nation with Type 1 to Capitol Hill every two years.
During the week of July 8, Screven met with staffers of Congresswoman Anna Eshoo and Sen. Dianne Feinstein. He also attended a special Senate committee hearing, where he and his cohort, including some children as young as 4, shared their experiences of living with diabetes.
After giving their testimonies, the young delegates called for action. One issue they raised was the accessibility of insulin.
“It costs more than $100 a vial,” Screven said. “That’s way too high for a life-saving drug.” The high price comes from the fact that some insurance companies receive huge rebates on the drug while customers end up covering the costs, a system that national lawmakers could attempt to change, he explained.
The other thing they advocated for was research funding. When he was younger, Screven said, he had to manually test his blood sugar and inject his own insulin. Now, like many, he has an insulin pump, which is much easier and far less painful. Technology like this is the direct result of research funding for diabetes, he said.
Further research could lead to the development of a “closed-loop system” — an integrated blood sugar monitor and insulin pump, which would eliminate much of the daily hassle associated with the disease — or even, Screven says, a cure.
“There’s talk of implanting cells,” he said, which could possibly restore the ability of the pancreas to produce insulin on its own. “There’s a long way to go, but it’s closer than many people think.”
Screven says he came away from the week with a feeling of optimism. “[Diabetes] is a very bipartisan issue,” he asserted. The Special Diabetes Program, which provides $150 million in annual funding for diabetes research, is currently supported for renewal by 68 senators and 378 representatives. “There’s not really any problem passing it,” he said. “It’s more about ironing out the issues.”
He also came away with several new friends. “I have some people from the Children’s Congress I keep in touch with,” he said. “Once you see people with Type 1 Diabetes, you kind of form a bond, you know? You’re going through the exact same things.”
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Bravo, Thomas! So glad your voice is out there in the world, bravely doing good.
Ms. P