ARUNDEL — Isabelle Levesque’s hands were shaking and sweaty, so much that her nail polish ”“ which she said was “perfect” earlier ”“ had run off completely by the end of the day. But it didn’t show at all in the nearly two hours she sat testifying and answering questions from a Senate panel on Type 1 diabetes.
Sen. Susan Collins, R-Maine, who convened the hearing and chairs the United States Senate Special Committee on Aging, said 10-year-old Arundel girl’s nervousness didn’t show.
“That was perfect,” Collins said after Levesque finished her testimony. “You did a great job.”
Isabelle, who was diagnosed at age 3 with Type 1 diabetes, was selected as one of 160 Children’s Congress representatives of the Juvenile Diabetes Research Fund who went to Washington, D.C. from July 14-16. Hers was one of more than 1,600 applying for the honor.
Both Isabelle and another Mainer, national high school long jump record holder Kate Hall of Casco, provided testimony in front of Senators Collins and Jeanne Shaheen, D-NH, the co-chairs of the Congressional Caucus on Diabetes as well as Sen. Bob Casey, D-PA, and Sen. Elizabeth Warren, D-MA.
Isabelle’s testimony focused on the daily challenges and discomfort of living with Type 1 diabetes, and how Congress can help by supporting new technologies.
“My diagnosis was the start of a very different childhood,” Isabelle said to the audience assembled in the Senate chamber. “My mom and dad began a routine of 10 to 12 finger pricks and six insulin shots each day, to keep my blood sugar in a healthy range. As of today, I have pricked my finger over 28,000 times, changed my pump site over 1,400 times and changed my sensor over 400 times. Can you imagine having to stick a needle into your skin 30,000 times in just eight short years?”
While the Children’s Congress was there primarily to thank the Senate for passing a two-year, $300 million extension to the Special Diabetes Research Fund, they also advocated for alterations to the Medicare reimbursement program, which currently doesn’t pay for continuous glucose monitors for retired people, according to Isabelle’s father, Ken Levesque, who accompanied her to Washington.
“They have one of these (continuous glucose monitors) until they turn 65 and Medicare doesn’t cover it anymore,” Ken Levesque said.
CGM are tiny devices planted under the skin which tracks the amount of glucose in a person’s blood day and night.
Collins asked Isabelle about her experience with her continuous glucose monitor, which allows her parents to check her glucose levels on a smartphone.
“Even if they are across the world, they can still see what my numbers are,” Levesque said.
Ken Levesque said that new technologies like these make life easier for people living with Type 1 diabetes, but that more funding is necessary to explore the “multivariate” research that could help ”“ exploring prevention as well as alleviating symptoms. Private donations from the JDRF match the $150 million that Congress has dedicated to funding diabetes research.
“The more money we have the faster we get a cure,” Ken Levesque said. “But (research is) not just finding a cure but also trying to prevent diabetes.”
Though the event was a “once-in-a-lifetime” experience according to Isabelle, she will still be participating in the Juvenile Diabetes Research walk every year. Her team, Strides for Isabelle, has raised over $100,000 for diabetes research to date.
At the end of her testimony, she left the crowd with some advice for people who face a new diagnosis of Type 1 diabetes.
“I would say ”¦ make sure no one stops you from doing anything just because you have Type 1 diabetes,” Levesque said.
“Okay,” Sen. Collins said to Sen. Bob Casey after the applause for Isabelle ended. “Try to top that.”
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