A high school student from western Iowa who has type 1 diabetes is in Washington D.C. this week, lobbying members of Iowa’s congressional delegation about medical research funding.
Fifteen-year-old Claire Hennessy, of Logan, says she’ll meet today with Iowa Congressman Steve King and Senators Chuck Grassley and Joni Ernst. “Our mission is to talk to our congress members about getting approved to continue finding for diabetes research which will involve, ultimately, a cure but until we get the cure, funding for technologies to help us live as we are right now,” Hennessy says, “so, new pumps, artificial pancreases and things like that.”
Hennessy says the insulin she needs to live costs her family about $7,000 a year, but if they didn’t have insurance, the bill would be over $27,000s a year. “It’s scary if you don’t have insurance,” she says. “I can’t believe what many people have to go through. It’s a very expensive disease.”
Every two years, more than 150 children living with type 1 diabetes from across the U.S. gather in Washington for the Juvenile Diabetes Research Foundation Children’s Congress to meet face-to-face with decision-makers. Hennessy was diagnosed with juvenile, or type 1 diabetes, when she was just five years old, so already, she’s dealt with the disease for a full decade.
“When I was younger, I was kind of afraid to give shots or check my blood sugar in front of people and then I became more comfortable,” Hennessy says. “Then again in middle school, and then starting high school this past year, it was just kind of awkward, feeling different than everyone else.”
In addition to the social aspects, the disease has had a critical impact on her health. “I’ve had many medical scares. I’ve been in the hospital multiple times due to pump failures or being sick and not being able to get back to where I want to be,” Hennessy says. “It would just get out of control, being no one’s fault. No one realizes how scary it is.”
Hennessy hopes to relay to lawmakers what it’s like to live with diabetes and why research to fund life-changing therapies until a cure can be found is so important. The Special Diabetes Program (or SDP) is a critical program that currently provides 150-million dollars a year for type 1 diabetes research at the National Institutes of Health. Funding for SDP is set to expire on September 30th of this year.