(ABC4 NEWS – SALT LAKE CITY, UT) Meet Lyla Jackson. She’s a well-spoken 10-year-old superstar with a cause.
“We need insulin to be affordable. People are rationing their insulin. And their dying from that and that isn’t okay;” she told me.
Lyla is one of 40,000 Americans diagnosed each year with Type 1 Diabetes, also known as insulin-dependent or juvenile diabetes.
The medical costs that families dealing with Type 1, or T1, are startling. Lyla’s Mom, Sue, filled me in; “We have excellent insurance, but we still pay about $6000 a year out of pocket. If we didn’t have insurance we’d be closer to $35,000 per year in diabetic supplies.”
Lyla was a delegate representing the state of Utah in the JDRF Children’s Congress.
“The main reason we are there is to talk to Congress about the needs of those with Type 1 Diabetes. I got to talk to Senator Romney, Senator Lee and Representative Curtis”; she said.
Insulin affordability is one of the things she talked with them about.
The numbers are starting. Lyla explained; “By the time I was diagnosed it was $100 a vial. Over the past 8 years the price has quadrupled. The last time we looked, a vial of insulin. Maybe that big. It’s $450 dollars a vial. That’s a crazy amount.”
I’ve met before with Lyla as one of the first Utah Caring Stories. We went and visited with researchers at the University of Utah that are doing amazing work developing fast acting insulin from cone snails.
Lyla took that research message to Washington. “We need renewal of the special diabetes research fund Mitt Romney was very interested in stuff about the cone snails. I want to advocate for Type 1 diabetes. I know that if we keep advocating, one day we are going to have a cure.”
Lyla is a great example of a person with passion trying to make a difference. Who knows…years from now Lyla just might be doing more than just visiting Congress.
What was her passionate plea to Congress? “You don’t want a 10-year-old to come into your office and be able to explain to you why people that you are representing are dying. If I were them, I’d understand. I do understand.”
These stories deserve to be told. These are Utah Caring Stories. I’m Doug Jessop, ABC4 News.
To see more Utah Caring Stories and to nominate a person or group for Doug to profile, go to ABC4.com/Caring.