One of the scariest days for Elijah Hastings will be his 26th birthday, when treatment for his Type 1 diabetes will no longer be covered by his parents’ health insurance.
“I’ve read about people who just got off their parents’ insurance and they die because they can’t cover it (the cost of care),” the 15-year-old Collierville High School sophomore said.
“Young people who can’t afford the insurance to cover their insulin supply either water it down or buy it off the black market,” said Sherrie Rinehart, executive director of the West Tennessee chapter of JDRF (formerly Juvenile Diabetes Research Foundation).
Hastings has been living with Type 1 diabetes (T1D), an insulin-affecting autoimmune disease, since he was 7.
He wanted to follow in the footsteps of his father, Brad Hastings, and join the U.S. Army.
“When I found out I had diabetes, they said I couldn’t join the Army,” he said. “I was heartbroken pretty much. That’s the one thing I knew I wanted to do. It was going to be my job.”
Now, Hastings isn’t sure what he wants to do for a living, but he knows it has to pay well.
He’s tried video game programming, but found it too tedious. Now, he’s exploring career options that will pay at least $60,000 or jobs that have good health care benefits.
“You always want your kid to do whatever they want to do,” Hastings’ mother, Jocelyn Hastings, said, “but for him it’s, ‘You should do that, but you also need to find it in the corporate world where you’ll have good insurance and can afford it.’”
Elijah Hastings is one of more than 50 delegates, ages 5-17, traveling to Washington, D.C., this summer to represent JDRF as part of an advocacy effort held every two years.
At this year’s JDRF Children’s Congress, July 8-10, Hastings and those delegates from six countries will help members of Congress understand what living with T1D is like and why it is vital to fund research for life-changing therapies until a cure is found.
“The whole purpose of it is to bring awareness of diabetes research to our elected officials,” Rinehart said. “Funding is critical to us eventually living in a world without diabetes.”
JDRF’s top legislative priority is renewing the Special Diabetes Program, which provides $150 million annually for T1D research at the National Institutes of Health. The program expires on Sept. 30, 2019, unless it is funded again.
Created by Congress in 1997, the Special Diabetes Program is advancing research to prevent, treat and ultimately cure T1D. It also helps address the tremendous personal and financial burden of T1D, Rinehart said.
“I want to talk about insurance and how I want it to not be as restricted on what you can get,” Hastings said. “With insurance you can only get this meter or this pump and I feel like insurance should cover everything – all your insulin.”
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Health insurance coverage is also a legislative priority for JDRF. The West Tennessee chapter recently learned of a member whose insurance company would only cover a specific insulin pump brand.
“Insurance seems to not have a complete understanding of the importance of diabetes management tools,” Rinehart said. “It is a very personal regimen. Some individuals love having the continuous glucose monitor and pump, others would prefer to do shots.”
Hastings wears an insulin pump system and a continuous glucose monitor. He knows the brands by name. He prefers Omnipod because he doesn’t get tangled up or unplugged when he sleeps at night.
Jocelyn Hastings is a fan of Dexcom’s continuous glucose monitoring system, which delivers real-time data to her smartphone and alerts her if her son’s blood sugar gets too low.
“When he’s asleep at night, it will alarm me if his blood sugar is low and he needs to eat or drink, or if it’s high and he needs to correct his blood sugar,” she said.
She believes similar technology would have saved the life of her mother, Jane Davis, had it been more readily available 10 years ago when she died from T1D complications at age 57. Davis was diagnosed at 18 years old.
“Most parents can relax when their kids go to bed, but it’s the scariest time of day for us. If he’s up and awake we can see if he’s low or high,” Jocelyn Hastings said. “I don’t know how much sleep we lose.”
Before Dexcom, Hastings would get up and check her son’s blood sugar levels several times a night.
The sensors cost the family about $100 each with insurance, and last for about seven days.
Elijah Hastings isn’t only concerned about his own health. He hopes his advocacy efforts in Washington this summer have an impact felt around the world.
“My endocrinologist, she has family in Venezuela, and was saying it’s $85 to get one vial of Humalog (insulin) and their average salary a month is $10,” he said. “If we change here (in America) in a good way, hopefully it will change everywhere else.”
The JDRF West Tennessee chapter includes four counties in North Mississippi and Crittenden County, Arkansas.