Alec Raeshawn Smith was on his parents' health insurance plan until he turned 26 last spring.
Smith had aged out of it, and he became uninsured. He tried rationing his insulin medication, because, as his mother later told the Star Tribune, he couldn't afford his own insurance and couldn't cover the $1,300 insulin refill. He didn't tell anyone of his struggle, the newspaper reported.
A little more than a month after his birthday, Smith died alone in his apartment. In lieu of flowers, family members asked that donations be given to the Juvenile Diabetes Research Foundation. An obituary said he had been studying to become a paramedic.
An autopsy showed Smith died of diabetic ketoacidosis because he was without his medication, KARE reported.
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Now, his mother, Nicole Smith-Holt, is calling for lower insulin costs. She also told Minnesota Public Radio she wants to see laws holding pharmaceutical companies accountable.
Facebook photos showed Smith-Holt at a May 12 rally outside the Minnesota State Capitol, where she shared her son's story.
"It's heartbreaking. I should be with my son. I should not have had to bury him at such a young age. No parent should have to bury their children," Smith-Holt told KARE in an interview.
According to the American Diabetes Association, an estimated 7.5 million Americans depend on insulin. Citing 2016 research from the University of Melbourne, the organization said the average price of insulin almost tripled from 2002 to 2013.
"The rising cost of and access to insulin ultimately impacts everyone and especially people with diabetes and their families, health care providers, insurers and employers," the American Diabetes Association said in a statement. "Current estimates project that diabetes is the most expensive chronic illness in the U.S. at a total of more than $327 billion per year, including $15 billion for insulin."
Eli Lilly and Co., a global manufacturer of prescription drugs, told the Star Tribune they agreed drugs like insulin medication should be made accessible to all, but pushed back in placing the blame on manufacturers for rising drug prices.
"The price of insulin has gone up over 1,200 percent in 20 years," Smith-Holt told the newspaper. “It’s not affordable. You’re price-gouging people who need this one product to live, to survive."