On June 1, 2017, Alec Smith had just turned 26 years old and had to move off of his mom’s insurance plan. He also had type 1 diabetes, and between the unaffordable health insurance options on the market and rising insulin costs, he decided to ration out his remaining medication. Within 27 days, he died of an insulin deficiency.
“I was absolutely stunned,” Smith’s mother, Nicole Smith-Holt, 47, tells PEOPLE. “I would’ve never predicted that that’s what would have taken his life.”
Now, Smith-Holt is fighting to make sure this doesn’t happen again to people in need of the life-saving medication, and she’s starting by sharing her son’s story.
As Smith neared his 26th birthday, they knew he would need a new health care plan. He was a manager at a local restaurant in their hometown of Richfield, Minn., which meant his salary was too high to qualify for Medicaid, but not enough where he could always afford his insulin.
“We were forced to go to the marketplace to look for private insurance,” Smith-Holt explains. “What we were coming up with was a huge range of prices, but when we were looking at something that would let him see his same physicians and his same endocrinologist, that plan was running about $450 a month, with a $7,600 deductible.”
“I thought it was absolutely ridiculous, I don’t know how anybody affords it,” she adds. “For a single person to reach that $7,600 deductible — if they didn’t have a chronic illness they’d never hit that. They’d be constantly paying 100 percent. It’s like not having insurance at all.”
They decided that it wasn’t worth paying the $450 a month for insurance, only to then pay the $1,300 or so for his insulin supplies each month until he hit the deductible.
“He decided that he would just hold off on purchasing the insurance and pay out of pocket for his insulin supplies while he searched for a new job, a better job, hopefully with benefits so he would have employer-paid health insurance.” Smith-Holt says.
But unbeknownst to his friends or family, Smith couldn’t afford even a month of his insulin, and decided to start rationing out his injections.
“We found out that he had gone to the pharmacy about a week before his paycheck was coming, and when he found out how much it was going to be he didn’t have enough money in the bank, so we felt that he was stretching it to last until the next paycheck,” his mom says.
And on June 27, Smith was found dead in his apartment.
“I think for the first two months I was completely shutdown — I couldn’t really function at all. Just dealing with his death in the first place, and such a senseless, needless death threw our whole family for quite a loop,” Smith-Holt says.
Now, nearly a year after his death, Smith-Holt is working with Minnesota lawmakers on a bill that would set up an emergency supply of insulin for people in need.
“It was named after Alec, the Alec Smith Emergency Insulin Act. It would be free or on a sliding-fee scale, depending on the income, for people without insurance because of a loss of a job, or aging out of their parents’ health care coverage,” she says.
She also wants to see federal legislation that would place regulations on pharmaceutical companies and stop them from raising prices.
“We want laws in place to prevent pharmaceutical companies from randomly raising prices, and pushing people to make such horrible decisions on how they can afford life-saving medication,” Smith-Holt says. “Type 1 diabetics need daily injections, so we would like transparency, we would like to see list prices go down and laws in place to prevent big pharma from price-gouging people.”
That, she hopes, will be Smith’s legacy.
“I want to make a change so that nobody has to die this way,” Smith-Holt says. “We want insulin to be accessible to every diabetic.”