ST. PAUL, Minn. (FOX 9) - Shortly after his 26th birthday, Alec Smith of Minneapolis was forced off his mother's health insurance. Less than a month later, he was found dead in his home.
“The official cause of death was diabetic ketoacidosis,” said Nicole Smith-Holt, Alec’s mother. “He was rationing his insulin to make it to pay day."
A Type 1 diabetic, Alec made too much money to qualify for assistance and yet not enough to afford insurance on the open market. The first time he went to get his prescription without insurance, the out-of-pocket cost was $1,300.
"He figured he would scrimp and save and do what he had to do until he could get a better job that had benefits," said Smith-Holt.
She is now lobbying state lawmakers to pass a bill that would set up an emergency fund for those in situations similar to her son’s case.
The Alec Smith Emergency Insulin Bill would set up an emergency fund which diabetes patients could access once a year. It would be managed by the Department of Human Services and funded through fees assessed to insulin manufacturers.
The bill is making its way through the House, but it is currently stalled in the Senate.
“These are bills that can save people’s lives and yet they sit there collecting dust," said Smith-Holt.
The bill was sent to Health and Human Services, but it has yet to be scheduled for a hearing. Committee chair Senator Michelle Benson, R-Ham Lake, could not be reached for comment Monday.
“It’s horrifying that people are dying and horrifying that the Legislature isn’t moving fast enough to solve this,” said Sen. Scott Jensen, R-Chaska.
Senator Jensen is the lone Republican author on the Senate version of the bill. So far, he has been unsuccessful in gaining support for the bill from his caucus.
"I think the pharmaceutical industry is powerful enough that when they flex their muscles, they make it difficult for things to move forward," said Jensen.
PhRMA, a pharmaceutical lobbying group, testified in a House committee hearing, calling the bill a “tax on insulin medicines.”
In a statement to Fox 9, PhRMA’s director of public affairs Nick Mcgee said, “Insulin manufacturers have robust patient assistance programs that can help patients get their medicine at a discount or even for free in certain circumstances. This bill does not account for those programs that already exist and would instead divert resources to a state-run program with little detail of how it would be implemented or benefit patients.”
Meanwhile, Smith-Holt says people will die waiting for a solution.
“They have the ability to charge whatever they want,” said Smith-Holt. “They say it’s what the market will bear, but people can’t bear to lose their life.”