ST. PAUL -- A group of Minnesota citizens with diabetes made an eleventh-hour plea on Monday, May 13, for lawmakers to address the rising costs of insulin.

During a news conference at the state Capitol, the women urged lawmakers to unite behind a proposal that would give people with diabetes an emergency supply of insulin if they cannot afford it. The “Alec Smith Emergency Insulin Act” provision is wrapped into the House and Senate health and human services bills, but the versions are slightly different.

Those who have high-deductible insurance plans could get an emergency refill under the House bill, but not the Senate version. And the House bill would provide an emergency supply of 90 days, as opposed to the Senate proposal of 30 days.

“If I go even a couple of hours without insulin, I run the risk of diabetic ketoacidosis,” said Abigail Hansmeyer from New Brighton, who has Type 1 diabetes. A vial of insulin cost her $20 when she was diagnosed with diabetes in 1996, she said. Now, that vial costs her $240 — and she needs two to three of them per month.

“Our lives have a price tag, and we either pay the price or we die,” Hansmeyer said.

The cost of insulin has become a hot-button issue across the nation as the average price of the drug has nearly tripled in the past decade. The price hikes have not gone unnoticed in Minnesota, where more than 300,000 adults have been diagnosed with diabetes.

Crossing borders for cheaper meds

Hansmeyer was flanked by several other women, three of whom had just gone on a “caravan to Canada” to buy cheaper insulin.

St. Paul resident Lija Greenseid, whose 13-year-old daughter has diabetes, organized the trek. The group found that insulin was 10 times cheaper across the Canadian border than in the U.S.

“Our group spent a total of $1,265 on insulin at the Canadian pharmacy. If we had paid retail cost here in the United States, it would have been over $12,000 for the same insulin,” Greenseid said. “As a mom, I will do whatever it takes to make sure that my daughter has what she needs to stay alive.”

Quinn Nystrom, who has Type 1 diabetes and who is on a high-deductible plan, also went on the trip. She said that people with diabetes are forced to find cheaper ways to get the drug that keeps them alive, even if it means turning to the black market.

“We’re shipping it to each other, we’re showing up in parking lots and swapping with strangers. I know it sounds terrible, but this is the reality of the United States of America,” Nystrom said. “Here’s the great news: The Minnesota Senate and House has the opportunity to change that for Minnesotans.”

The women called on lawmakers to pass the House version of the emergency insulin act, noting that the Senate plan would exclude patients like themselves who have high-deductible plans. They also said the longer emergency supply of 90 days would give people with diabetes time to apply for patient assistance programs.

“So by allowing that 90 days, it assures that we give that person a larger time frame to secure … a more permanent solution to the problem,” said Nicole Smith-Holt, whose son Alec was the impetus behind the emergency refill bill.

Alec Smith was 26 years old when he died last year from diabetic ketoacidosis, a serious condition that can be prevented with insulin. He was trying to stretch out his remaining insulin until his next paycheck.

Will budget stalemate kill momentum?

Sen. Matt Little, DFL-Lakeville, said he is “very worried” that the proposal could get locked up in the state budget stalemate. He is one of the authors of the Senate emergency refill bill.

“I think anybody that’s got any policy wrapped up in an omnibus bill should be worried right now,” he said.

Little added that he has thought about removing the emergency insulin proposal from the health and human services bill and pushing it as a standalone policy. He said he thinks it would have enough support in the Senate; it was added as an amendment to the larger health and human services bill with unanimous support.