'We need protection': Minnesota mom pleads with lawmakers to cap insulin costs

ST. PAUL, Minn. (FOX 9) - A Richfield mother says her son died because he couldn’t afford his insulin, and she’s asking state lawmakers to help her take on drug companies over the issue.

Nicole Smith-Holt shared her family’s story with lawmakers Tuesday as a photo of her son, Alec, sat in front of her. Smith-Holt said Alec Smith died in 2017 of diabetic ketoacidosis. He was 26 years old, off his parents’ health insurance, and could not pay the $1,300 monthly bill for his diabetes supplies.

“Hopefully by sharing Alec’s story, it compels people to also fight,” Smith-Holt said in an interview after an emotional roundtable discussion.

DFL state Sen. Matt Little said he has drafted nine bills dealing with insulin prices for the upcoming legislative session that starts in January. One of them would cap the price of insulin, he said. But other lawmakers said they anticipated a fight from the pharmaceutical companies over the proposals.

The price of insulin has skyrocketed over the past 20 years. Published reports indicate that some insulin products cost 10 times what they did in the late 1990s. 

“I think the easiest and most direct way to control the cost is to control the cost,” said Little, DFL-Lakeville. “(Advocates) should expect something on insulin to pass. They should expect a whole host of things to pass here. That’s our job.”

A handful of senators – mostly Democrats and one Republican – said the drug companies’ actions amounted to price gauging and should be considered a crime. This fall, Minnesota Attorney General Lori Swanson agreed, suing some pharmaceutical companies in a pending case.

“I can’t imagine a jury that would find them innocent of doing the wrong thing. They are clearly guilty,” said state Sen. Jim Abeler, R-Anoka.

Another participant in the roundtable, Lija Greenseid of St. Paul, said the insulin pens for her daughter cost $140 in Minnesota and between $8 and $14 in six other countries her family has visited. 

She held up the different pens for lawmakers to see, and said they are effectively the same product.

“Why is it so hard for us here in the United States to get access to a medication that keeps people alive?” she said.

Eli Lilly and Company, which makes insulin under the Humalog brand name, blamed the prices on people’s high-deductible health insurance that requires consumers to pay thousands of dollars out of pocket. The company has taken steps to lower the cost of insulin, said Greg Kueterman, a spokesman.

“In August, we opened the Lilly Diabetes Solution Center, which provides point-of-sale discounts, insulin donations to free clinics, and access to insulin for people who have immediate needs. We already are helping up to 10,000 people each month access insulin at lower prices,” he said in a statement, adding that people using Lilly insulin should call a hotline at (833) 808-1234.

In the statement, Lilly did not take a position on proposed price caps. But some Minnesota lawmakers said drug manufacturers hold powerful sway in St. Paul, and predicted that they will fight any changes.

“They work these hallways each and every day to stop this from happening,” said state Sen. Jeff Hayden, DFL-Minneapolis. “We’ve got proposals that have been around here since before I was here. We just lack the courage and the will to do it.”

Parents and others affected by insulin prices will need to fight, Smith-Holt said.

“We just need protection,” she said.