The heartbreak arrived at 5:30 a.m. Saturday, through a phone call from her state representative.
Nicole Smith-Holt had been hopeful up until the final hours of the legislative special session that there would be enough support at the Capitol to pass an emergency insulin program this year that had been inspired in part by the death of her son.
But what had seemed like almost a sure thing instead was lost in the confusion of 11th-hour budget negotiations, potential clerical oversights, contradictory accounts from lawmakers and, ultimately, industry opposition.
Smith-Holt had spent at least two hours a day fighting for a bill intended to save the lives of diabetics like her son, Alec Smith, who died because the cost of insulin forced him to ration his medication. Smith-Holt, who has become a national figure in the battle against spiking insulin costs, said the effort to create a safety net for people in her home state is not over.
“We’re not going to back down on this,” she said.
Lawmakers on both sides of the aisle are ready to take up the issue again. Senate Majority Leader Paul Gazelka, R-Nisswa, said he expects to return to the measure in the next legislative session, which begins Feb. 11. A spokesman for Democratic Gov. Tim Walz said he would sign it into law.
So why did the bill, which had bipartisan support, fail to pass this year? Some legislators said they had concerns about the program’s logistics, while others were worried about the funding source. But the proposal’s fate was ultimately decided in complex end-of-session negotiations that happened outside the public eye.
Rep. Tina Liebling, the House DFL chairwoman for the health and human services committee, said that during one of the final negotiating sessions she asked her Senate counterpart, Republican Sen. Michelle Benson, whether the insulin provision was going to end up in the final version of the massive health and human services bill.
“It was very clear she made a decision not to do it,” Liebling said.
Benson called Liebling’s accusation “disingenuous.” She pointed to a clerical error, saying fees involved with the insulin program had been left off a spreadsheet detailing the health and human services bill’s financial provisions.
The measure would have charged drug manufacturers a fee and used the money to pay for emergency insulin assistance. The state would implement and manage the program, and pharmacies would volunteer to dispense the medication to people who meet certain qualifications.
“Some things take a little bit of time, because we want to make sure they’re right,” Gazelka said when the insulin plan was proposed as an amendment on the Senate floor during the special session. He asked people not to support the amendment.
Benson and Gazelka also both noted on the floor that drugmaker Eli Lilly is now selling one of its insulin products at half price, or $137.35 a vial.
“It doesn’t take away the pain of the loss of Alec’s family, but it does help us understand that maybe somebody is listening,” Benson said.
Insulin manufacturers already have programs to help patients get discounted or free medication in certain circumstances, PhRMA spokesman Nick McGee said. The proposed legislation did not account for existing programs and “would have instead diverted resources to a state-run program with little detail of how it would be implemented or benefit patients,” he said in a statement.
McGee and some legislators said that the bill was too narrowly focused, and the state needs to more broadly address how the health care costs are being shifted to patients.
“Shouldn’t we think bigger?” Sen. Scott Jensen, a Republican and doctor from Chaska.
He said Type 1 diabetes is just one life-threatening condition where the state needs to ensure residents are protected. People with asthma, epilepsy and allergies requiring EpiPens are all dealing with rising costs, he said.
House Majority Leader Ryan Winkler, DFL-Golden Valley, supports the insulin program but echoed Jensen’s point.
“Insulin is important, but it’s important for a discrete group of people. So how do you tell a story about a much broader industry? I don’t know,” he said.
When the insulin issue comes up next year, Winkler said the question will be whether manufacturers have to pay for a solution.
“There is a sense that the industry has been a bad actor,” he said, but some Republican legislators don’t want to assess fees on drugmakers.
Senate Republicans and House Minority Leader Kurt Daudt, R-Crown, both told House Democrats they did not want the insulin bill to pass, Winkler said.
First-time Rep. Mike Howard, DFL-Richfield, said his frustration over the outcome of the insulin measure has not subsided. Howard said there was never a “substantive reason” given for why the bill failed. He sponsored the measure and placed a photo of Alec Smith on his desk in the House chambers on his first day there. He described the call to Smith-Holt on Saturday morning as the most painful moment of his first year in office.
The bill was rooted in the grassroots advocacy and stories of people like Smith-Holt and her husband James Holt Jr., “That will be the strength to move this forward next session as well,” Howard said.
Smith-Holt has not paused her work. At 5:30 p.m. Wednesday, she was at the Capitol for a meeting of the task force Attorney General Keith Ellison convened to work on an action plan for lowering pharmaceutical drug prices. Later in the evening, she was headed to a meeting with members of the group MNinsulin4all, a local chapter of an international advocacy movement.
Their goal in the weeks ahead, she said, is to zero in on lawmakers who voted against the Alec Smith Emergency Insulin Act. She plans to change their minds.