Minnesota Legislature passes emergency insulin bill after 'long and arduous road'

Minnesotans with diabetes will have a source for low-cost emergency insulin starting this July, as legislators completed a yearlong push Tuesday that pitted activists against drugmakers and cleaved state leaders along party lines.

"I don't know that words can really explain what it's like to have a loved one's name attached to a bill that provides a legacy, that's going to save the lives of others," said Nicole Smith-Holt, whose son's death prompted the legislation.

Alec Smith, a diabetic, died in his Minneapolis apartment in 2017 after rationing his insulin. His death launched a crusade among diabetics and their families, who pressed for aid at the Capitol as the cost of insulin spiked.

Lawmakers on both sides of the aisle took up the cause last year, saying fast action was needed to prevent further deaths. But deal-making crept along in fits and starts as politicians clashed over who was eligible, how to pay for the program and how to distribute the drugs.

After more than a year of public hearings and news conferences, the final version of the insulin bill came together behind closed doors. Legislators reached a compromise in private talks as the COVID-19 crisis dominated discussions at the Capitol. The Senate passed it unanimously hours after it cleared the House 111-22. Gov. Tim Walz, who has been calling on legislators to reach a compromise since the summer, is expected to sign it into law Wednesday.

Smith-Holt and her husband, James Holt, watched from the House and Senate galleries Tuesday. Rep. Mike Howard, DFL-Richfield, credited them and "the countless Minnesotans" who came to the Capitol to lobby for passage of the bill, named the "Alec Smith Insulin Affordability Act."

The battle over insulin affordability has spread across the nation. Congress and legislatures in other states have examined ways to rein in the drug's cost for years. It became a campaign trail issue for some Democratic presidential candidates pushing for prescription drug affordability. Sen. Bernie Sanders traveled with diabetes activists to Canada to secure cheaper insulin, and Sen. Amy Klobuchar highlighted Alec Smith's story in the speech launching her presidential campaign.

The debate in the Minnesota Legislature was "a true saga" and a "long and arduous road," said Sen. Scott Jensen, R-Chaska. "We were politicking. We had this perspective and they had that perspective. This was a win today for Minnesota. People said, 'No, we're not going to let the political bickering and gridlock stop this crucial initiative.' "

Safety net

The measure will provide a safety net for the roughly 10.5% of Minnesotans — more than 466,000 people — who have diabetes, according to American Diabetes Association estimates.

Diabetics can get a 30-day supply of insulin if they meet certain requirements. The bill also mandates that manufacturers offer continuing patient assistance programs, which are more restrictive. Families or individuals are only eligible if they earn less than 400% of federal poverty guidelines, or $104,800 for a family of four.

People can only qualify for emergency insulin once a year.

Applicants must fill out a form and provide a valid prescription and valid form of identification, such as a driver's license or state ID card. The identification was a sticking point for some Democrats such as Rep. Tina Liebling, DFL-Rochester, who said it would prevent a child from getting the drug if their parents are immigrants in the country illegally. She still voted for the bill.

But the primary dispute was whether insulin manufacturers Eli Lilly, Novo Nordisk and Sanofi should cover the program cost. While activists pushed for a state insulin program, the three drugmakers also made their case, tripling their spending on lobbying in Minnesota from 2018 to 2019.

Democrats argued they should pay fees totaling up to an estimated $38 million in the program's first year. Some Republicans suggested the state instead use its health care access fund for the program. Legislators ultimately agreed to have the companies supply insulin for the program at no cost or reimburse pharmacies that provide it. Manufacturers will be fined if they don't.

The industry group PhRMA and some Republican legislators warned that making drug companies provide free insulin could be unconstitutional. Minority Leader Kurt Daudt, R-Crown, who voted against the bill Tuesday, said drugmakers already have programs to help people and the bill is unnecessary.

"Manufacturers have existing assistance programs that have helped tens of thousands of patients find help affording their insulin every month," PhRMA public affairs director Nick McGee said via e-mail Tuesday. " … This proposal unfortunately ignores these existing programs and raises a lot of questions about how it will be implemented."

But Rep. Howard noted that since work began on the bill, another man with diabetes died because he couldn't afford the drug.

"There have been powerful money and special interests that would like to see the status quo continue, and for this bill to be stopped in its tracks," Howard said. "But what those special interests didn't count on was ordinary Minnesotans driven by love."

Jessie Van Berkel • 651-925-5044

Stephen Montemayor • 651-925-5048