Diabetes advocates call for action as emergency insulin funding debate continues

Many had told their stories at the State Capitol before: Parents worried about supplying diabetic children with medication; a woman who travels to Canada to buy insulin; the mother of Alec Smith, whose son died after rationing the drug.

Others shared their loss or struggles to legislators for the first time Wednesday at a Capitol roundtable. One man told how 47 days ago, 21-year-old Jesimya David Scherer-Radcliff died because he, too, rationed his insulin. Another woman described debilitating side effects she endures using $25 insulin from Walmart, because the alternative is $300 a vial.

They all urged lawmakers to create an emergency insulin program. But between their painful stories, a bipartisan group of state lawmakers continued to disagree about how to pay for the program.

Legislators and diabetes advocates gathered Wednesday to discuss the emergency assistance proposal. The group of Democrats and Republicans have been huddling regularly over the summer and presented a plan to dispense insulin and administer the program. They also offered a set of parameters for who would be eligible and how pharmacies would participate.

But they have not sorted out whether insulin manufacturers should pay the full program cost, as Democrats have proposed, or if they should follow the Republican suggestion of having the state fund it — or some mix of the two.

Sen. Jim Abeler, R-Anoka, said if he were king, the pharmaceutical industry would pay for the whole program. But Abeler said in reality he is worried drug companies would sue the state and drag out the process. Rep. Mike Howard, DFL-Richfield, said the lawsuit argument is "the talking point from Big Pharma."

Nick McGee, public affairs director for the trade association PhRMA, noted drugmakers like Novo Nordisk and Eli Lilly already offer programs to help people afford their insulin. He emphasized the need for broader health care reforms instead.

The debate over how to fund an emergency insulin program previously played out in the final days of the past legislative session, when the effort ultimately failed. Gov. Tim Walz has said he would call a special session to pass the insulin program, but wants legislators to reach a deal first.

Lawmakers in the bipartisan insulin work group said they need hearings on the bill to get to that point.

On Tuesday, members of Senate committees focused on health and human services gathered to examine recent issues at the Department of Human Services (DHS). It was the first in a series of meetings the GOP-dominated Senate has scheduled outside of the regular session to look into the state agency. At the end of this week's gathering, two senators pressed committee Chairwoman Michelle Benson, R-Ham Lake, to also consider the emergency insulin program at a future hearing.

"It's definitely ready," said Sen. Melissa Wiklund, DFL-Bloomington. And Sen. Scott Jensen, R-Chaska, said a hearing would get stakeholders involved and help determine whether DHS should administer the program.

Benson said that when she sees a proposal they can figure out what a hearing would look like and the right people to bring in. She also questioned the proposed DHS involvement with the program.

"I wonder if they can handle it at this point in time. I think there's a different way to get to the answers you are looking for," Benson said.

The proposal is ready to review, Howard said, calling her DHS comment "another in a long list of excuses."

Quinn Nystrom, a Type 1 diabetic who has been a frequent advocate at the Capitol, put it in stark terms Wednesday. She said people would continue to die and the state cannot wait until the Legislature reconvenes next winter.

"We are begging them to call a special session," she said. "Stop the bickering and just say, 'Let's just get this done.' This isn't a red or a blue issue, it is a life or death issue. And it can't wait until next February."

Jessie Van Berkel • 651-925-5044