It's been 2 ½ years since Alec Smith died in his Minneapolis apartment as a result of insulin rationing, his mother said Thursday. And it's been 673 days since legislation prompted by his death was first introduced to help people with the drug's soaring cost, according to Minnesota House Speaker Melissa Hortman.
Diabetes advocates, Democratic legislators and Gov. Tim Walz gathered Thursday to present the latest version of a bill they plan to push during the legislative session that starts Feb. 11. The deaths of Minnesotans who could not afford insulin triggered several high-profile calls for action at the State Capitol in recent years. But legislative debates, followed by months of closed-door deal-making over the past year, have failed to produce an aid program.
DFL lawmakers said that they want to pass their bill, which they described as a compromise, early in the session. But proposals exchanged between Democrats and Republicans working behind the scenes paint a picture of entrenched differences.
Over the past couple of weeks, the two sides traded different outlines for an insulin affordability program. From eligibility rules to the process for getting emergency insulin — and most critically, the financial cost to manufacturers — the two sides' proposals remain far apart.
"How many more have to die before something gets done to reduce the skyrocketing price of insulin? How many more people are going to suffer long-term complications from rationing?" said Alec's mother, Nicole Smith-Holt, who has been a leading voice on the issue.
Democrats say they have added elements of GOP proposals into their latest offer. The new DFL plan would add a long-term program for insulin assistance and require aid applicants to show they are legal state residents. Both are GOP ideas.
Republicans have also made compromises, said Sen. Eric Pratt, R-Prior Lake. Their proposal initially focused on longer-term assistance, but they added an emergency element for people to get the drugs they need more quickly.
"To me, it feels like they're more interested in punishing manufacturers than making sure that people have access to affordable insulin," Pratt said.
Democrats would have drug manufacturers pay a fee to subsidize the program, and also would use $900,000 in state dollars to get it off the ground. Republicans would use state money to pay for the emergency program and require drug companies to supply insulin for their long-term program.
In a change from earlier proposals, both parties would require people seeking emergency insulin to cover a co-pay. The cost would be $75 for a 30-day supply in the GOP version and $30 for 30 days' worth in the DFL's bill.
At the end of the last session's budget negotiations, state leaders dropped a plan to help people get access to an affordable short-term supply of insulin. It was a harsh blow for diabetes advocates who had repeatedly highlighted how a monthlong supply of the drug they depend on to survive can cost hundreds of dollars — a price tag that has climbed astronomically in recent years.
Both Republican Senate Majority Leader Paul Gazelka, R-Nisswa, and Hortman, DFL-Brooklyn Park, said at the end of last session that they hoped a deal could be reached in the 2020 session.
In the meantime, a work group of senators, representatives and members of Walz's staff have tried to smooth out differences. Apart from one public hearing, efforts to reach a compromise have occurred in private since the last legislative session ended in May. The start of a new session will likely trigger a more public process, as lawmakers and advocates debate the legislation in committee meetings.
With negotiations taking place in the open, Walz said Democrats plan to leverage public opinion to try to get Republicans on board with their plan.
"I'm ashamed when we're standing with these advocates, when they tell you these numbers, how long they've been waiting," Walz said. "And I truly believe that we can get there. And I'm just telling you the manufacturers have to help us."
Jessie Van Berkel • 651-925-5044