How did insulin become yet another partisan proxy war in Minnesota? 

Two legislative hearings this week raised that question (and a few others) as part of a dispute that has placed diabetics and their families in the middle of what is, in fact, a life-or-death issue: Insulin is needed to keep type 1 diabetics alive, but price increases have made it unaffordable to the under- and uninsured.

Yet even lobbying from diabetics and their families, especially from Nicole Smith-Holt and James Holt Jr., who lost their son Alec in 2017, hasn’t been enough to shake free a plan to help the most desperate patients. 

At the center of the impasse is another question: who should pay the relatively small cost of an emergency insulin plan, taxpayers or insulin manufacturers?

It was a question that was once thought to be resolved. Near the end of the 2019 legislative session, Republicans in the Minnesota Senate approved language that would, as the DFL-controlled House had already done, assess a fee on the pharmaceutical industry to pay for an emergency insulin plan. But the agreement somehow fell away during the end-of-session, behind-closed-doors negotiations, and the blame-casting began almost immediately afterward. Even an informal bipartisan work group, which also met in private, couldn’t get around the funding impasse.

That’s why a plan recently proposed by Senate Republicans looked like it could be a breakthrough. Diabetics earning less than 400 percent of the federal poverty level — about $50,000 for an individual — could apply for the program. Once the patient’s financial eligibility was approved through MNsure, doctors would be able to order the patient a 120-day supply of insulin from the manufacturer, which would be expected to fill it without charge. Such help could last up to a year.

The same application process would steer those eligible for subsidized health insurance — either through Medicaid or the MNsure exchange — to plans that would replace the insulin program. 

“I think the hope is that if we connect people to their supply before they’re in crisis, before they start rationing it, we will save lives,” said Sen. Eric Pratt, R-Prior Lake, the proposal’s prime sponsor. “A parent should never have to bury their child.”

Two bills that ‘go hand-in-hand’

But some patients worried that the Republican plan didn’t go far enough. “This is a good start but it doesn’t erase my fears and I, along with the rest of the diabetic community, needs something that does,” said Alexis Stanley, a Concordia University student with type 1 diabetes. 

Those patients would like to see a plan that matches a DFL plan, dubbed the Alec Smith Emergency Insulin Act, that would dispense insulin in emergency situations. Talk this week was whether the House and Senate could reach a compromise that would include elements of both sides’ plans.

“From my standpoint, these are two bills that will go hand in hand,” Smith-Holt said at a hearing of the Senate Health and Human Services Committee this week. “Alec’s bill will touch on the emergency situation, whereas the Pratt bill is more for once we get out of this emergency situation; it would be a secondary bill that would help.”

But that wouldn’t resolve the impasse over funding. Money would still be needed to set up the Alec Smith program and to reimburse drug stores that dispense insulin under its provisions. That means either a license fee or taxpayers dollars would be required, something Senate Republicans have resisted. Instead, GOP leaders prefer tapping funds from Minnesota’s health care provider tax, which they reluctantly agreed to reinstate at the end of the 2019 legislative session.

In a letter to the Senate committee, a representative of the pharmaceutical industry lobbying group PhRMA said the group opposed the Pratt funding plan. Yet Pratt said he has had conversations with the industry and didn’t expect pushback. Providing drugs to needy patients through coupons and other so-called Patient Assistance Programs is something drug companies already do. And the Pratt plan doesn’t create a new fee or tax on the industry, which has aggressively opposed such assessments. 

But the Republican proposal would require the drug companies to include more people in those current programs. Holt-Smith said Thursday that currently more than half of people living with diabetes who seek help from the companies are denied. 

Potential for compromise

Insulin is needed to regulate blood sugar levels in people with diabetes; without the hormone, type 1 diabetics can die, while type 2 diabetics can suffer severe health problems. Yet only three pharmaceutical companies make nearly all of the brand-name insulin sold in the United States — Eli Lilly, Novo Nordisk and Sanofi — and prices for the medicine have jumped 1,200 percent over the last 20 years, diabetics have told lawmakers. 

While there are expected to be non-brand-name suppliers soon, their products — known as biosimilars — are not yet available in Minnesota.

Rep. Mike Howard, DFL-Richfield, is the prime sponsor of the Alec Smith Act in the Minnesota House — Alec and his parents lived in his district. He said there is potential for a compromise in the Pratt plan but that there remain issues to resolve.

“At the end of last session, one of the stumbling blocks appeared to be who was going to pay for this program,” Howard said in an interview. “In the Senate proposal we see the Senate moving to the House position and agreeing with Minnesotans that those insulin manufacturers should bear the burden. They profited greatly and they should be responsible for paying for a program.”

While Howard said he preferred a fee on the drug makers, he said he was open to other mechanisms, such as the one included in Pratt’s bill. Even that, however, wouldn’t resolve how to pay for emergency insulin for diabetics who lacked money to pay for it. 

The latest plan from House DFLers would let a pharmacy dispense insulin immediately while a patient is applying for assistance. That emergency supply would be paid for by the state with revenue from a manufacturers fee, and the program would be managed by a pharmacy benefit manager contracted by the state. The DFL plan would also cover more people than the Senate proposal, in that would apply to those earning up to 600 percent of federal poverty level. 

Gov. Tim Walz has repeated that he would call a special session to address the issue — but only if a deal is struck that assesses drug makers for the cost.

Howard said this week he is open to some cost sharing. “It doesn’t make sense to be so rigid, that we’re not open to ideas,” he said. “As long as the insulin manufacturers are the key responsible funding entity, I’m open to some level of other resources being included.”

‘It hits people in the gut’

While Pratt said he too was open to talking about the details with task force members, he said the issue needed to get away from politics. “What I have been really upset with is the hyper-politicization of this issue,” he said. “Forgive me if I try to step away from some of that so I can try to work through it without the noise, the rhetoric, the attacks.” 

DFLers, however, are convinced that the political pressure brought by them and diabetes advocates is what caused the Senate GOP to move toward some form of industry funding. Being tied to the pharmaceutical industry remains political poison, and Republicans have been sensitive to accusations that they are uncaring about the issue — or in bed with Big Pharma. Neither presents good political optics, and Republicans’ efforts to call attention to drug supply changes already passed — or to the idea that the insulin program needed more work — weren’t enough to change them.

This week, GOP lawmakers have been distancing themselves from a controversial video by Rep. Jeremy Munson, a Republican from Lake Crystal who is a member of the four-person New Republican Caucus. In it, he says he purchased $25-per-vial insulin at Walmart and suggested diabetics in need had that option.

But diabetics and their physicians said that product is an older formulation of insulin that doesn’t work well for many diabetics. Thursday, Munson was criticised by both DFL Rep. Laurie Halverson of Eagan — herself a type 1 diabetic — and GOP Rep. Mary Franson of Alexandria.

“Don’t pretend to understand what we live with every single day and then legislate based on that,” Halverson said.

“We should not practice medicine as a Legislature,” said Franson. “And we should never mandate a product. That should be left between the doctor and the individual in the clinic room.”

Howard said earlier this week that he has heard complaints from some Republicans about the way the issue has been made political and emotional. But he said the politics are driven by the way the issue affects diabetics and their families.“It hits people in the gut,” he said. “That is what has raised the temperature of this issue and that is what have made people uncomfortable.”

He said he thinks the Senate is responding to political pressure brought by families. “That part has been necessary and will continue to be necessary to drive us toward getting something done,” Howard said.

The Pratt plan could blunt accusations and attacks. “I want to state that I’m grateful that the Senate Republicans have made this issue a priority for your caucus,” Lija Greenseid, whose daughter has type 1 diabetes, told the Senate committee. “I’ll be honest. We didn’t always feel last session that you were listening to us and consequently some of you were the victims of the ferocity that as mama bears we will show if someone isn’t doing enough to protect our kids. 

“While we might show our claws if we don’t think you’re with us, we’re also quick to embrace with bear hugs those who join us in this fight.”

At the end of a House hearing on the issue Thursday, Rep. Tina Liebling, DFL-Rochester, said there have been talks between House Speaker Melissa Hortman and Senate Majority Leader Paul Gazelka about appointing a joint committee of lawmakers “with decision-making authority” to see if an agreed-upon bill can be drafted. 

If that happens, a special session could still occur. The next regular session doesn’t begin until mid-February 2020.