What you need to know about the insulin debate at the Capitol

Jesimya Scherer-Radcliff’s family knew he hadn’t been feeling well, so they went to check on him.

The 21-year-old had Type 1 diabetes and was on his parent’s health insurance, but he still struggled to afford the insulin he needed. The family didn’t know it, but he had been rationing his supply of the drug. They found him dead in July.

“Jesy didn’t die from insulin rationing, he died from the prohibitive cost of insulin,” his godfather, Iain St. James, testified in an informal legislative hearing on the cost of insulin this week.

He’s the second high-profile casualty of the high price of insulin in Minnesota in recent years, even as state lawmakers continue to disagree about the details of a program that would provide emergency supplies to people in need.

“Access to a program like this would have saved his life,” St. James told lawmakers.

Here’s a breakdown of the issue, what happened at the Legislature earlier this year and what’s next:

Let’s step back: what’s the underlying issue that sparked all of this?

The price of insulin is increasing rapidly. Between 2012 and 2016, the average price roughly doubled from $234 a month to $450 a month, according to the Health Care Cost Institute.

People with Type 1 diabetes don’t produce insulin and need the drug to manage their blood sugar levels and stay healthy and alive, but the soaring prices have made it hard for many to afford the drug. Studies show one in four people with Type 1 diabetes ration their insulin supply.

That was the situation for Alec Smith, who was forced off his parent’s insurance in 2017 and couldn’t afford his $1,300 monthly insulin supplies because his salary was too high to qualify for assistance but too low to afford a good plan on the individual health insurance market. He rationed his supply and was found dead in his Minneapolis apartment at 26.

What’s the Legislature’s role in all of this?

After Smith’s death, his parents worked with state legislators to create the Alec Smith Emergency Insulin Act. The legislation established a way for people who can’t afford their insulin but don’t qualify for assistance, like Alec, to get at short-term supply in an emergency situation. In Minnesota, more than 440,000 people have either Type 1 or Type 2 diabetes, a number that grows each year.

What happened with the bill during the Legislative session?

A version of that bill was passed by both the Minnesota House and the Senate late last session, but it was taken out of the final state budget proposal during closed-door negotiations. The DFL-controlled House and Republican-led Senate disagreed on a number of things, including who should be eligible for the program and how it should be paid for. Both sides blamed the other for its failure.

Could they call a special session to pass it?

All of the top leaders in the Legislature and Gov. Tim Walz have said they’re open to coming back to St. Paul for one day this fall to pass an emergency insulin bill, and a handful of lawmakers from both parties and chambers met behind-the-scenes this summer to iron out their differences on the policy side of the proposal.

Their plan would allow anyone who has or recently had a prescription for insulin to go directly to their pharmacist to get a one-month supply in case of an emergency. The state would reimburse the pharmacist for the supply, and the individual could apply for an additional two-month supply if they meet certain qualifications. But lawmakers couldn’t strike a deal on how to pay for the program.

What’s the disagreement on funding?

House Democrats’ original proposal set up a fee for insulin manufacturers that would raise $10 million each year to cover the cost of the supplies and administering the program. They argue the companies that are profiting from the increased price of insulin should help pay for the new program, similar to the way legislators recently established a fee for opioid manufacturers to pay for state programs to battle overdoses.

Walz has also said he wants to sign a bill that puts drug companies on the hook to help cover the cost. Rep. Laurie Halverson, DFL-Eagan, said this week that lawmakers will drag the pharmaceutical companies to the table “kicking and screaming” if they have to.

But Republicans in the Senate have argued the program should be funded, at least in part, by the state budget. Sen. Jim Abeler, R-Anoka, said he wants pharmaceutical companies to contribute, but he’s worried they would sue and delay the start of the program. And Senate Health and Human Services Chairwoman Michelle Benson said this week that she’s worried about adding a new program to the Department of Human Services after a string of controversies and new leadership in the agency.

What do the pharmaceutical companies say?

They argue the state bill will duplicate existing programs offered by the pharmaceutical companies. Nick McGee, a spokesperson for PhRMA, said patients can already use programs including the Lilly Diabetes Solution Center, Novo Nordisk Inc. and Sanofi’s Insulins VALyou Savings Program to find savings for insulin.

In a recent op-ed, Stephen Ubl, a Minnesota native and president and CEO of PhRMA, places the blame for increasing insulin prices on deals negotiated by pharmacy benefit managers (PBMs) and insurers. PBMs negotiate in secret with drug manufacturers on behalf of the government and insurers, and the deals they strike determine the availability and prices of prescription drugs.

What about insurers?

Two Minnesota-based insurance companies recently announced plans to cap insulin costs starting in January of 2020. Anyone who gets insurance in Minnesota through Medica, either on individual market or through their employer, will see their out-of-pocket cost for a month’s prescription for insulin capped at $25. UCare also recently announced their members are eligible to have their monthly insulin expenses capped at $25.

What have other states done to address the issue?

In May, Colorado became the first state to cap the copay cost of insulin to $100 a month for insured residents, no matter how much they need or what it costs. It’s the first state to take such sweeping action on the issue.

What’s next?

It’s unclear whether lawmakers will manage to strike a deal ahead of the next legislative session, which convenes on Feb. 11, 2020. If not, advocates say they will be ready to push their agenda next year ahead of the November election, when all 201 legislative seats are on the ballot.

Minnesota Attorney General Keith Ellison is also in the midst of a federal lawsuit with three big producers of insulin accusing them of deceptively raising prices. A similar class action lawsuit is pending in New Jersey.