In June 2019, Lija Greenseid handed Minnesota Gov. Tim Walz an empty vial of insulin that her 13-year-old daughter had painted gold.

Greenseid’s daughter has Type 1 diabetes, which means she requires daily injections of manufactured insulin to stay alive. The price of a single vial of insulin rose by about 1,200% between 1996 and 2018, and the gold vial was a reminder, Greenseid said, that this lifesaving pharmaceutical shouldn’t be as expensive as precious metal.

“What I heard is that that gold vial remained on his desk at the governor’s office, and he brought it up throughout that summer and fall when he was trying to talk to legislators to get them moving,” Greenseid said.

Ten months later, in April 2020, Walz signed the Alec Smith Insulin Affordability Act. The law was named after the 26-year-old Minnesotan whose 2017 death from rationing insulin became a catalyst for the patient advocates who turned the high cost of insulin in the U.S. into a national political priority.

Now it’s an issue in the presidential campaign. Both former President Donald Trump and Vice President Kamala Harris and her running mate, Walz, have sought to appeal to the nation’s 8.4 million insulin users and their families by touting policies that make insulin cheaper for some patients.

But advocates for diabetes patients fret that neither presidential candidate would go as far as Walz’s Minnesota law, which helps patients even if they are uninsured, despite the law being under legal attack by the drug industry.

The landscape on insulin pricing has already changed significantly in the past five years. One month after Walz signed the Minnesota law, the Trump administration announced a voluntary program for Medicare prescription drug plans to cap copayments for some insulin products at $35. Two years later, President Joe Biden signed a law requiring all Medicare drug plans to cap copayments for insulin at $35 a month.

Now, amid the current presidential campaign, Harris has proposed extending that $35 cap on insulin copayments to Americans with commercial health insurance.

The Trump campaign’s national press secretary, Karoline Leavitt, touted his efforts on prescription drug prices when he was in the White House, including approval of a pathway for prescription drugs to be imported from Canada as well as the voluntary $35 insulin Medicare copayment cap. But she did not offer new insulin-specific initiatives for his possible second stint as president.

“President Trump will finish what he started in his first term,” Leavitt wrote in a statement.

Copayment caps, which have been enacted by 25 states, are popular policies because they provide an immediate financial benefit that many patients see at the pharmacy, according to University of Southern California economist Neeraj Sood. They’re also relatively easy to implement.

But copayment caps don’t address the high list price of insulin itself, so uninsured patients don’t benefit from such rules. About 1 in 12 Americans lacked health insurance last year.

That’s what makes Minnesota’s insulin safety net different. The system has two parts: an emergency program that allows individuals to get a one-time, 30-day supply of insulin for $35, and a continuing need program that provides insulin to eligible patients for a year at no more than $50 for a 90-day supply.

By contrast, list prices for a 30-day supply of insulin can easily top $215, depending on the insulin.

The bill that created Minnesota’s program was bipartisan out of necessity. Republicans controlled the state Senate at the time, while the Minnesota Democratic-Farmer-Labor Party held the House and governor’s office.

Nicole Smith-Holt, whose son the bill was named after, watched in tears as it finally passed the state legislature in 2020.

“I was happy. I was relieved,” Smith-Holt said. “I was sad that it took Alec dying to get to the point where people could walk into the pharmacy and pick up their prescription for an affordable price.”

But because Minnesota’s program requires insulin manufacturers to provide the insulin, it has prompted a backlash from manufacturers. Pharmaceutical industry lobbying group PhRMA filed a lawsuit in 2020 to block the Minnesota law, arguing it violates the “takings clause” of the U.S. Constitution, which says private property can’t be taken for public use “without just compensation.”

That suit is ongoing, yet the state program is up and running and by the end of 2023 it had been used over 1,500 times.

PhRMA spokesperson Reid Porter said his group is committed to helping patients afford medicines. Insulin makers voluntarily dropped list prices last year and now offer patient assistance programs for affording the drugs. And the CEO of insulin maker Eli Lilly first proposed the voluntary Medicare copay cap Trump announced in 2020.

Porter said insulin costs have been driven up by insurance companies and pharmacy benefit managers, also known as PBMs — the middlemen between insurance plans or employers and drug manufacturers — when they pocket the discounts from the list price of drugs that they negotiate with manufacturers.

“Minnesota’s insulin program does not solve this problem and is unconstitutional,” Porter said. “This is not how the system should work, and why it’s critical that policymakers should prioritize reforming the PBM system, a solution that puts patient health over politics.”

In 2021, Sood co-authored a study that found that, despite insulin list prices rising between 2014 and 2018, income received by drugmakers decreased while increasing for intermediaries like PBMs and pharmacies.

In September, the Federal Trade Commission announced a lawsuit against the nation’s three biggest PBMs, alleging they created a system that inflated insulin prices. The companies denied the claims.

Jing Luo, a physician at the University of Pittsburgh, said that regardless of who wins in November he doesn’t expect existing insulin policies like Medicare’s popular copay cap to be rolled back, due in part to the advocacy of people like Smith-Holt and Greenseid.

“They’ve been really effective at tying high insulin prices with really bad, morally repugnant outcomes,” Luo said.

The key in Minnesota was including real stories, Greenseid said.

“We had enough real people who reached out and had conversations and helped to show politicians the extent of the problem,” Greenseid said, “and they listened.”

By Bram Sable-Smith
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.