Both Harris and Trump talk about the cost of insulin, but advocates say a law signed by Walz does more

In June 2019, Lija Greenseid presented Minnesota Governor Tim Walz with an empty insulin bottle that her 13-year-old daughter had painted gold.

Greenseid's daughter has type 1 diabetes, which means she needs daily injections of manufactured insulin to stay alive. The price of a single vial of insulin increased about 1,200% between 1996 and 2018, and the gold vial is a reminder, Greenseid said, that this life-saving pharmaceutical should not be as expensive as the precious metal.

“What I heard was that this vial of gold had been sitting on his desk in the governor's office, and he talked about it throughout the summer and fall as he tried to talking to lawmakers to move them forward,” Greenseid said.

Ten months later, in April 2020, Walz signed the Alec Smith Insulin Affordability Act. The law is named for a 26-year-old Minnesotan whose 2017 death from insulin rationing became a catalyst for patient advocates who made the high cost of insulin in the United States a national policy priority .

It is now an issue in the presidential campaign. Former President Donald Trump, along with Vice President Kamala Harris and his running mate Walz, sought to appeal to the nation's 8.4 million insulin users and their families by touting policies that make insulin less expensive for some patients.

But advocates for diabetes patients worry that neither presidential candidate will go as far as Minnesota's Walz Law, which helps patients even if they are uninsured, although the law is under attack from the pharmaceutical industry.

The insulin pricing landscape has already changed significantly over the past five years. A month after Walz signed the Minnesota law, the Trump administration announced a voluntary program for Medicare prescription drug plans to cap co-pays for certain insulin products at $35. Two years later, President Joe Biden signed a law requiring all Medicare drug plans to cap co-pays for insulin at $35 per month.

Now, in the midst of the ongoing presidential campaign, Harris has proposed extending that $35 cap on insulin copayments to Americans with commercial health insurance.

Trump campaign national press secretary Karoline Leavitt touted his efforts on prescription drug prices while in the White House, including approving a prescription drug importation pathway of Canada as well as the voluntary Medicare insulin co-pay cap of $35. But she has not proposed new insulin-specific initiatives for her possible second term as president.

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

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

But copay caps don't address the high list price of insulin itself, so uninsured patients don't benefit from these rules. About 1 in 12 Americans did not have health insurance last year.

This is what makes Minnesota’s insulin safety net different. The system includes two parts: an emergency program that allows individuals to obtain a one-time 30-day supply of insulin for $35, and an ongoing needs program that provides insulin to eligible patients for one year at a time. a maximum price of $50 for a period of $90. one day's supply.

In contrast, list prices for a 30-day supply of insulin can easily exceed $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 the governor's office.

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

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

But because Minnesota's program requires insulin manufacturers to supply the insulin, it has drawn backlash from manufacturers. Pharmaceutical industry lobbying group PhRMA filed a lawsuit in 2020 to block Minnesota's law, arguing that it violates the “takings clause” of the U.S. Constitution, which states that private property cannot be used for public use “without just compensation”.

That lawsuit is ongoing, but the state program is operational and by the end of 2023 it had been used more than 1,500 times.

PhRMA spokesman Reid Porter said his group is committed to helping patients obtain medications. Insulin manufacturers voluntarily lowered their list prices last year and now offer assistance programs for patients to afford their drugs. And the insulin maker's CEO, Eli Lilly, first proposed the voluntary Medicare co-pay cap announced by Trump 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 reductions on the list price of drugs that they negotiate with manufacturers.

“Minnesota’s insulin program does not address this problem and is unconstitutional,” Porter said. “This is not how the system should work, and that is why it is essential that policymakers prioritize reforming the PBM system, one that puts patient health before politics.”

In 2021, Sood co-authored a study that found that despite increases in insulin list prices between 2014 and 2018, revenues received by drugmakers declined while they increased for middlemen like PBMs and pharmacies.

In September, the Federal Trade Commission announced a lawsuit against the nation's three largest PBMs, alleging they created a system that inflated insulin prices. The companies have denied the allegations.

Jing Luo, a doctor at the University of Pittsburgh, said that whoever wins in November, he doesn't expect existing insulin policies, like Medicare's popular copay cap , be overturned, in part thanks to the advocacy of people like Smith-Holt and Greenseid.

“They have been very effective in linking high insulin prices to very bad and morally repugnant outcomes,” Luo said.

The key in Minnesota was to include real stories, Greenseid said.

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

KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the primary operating programs of KFF, the independent source for health policy research, polling and journalism.

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