The nationwide movement to lower insulin costs might be reaching a fever pitch, but for advocate Quinn Nystrom, its successes are little more than moral victories in the face of what she sees as legislative stonewalling down in St. Paul.

Nystrom spoke with the Dispatch during a phone interview Tuesday, July 9 -- just one of four interviews that day, she added, another day juggling full-time activism with a full-time job and treating a chronic, incurable disease.

The media coverage has certainly been there -- an eight-minute profile by CBS, sit-downs with PBS Newshour, write-ups in the St. Paul Pioneer Press, The Washington Post and on STATnews.com in recent weeks. That’s likely to intensify as presidential candidate Sen. Bernie Sanders announced Thursday, July 11, he will travel with a caravan of Americans, including Nystrom, to Canada later this month as they purchase cheaper insulin. This will be the group’s third trip across the border.

But despite the attention, the tangible milestones, the changes enacted into law or reflected in the prescription price tag aren’t there, she said.

Insulin, an enzymic medication diabetics -- particularly Type 1 diabetics -- need on a daily basis to live, has stirred national discourse in recent years, both as a story unto itself, as well as a microcosm of the United States' costly and often dysfunctional health care system. Between 1996-2018, insulin prices rose by 1,200%, while production costs remained static, according to a study by the Harvard Medical Review. Prices doubled between 2012-16 alone.

This session, lawmakers shopped a bill to establish emergency insulin reserves for diabetics across the state -- the 2019 Alec Smith Emergency Insulin Act, named after a 26-year-old Minneapolis man who lost his health insurance and succumbed to his condition in 2017 when he tried to ration the life-sustaining medication.

However, despite widespread bipartisan support, the Alec Smith act failed to be included in the final health and human services omnibus bill. This was the result of a miscue, state Sen. Michelle Benson, R-Ham Lake, said at the time, describing it as a clerical error.

Nystrom didn’t buy it.

“I don’t believe there has been a miscommunication in the (Minnesota) Legislature,” Nystrom said. “By state statute, GOP staff could have fixed that error. The governor has said he’ll sign that bill tomorrow if it’s on his desk. So what is it worth? Is it people or pharmaceutical companies? I don’t believe a clerical error should have gotten in the way of human life.”

Nystrom said she has taken issue with Republican state senators who derided her criticisms as a matter of political gamesmanship. Nystrom is a self-described Democrat and has stood as a DFL candidate in a past local election, but she dismissed that characterization, because skyrocketing insulin prices aren’t “... a partisan issue, it’s a life or death issue.”

Nystrom alleges Novo Nordisk -- one of the largest insulin manufacturers in the world -- made a concerted effort to derail bipartisan legislation in session, hiring lobbyists and spending large sums of money in March to persuade members of the GOP to kill the bill.

For his part, Senate Majority Leader Paul Gazelka, R-Nisswa, denounced that description of events, noting while he touched base with representatives of the pharmaceutical industry, he did not recollect any specific discussions regarding insulin, nor pressure to stall any legislation.

Paul Gazelka
Paul Gazelka

“I don’t know what ‘House of Cards’ things that these people do, frankly,” Nystrom said. “But all I know is that during that 11th hour, that the Senate cited a clerical error, which I believe is complete b.s.

“I go back and look at the pharma lobbying dollars put in, and also the pharma lobbying funds put in to reelect the Senate Republican leadership,” Nystrom added. “Now, call it a coincidence, but I have a hard time believing that didn’t influence the decision. I would like for them to go to special session and pass this bill and save Minnesotan lives, but there’s been no talk of that.”

Speculating that political opponents might be using the Alec Smith Emergency Insulin Act as a disingenuous ploy, Gazelka noted it can take years for legislation to pass the finish line in some cases. Even emotionally charged or divisive bills, such as those pertaining to preventing traffic fatalities, can fail at the end of session, just to overwhelmingly pass the following year.

“This is a serious issue that needs to be addressed and we are addressing,” Gazelka said during a phone interview Friday, July 12. “Quinn Nystrom has never been an elected legislator. She doesn’t know all that goes on end of session. We have taken significant steps in this last session and will continue to take more steps related to insulin and all other life-saving drugs.”

Gazelka pointed to provisions in the health and human services omnibus bill that stipulates pharmacies provide emergency access to insulin and other life-saving drugs, as well as other provisions intended to decrease prices via pressure on the pharmaceutical industry and restrictions on the health insurance industry.

As for the Alec Smith Emergency Insulin Act, Gazelka said the main negotiators -- Minnesota House Speaker Melissa Hortman, Gov. Tim Walz and himself -- only received it after negotiations for the health and human services bill were concluded. Walz has stated on the record he would sign the Alec Smith bill immediately if Senate Republicans passed it to his desk.

“We just wanted to get it done,” said Gazelka, who noted the HHS bill was hashed out and debated far longer than other omnibus bills on the floor. “We weren’t taking any other issues at that time. There’s almost always more work to be done.”

While unlikely to be addressed in special session this year, Gazelka said he expects the Alec Smith Emergency Insulin Act -- or compatible legislation to establish emergency insulin reserves at pharmacies and clinics -- to pass in the 2020 legislative session starting Feb. 11, 2020.

Nystrom said the issue can’t wait -- not when one out of four diabetics are rationing life-sustaining drugs and people are dying.

“This is a human rights issue. There’s no reason I should go to London, Ontario and pick up a vial of Novolog for $26 and come here to CVS and pick up that same vial for $340,” said Nystrom, who noted she will actively campaign for pro-insulin affordability candidates in next year’s elections. “Diabetics are some of the most resilient people I know. I will not let a defeat from Sen. Gazelka stop me. I will come back stronger. Make no mistake, we will be back at the state Capitol next year, stronger than ever.”

Gazelka said Nystrom has not contacted his office to speak with him, but added the door is always open to her and that he is open to an extended conversation on the matter. Nystrom provided a copy of her phone records showing two phone calls to Gazelka's St. Paul office on May 23 and May 24. The first call's duration was one minute and the second call's duration was three minutes. In a phone interview Saturday, July 13, Nystrom said she left a message for Gazelka on the first call in May and talked to an assistant in his office on the second call seeking to set up a meeting on the subject, but said she never received a call back. Nystrom said she still wants to sit down and talk with Gazelka in person and is just waiting for the call back to set up a meeting.

Editor's note: This story was updated to include Quinn Nystrom's response to a comment by Sen. Paul Gazelka that she had not contacted his office to speak to him.