The Minnesota Legislature may have found a way forward on emergency insulin

A new Minnesota Senate bill aimed at helping diabetics who can’t afford insulin might actually break a months-long deadlock over the issue.

Advocates can be forgiven for skepticism; their hopes have been dashed multiple times since the campaign for the Alec Smith Emergency Insulin Act began in 2018. But a new effort, led by Chaska Republican Sen. Scott Jensen, received some good marks — along with some questions — from insulin advocates Thursday.

The bill, Senate File 3019, relies on insulin manufacturers to supply the hormone for diabetics who can’t afford it, using existing patient assistant programs to resupply pharmacists who provide both emergency and long-term supplies for patients deemed financially eligible. The bill was approved on a voice vote by the Senate Health and Human Services Committee Thursday.

Under the bill, someone with a valid prescription but who needs emergency insulin can go to a pharmacist and receive a 30-day supply at no charge. The maker of that insulin would reimburse or resupply the pharmacy, and the companies would have to provide insulin to patients who meet the financial eligibility rules via their patient assistance programs. For the longtime supply program, eligible patients would include those with no insurance or high-deductible insurance, and those not eligible for other subsidized plans (such as Medical Assistance or MinnesotaCare) who have income less than 400 percent of the federal poverty level.  

A small state appropriation, $250,000 or so this year, would pay for MNsure to provide navigator services to direct patients to patient assistance programs or other insurance plans. The bill requires the drug companies to create a public awareness campaign on their assistance programs.

Compared to another bill addressing the issue, House File 3100, that passed the House two weeks ago, the Jensen bill has no large fees on insulin makers for the emergency supplies nor does it use MNsure to administer the program and determine eligibility. Instead, it imposes fines on manufacturers who don’t cooperate with the program and creates a board to review complaints from patients who think they were improperly denied help through the patient assistance programs. “Every unit of insulin under this program will be provided by the manufacturers, no patient will fall through the cracks and there will be audits and accountability in place to assure that,” Jensen said.

The sizes of the fines have not been set, but Jensen said they would need to be steep to make sure insulin makers would take part in the program. The $100,000 fine in the bill now is a placeholder, he said. “We need to make sure the integrity of the program is maintained and that is done through the fines,” he said. 

Jensen said his conversations with the pharmaceutical companies have been positive. “The pharmaceutical manufacturers don’t like the bill, they may even today be opposing the bill,” he said. “But they will come along and they are saying yes to this. This is not something where we’ll have to say, ‘Oh my stars it’ll end up in court.’”

Lija Greenseid, an affordable insulin activist, listened to Jensen explain the new bill and described herself as “more optimistic than I have been. I’m feeling super good about this.”

Greenseid said she wants to see the size of the monetary penalties be “way, way bigger because otherwise they just won’t do it.” She also wants to keep out-of-pocket costs for patients as low as possible.

Nicole Smith-Holt, the mother of Alec Smith, whose 2017 death served as a catalyst to address the insulin affordability issue, expressed some optimism but said there are still details that need to be reconciled with the House bill. “I have spoken with Jensen and I feel like the bill will definitely pass out of the Senate and I think once the two parties meet for conference committee I think they can work together to put out a solid bill,” she said via email. “I think the Senate bill needs work but I think if they work with the advocates and the representatives that put together Alec’s Bill it can be done.”

“I need to learn more about the role of manufacturers and how this bill would practically work for patients.”

The industry did express opposition to the bill Thursday. Sharon Lamberton, deputy vice president for the drug manufacturers industry group PhRMA, said they have constitutional issues with the program as it’s set up in the bill.

“We acknowledge that our patient assistance program could work better,” Lambertson said. “We do have incredible programs that are offering patients the assistance they need. This bill does acknowledge these programs and create a more comprehensive education and awareness about these programs.

“The majority of our concerns would be around clarifying any constitutional issues we have,” she said. “We are concerned with how manufacturers would be compensated for the insulin product, which would be a takings clause of the 5th amendment concern.”

Nearly all insulin in the U.S. is manufactured by Lilly, Novo Nordisk, and Sanofi, and those companies provide around 95 percent of the hormone in Minnesota. All have existing patient assistance programs that would be used under the program envisioned by the Senate bill. PhRMA also has a program to direct patients to assistance programs.

Jensen, a medical doctor who said he diagnosed a patient Wednesday morning with diabetes and directed him to current patient assistance programs, said he understands that insulin advocates are wary of a bill that relies on drug company cooperation.

“There is a certain amount of suspicion and distrust of the pharmaceutical manufacturers so we need to have an accountability piece to this. Accountability is huge,” he said.

The patient assistance programs have been criticized for being confusing and for not helping as many people as advocates say need help. 

Jensen agreed. “We told the manufacturers, ‘Make ‘em better. If you don’t, there will be hell to pay,’” he said.

If the Senate passes the Jensen bill, something he said could happen by next week, the House and Senate would need to create a conference committee to work out differences between the two versions. Jensen said he talked with Nicole Smith-Holt, Alec Smith’s mother, as well as lead House sponsor Howard and Gov. Tim Walz and said they expressed optimism that the issue was moving toward resolution.

Correction: This story was changed to note that the drug companies, not MNSure, will be responsible for a public awareness campaign on the program created by the bill.