When Minnesota passed a law this spring to make insulin more affordable for its residents, advocates in other states like Connecticut saw it as a victory.
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“For a lot of people in Connecticut, we were looking towards this bill as a way to say, we need a similar way forward,” said Kristen Whitney Daniels, chapter leader of Connecticut #Insulin4All. “It has the potential to help so many diabetics who are uninsured, people who have lost their insurance, which is incredibly important during this pandemic, people who are underinsured.”
The Alec Smith Insulin Affordability Act took effect July 1 but is now facing a lawsuit from a pharmaceutical trade organization. Local lawmakers and advocates are considering what this means for Connecticut’s efforts to pass similar legislation to limit the costs of insulin, which have doubled in recent years.
“It’s horrible that this lawsuit is going through,” Daniels said. “But we hope that this will bring awareness that the insulin manufacturers are not on the patients’ side.”
The Minnesota law is named after Alec Smith, who depended on insulin medication. But after aging out of his parents’ insurance coverage at 26 years old, Smith began dangerously rationing insulin that he could no longer afford.
He died in 2017. His parents, Nicole Smith-Holt and James Holt Jr., have spearheaded legislative efforts.
Daniels, who has Type 1 diabetes and has previously rationed her medication, said this is an all-too-common story among people managing this lifelong chronic disease.
One in four patients with Type 1 or 2 diabetes has reported using less insulin due to high costs, according to survey results published in the Journal of American Medical Association by Yale researchers.
“Sometimes when I see stories like this, it reminds me again how close my story could have become the Smith-Holt family’s story,” Daniels said. “That legacy would have been left with my mom.”
The Minnesota law requires drugmakers to provide an emergency 30-day supply of insulin to patients at little to no cost. It also set up an income-based program for people who struggle affording diabetes management.
Pharmaceutical companies are required to participate under threat of fines. The trade group claimed in its lawsuit that “because the act takes private property for public use without paying just compensation, it is unconstitutional.”
Connecticut lawmakers and advocates introduced legislation in February that would cap insulin at $50 for a month’s supply and expand access to emergency refills.
The bill didn’t get a vote in the General Assembly during the regular legislative session due to the pandemic, but Rep. Sean Scanlon wants it included in an upcoming special session this month.
“It has unfortunately become so astronomically expensive for people in Connecticut that they’re really hurting,” he said. “And especially when you combine what just happened with coronavirus, with the economic crisis that’s happened … we just can’t afford to wait to do this bill much longer.”
Sen. Matt Lesser, another sponsor of the bill, said he’s confident the state could pass a law to cap insulin co-pays this year -- the piece of legislation had bipartisan support coming out of the state Insurance and Real Estate committee.
He said Minnesota’s experience could serve as a model on how to get that done, as well as provide guidance on how to handle any pushback from drug manufacturers on policies that get at insulin pricing.
“We’re happy to partner with [manufacturers] if they’re willing to address these affordability issues in Connecticut, but if they stand in the way, we’re prepared to stand up to them,” Lesser said. “It’s more important than any company’s bottom line.”
