Minnesota passed Alec’s Law in 2020, three years after 26-year-old Alec Smith aged out of his parents’ health insurance and died as a result of being unable to afford his insulin, which cost $1,300 a month. The original sponsor of the bill, Rep. Michael Howard (DFL-Richfield), is seeking to protect and expand Alec’s Law through House File 4484, which he introduced last week.
Nicole Smith-Holt, Alec’s mom and charity ambassador for T1International—a grassroots organization that focuses on ensuring everyone who needs insulin has it—testified in support of Howard’s new bill.
“My son should not have died because he did not have $1,300 in his bank account, and our healthcare system is set up to make it more difficult for people to access affordable medications. The pharmaceutical industries—they have done a lot, but it’s only because we are outraged, and there’s no law in place to prevent them next month from saying, ‘No more patient assistance programs.’ We need this law in place so that next month, next year, there is a safety net so we are not burying more people because they can’t afford what keeps them alive.”
— Smith-Holt
Alec’s Law has two primary components: an emergency insulin program that allows individuals to access a one to two month supply of insulin at a pharmacy for $35, and a long-term program in which individuals can be matched with patient assistance programs from insulin manufacturers (Eli Lilly, Novo Nordisk, or Sanofi) to access insulin for up to 12 months. Since it was enacted, over 2,000 Minnesotans have used Alec’s Law to obtain insulin.
“This is literally a lifesaving law here in Minnesota and, as I mentioned, other states are looking to make progress on the same very issue,” Howard said. “In the law we passed, we said, ‘Let’s do some reporting. Let’s understand the utilization of this program, and come back in a few years to assess whether there’s still a need for the long-term program.’”
The Board of Pharmacy completed reports about the program, and decided it must continue, as there is a continuous need for the long-term patient assistance program, Howard said.
“While more Minnesotans are using the emergency program, we are still seeing that Minnesotans are benefitting from the long-term program, which again, can be lifesaving and budget-stabilizing for families when they need it most.”
— Howard
The law’s long-term patient assistance program puts insulin manufacturers on the hook for payments, not the patients or the state, Howard said. Smith-Holt said people living with diabetes who are in need of insulin but can’t afford it contact her regularly.
“It’s still unaffordable, no matter what the pharmaceutical industry will lead you to believe with their creation of patient assistance programs,” Smith-Holt said. “People are still struggling. People are still unable to access those patient assistance programs that [manufacturers] claim they have set up, altered, and made more easily available to people. There’s still barriers in place.”
Rep. Anne Neu Brindley (R-Chisago) said the state enacted the insulin safety net bill after insulin manufacturers implemented their own financial assistance programs. She asked for examples of diabetics having access issues to patient assistance programs, and asked why people are still paying thousands of dollars for their medicine.
“These programs are all available, so why is that still happening?” Neu Brindley asked.
Howard said he has heard repeatedly from advocates that these programs are not accessible; that patients either get denied by the program or have to wait on hold for long periods of time during phone calls requesting access.
“When you talk to Minnesotans who have experienced these programs, they were left with the impression that they were sort of designed to be complicated. Under our law, folks get connected with a navigator—a MNSure navigator who can help navigate some of these processes,” Howard said.
Neu Brindley was concerned about the removal of navigators, since funding for these positions was not reflected in the bill’s amendment. A MNSure representative said the navigators will still be utilized under the bill, and said there are extra funds available from Alec’s Law they wish to use on the initiative, rather than simply asking for more funding. The amendment would create flexibility for MNSure to use funds for navigator positions.
“I remain frustrated that we are doing something that makes us feel good that insurance companies are already doing. They’ve already capped all insulin—manufacturers are doing it,” Neu Brindley said. “It feels, once again, like this legislation makes us feel good, but it’s probably not necessary.”
Smith-Holt said many members of the Minnesota Insulin4All chapter are uninsured or underinsured, and struggle to afford insulin on a daily basis. She said she’s received donations of insulin from diabetics who have died, and keeps the medication in her fridge to pay it forward so those who are on death’s door don’t die.
“Many people don’t have insurance, and those are the people that are falling through the cracks. Those are the people that are ending up in (the intensive care unit) in diabetic ketoacidosis (DKA), costing the state thousands of dollars to try to prevent their deaths, and treating their long-term health conditions as a result of what their body has gone through when they’ve gone into DKA from not having their insulin.”
— Smith-Holt
Rep. Steve Elkins (D-Bloomington) gave an example of why it’s difficult for diabetics to obtain low-cost versions of drugs like insulin.
“In cases where manufacturers are offering both a high price and a low price version of a brand drug, and in many cases, the plans through their PBMs (pharmacy benefit managers) are choosing the high-price drug because they want the rebates more than they want the lower prices for the patients,” Elkins said.
Elkins credited Alec’s Law for requiring insurance plans and PBMs to make low-cost versions of the drug available. HB 4484 was referred to the House Ways and Means Committee.