Ahead of the legislative session, state lawmakers are exploring proposals including creating an emergency supply of insulin and setting price controls on the drug.
At a roundtable discussion at the Capitol this week, several senators and two incoming representatives heard from diabetics and family members about their struggle to pay for insulin, which has more than tripled in cost since 2002. Panelists said they also struggled with insurance companies changing the kinds of insulin they cover mid-year, and pointed to lower costs in other countries. In response, lawmakers emphasized their intent to pass legislation this session addressing the cost of insulin, which over 300,000 Minnesotans depend on.
"I think for us to do nothing in the face of what we have known for some time would be just wrong," said Sen. Jim Abeler, the lone Republican at the meeting.
Sen. Matt Little, DFL-Lakeville, hosted the discussion and said he has drafted several bills aimed at curbing the costs. While he is still determining which ideas to focus on in 2019, he said he was optimistic about gaining bipartisan support.
"I just felt good about what the legislative members said and how committed they are to finding a solution," he said. "We need to do something drastic, and that's really what I'm taking from the testimony."
After hearing from those at the panel, he said establishing an emergency supply of insulin seemed most important to him.
"We absolutely need some sort of access to an emergency supply for people that aren't able to afford the next dose," he said.
The idea was first introduced in this year's legislative session. Rep. Erin Murphy, DFL-St. Paul, authored a bill that would allow the state to buy insulin in bulk and make it available as an emergency supply for free or at low cost. The bill received an informational hearing but did not advance further.
Murphy named her bill after Alec Holt, who died in 2017 after trying to ration his insulin.
Holt's parents, Nicole Smith-Holt and James Holt, Jr., were at the roundtable. They told lawmakers that their son couldn't afford the $1,300 bill for his first insulin refill after aging off his parents' insurance, and began rationing the drug. Days before the paycheck he needed to afford his next dose, he died from diabetic ketoacidosis, a condition caused by lack of insulin.
"$300 could have saved his life," Smith-Holt said. "I strongly believe that every single individual in the United States has the right to affordable and accessible medications. I encourage you all to enforce legislation that reinforces these beliefs ... I believe Minnesota is in a position to make a name for ourselves."
Incoming Rep. Mike Howard, DFL-Richfield, said he plans to re-introduce Murphy's bill in 2019. He said that in his version, he wants to include a more defined funding mechanism - which could model the "penny-a-pill" legislation discussed in the 2018 session. The proposal would have charged pharmaceutical companies a fee for each opioid painkiller sold.
"We're looking at getting some sort of mechanism for the big pharmaceutical companies that are making millions of dollars to have some sort of accountability," he said.
Little said he and about a dozen other senators are also discussing ideas including: mandating that insulin manufacturers provide reasoning behind prices, tying the costs to specific factors, and barring insurance companies from changing the kinds of insulin or related diabetic equipment a policy covers.
Seven other states have passed laws requiring transparency on pricing for drugs including insulin, according to the National Academy for State Health Policy, a nonprofit that tracks and analyzes health policy.
Trish Riley, CEO of NASHP, said several states are considering price caps. A bill in Maryland passed in the House but not in the Senate this year.
"It's the next step after transparency. Once you know how the prices are established, then you can take action to limit what payers in the state will pay for it," she said. "It would be a significant step forward."