State lawmakers around the country are following Colorado’s lead in filing legislation that would place a cap on monthly insulin copays for diabetics.
An Illinois bill (S.B. 667) creating a copay cap for insulin is currently awaiting the signature of Gov. J.B. Pritzker (D), who has said he will sign it. Legislatures in at least eight other states have already drafted insulin copay price-cap bills to be considered in the 2020 session.
Lawmakers in another six states are writing insulin copay bills that have not yet been finalized, according to diabetes advocacy groups that track state legislative activity.
The bills are a state-level response both to a stalemate in Congress over efforts to rein in pharmaceutical costs and a growing awareness that insulin prices have surged dramatically in the past decade or more, putting the health of millions of diabetics at risk.
The cost of insulin tripled between 2002 and 2013, and about 25% of insulin-dependent diabetics have at some point rationed their supply in response to the high cost, according to the American Diabetes Association.
States where insulin copay bills have been filed include Florida (H.B. 109, S.B. 116) , Massachusetts (S. 2409), Michigan (H.B. 4701), New Jersey (A. 5786), New York (S. 6492, A. 8292), Ohio (H.B. 387, S.B. 232), Pennsylvania (H.B. 1873), and Wisconsin (A.B. 411, S.B. 340).
States where lawmakers are working on bills include Hawaii, New Hampshire, Oklahoma, Texas, Virginia, and West Virginia, according to T1International, an advocacy group for people with Type 1 diabetes, virtually all of whom need daily insulin shots to survive.
Around 30 million people in the U.S. have diabetes, and about 7.4 million of them are dependent on insulin, the ADA says.
Most of the bills that have been filed so far follow the model of the Colorado law that was enacted in May, which caps monthly copays for insulin at $100, regardless of the amount needed by a given patient.
But at least one state is more ambitious. The bill introduced by Massachusetts Sen. Cindy Friedman (D) would cap copays at $25 per month and also would create a mechanism for the state to begin monitoring the cost of other drugs considered essential to the public health.
Friedman told Bloomberg Law that she thinks $100 per month is too high for insulin-dependent diabetics, especially for patients who use more than one drug, each subject to a separate copay.
“I would have made it $10 per month, but my staff wouldn’t let me,” she said. “But there’s certainly no moral universe, or economic universe, in which the price of insulin should be what it is now.”
Wisconsin Sen. Dave Hansen (D) filed his insulin copay bill after hearing horror stories from people around the state who were being forced to ration their insulin supply because of the cost.
“I’ve heard from people who’ve been paying up to $1,300 per month,” Hansen told Bloomberg Law. “It’s clear we had to do something, and the Colorado example shows that there’s something for the states to do.”
S.B. 340 also would cap the monthly copay for insulin at $100, he said.
Insulin is a “poster child” high-cost drug for the states to target because the price has increased so rapidly in recent years and because it is a daily necessity for insulin-dependent diabetics, Friedman said.
“There are many other drugs that come to mind that are crucial for public health that you could imagine taking a similar approach to,” she said. She mentioned as examples the Epinephrin auto-injectors, used to combat several allergic reactions, and Albuterol inhalers, used for people with asthma.
Her bill would create a four-year test of copay price caps, allowing policy makers to evaluate the impact on drug prices and health insurance premiums, with a view to extending the approach to other drugs, she said.
But states’ regulatory authority only applies to the private insurance market, which leads some advocates for diabetics to view insulin price-cap legislation with only mild enthusiasm. Their laws cover large and small employer group plans that aren’t self-funded and private insurance underwritten by the state, including Obamacare plans. That’s about “30% or less” of the relevant population, depending on the state, according to Allison Bailey, U.S. advocacy manager for T1International.
States are powerless to help those covered by Medicare and other federal health-care programs, self-funded health plans regulated by the Employee Retirement Income Security Act that are generally offered by employers. Medicaid, a joint federal-state program, is also outside of state regulators’ jurisdiction.
The insulin copay caps also do nothing for uninsured people, who often face the full list price for insulin, which is much higher than the price negotiated by health plans for the drug.
“These bills really take aim at the insurance companies, by focusing on copays,” Bailey said. “But we’d like to see legislation that holds the drugmakers accountable, with price caps as opposed to just copay caps. That would offer real relief for the uninsured.”
A spokesman for the Pharmaceutical Research and Manufacturers of America, a trade group for drugmakers, wasn’t available for comment.