How Colorado’s insulin cap law evolved
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In May 2019, Colorado became the first state to pass legislation aimed at lowering the out-of-pocket cost of insulin for people with diabetes.
The law mandated an out-of-pocket cap of $100 for a 30-day supply of insulin for Colorado residents. Kelly Ciesco, BSN, RN, adult clinic registered nurse educator at the Barbara Davis Center for Diabetes, University of Colorado Anschutz Medical Campus, said Colorado’s cap was seen as a huge relief. She had observed many people with diabetes who were struggling to afford insulin prior to the cap.
“It was definitely a stressful time for patients who ran into issues,” Ciesco told Endocrine Today. “Whether they had commercial insurance, no insurance, Medicare or Medicaid, it seemed to be this overwhelming, stressful ordeal that took up everyone’s time. There’s no substitute for insulin, and people were being forced to pay hundreds and thousands of dollars for insulin. It’s not an optional thing, you can’t go without insulin.”
Since taking effect in January 2020, the Colorado insulin cap has expanded. After gaps and loopholes in the 2019 statute were discovered, legislators worked to get a revised insulin cap law approved in 2021 that included more precise language and an expanded affordability program.
“We chose to update our insulin affordability program with HB21-1307 after we learned that the 2019 bill allowed certain individuals to fall through the cracks,” Colorado Democratic state Sen. Dylan Roberts, lead sponsor of both bills, told Endocrine Today. “The 2019 bill [HB19-126] required carriers that provide coverage for prescription insulin to cap copays at $100, which was effective for many but did exclude individuals without insurance coverage and those on limited employee-sponsored plans. After hearing that members of our community were still struggling with outlandish insulin pricing, we came back to the table.”
Gaps in the original insulin cap
There was a lot of rejoicing when Colorado’s first insulin law took effect in January 2020, but there were also a lot of questions, according to Satish K. Garg, MD, professor of medicine and pediatrics at the Barbara Davis Center for Diabetes, University of Colorado Anschutz Medical Campus. One was how the law would affect people with diabetes who had multiple insulin prescriptions.
“People were not sure if it was related to all insulins,” Garg told Endocrine Today. “People with type 1 diabetes and many people with type 2 diabetes might be taking both basal and prandial insulin. It wasn’t very clear.”
The 2019 law stated that health insurance carriers were required to “cap the total amount that a covered person is required to pay for a covered prescription drug at an amount not to exceed $100 per 30-day supply of insulin, regardless of the amount or type of insulin needed to fill the covered person’s prescription.” This led some people with diabetes who used multiple types of insulin to pay up to $100 out-of-pocket for each insulin prescription rather than a maximum of $100 per month for all of their prescriptions.
Also, the first law did not protect all people with diabetes. Residents without insurance or those with some self-funded insurance plans were exempted from the cap, forcing them to potentially pay more. That issue was the catalyst for a revised law in 2021.
Refining the insulin cap
The second law, HB21-1307, which went into effect on Jan. 1, 2022, addressed some of the oversights of the 2019 law by clarifying that a person with diabetes should be required to pay no more than $100 for “all covered prescription insulin drugs” for the person’s “entire 30-day supply, regardless of the amount or type of insulin or the number of prescriptions.”
Another change was the creation of an insulin affordability program that included people with a valid insulin prescription who were not “enrolled in prescription drug coverage that limits the total amount of cost-sharing that the enrollee is required to pay for a 30-day supply of insulin.” The new program was established to support people with diabetes who were not covered by the initial insulin cap and allows eligible residents to receive a 12-month supply of insulin for a $50 copay per month. Additionally, eligible residents who have an emergency need for insulin and less than a 7-day supply available can pay a $35 copay to receive a 30-day supply. The emergency insulin supply can be used once in a 12-month period.
Ciesco said the new law was praised by providers at the Barbara Davis Center for Diabetes. However, she said it has taken a lot of effort to educate patients on the change.
“I feel like [awareness] has been the main obstacle in this,” Ciesco said. “It’s very new, and a lot of people don’t know about the insulin prices being capped. We get people who say, ‘I paid $1,700 for insulin.’ We explain to them that you don’t have to pay that much for insulin, and they’re so relieved. But then, at the same time, we have to instruct them how to get insulin the right way, and how to use these resources to their advantage, which can be kind of challenging at times.”
Garg said providers have taken time to learn about the state’s affordability programs as well as programs and coupons offered by manufacturers to get the out-of-pocket cost down as low as possible.
“[The manufacturers] have coupons so that patients can get insulin for $35, so you can even eliminate going through your copay,” Garg said. “Sometimes copays might be higher than what you can get insulin for. So some people are bypassing [copays].”
Ciesco and Garg agreed that people with diabetes in Colorado are better off than they were in 2019. Colorado was the first of 22 states in the U.S. to pass some form of insulin cap and Roberts said he believes that the momentum might lead to a nationwide cap for all people with diabetes down the road.
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