Colorado’s new Prescription Drug Affordability Board has identified five costly medications used to treat autoimmune diseases, HIV and cystic fibrosis that could receive state-mandated price ceilings — but it’s not clear how that will affect patients.

The board was created by a 2021 law that allowed it to set a maximum price for up to 12 drugs each year, if a medication’s cost increased by more than 10% in one year, or if a brand-name drug cost more than $30,000 per year. It can also examine generic drugs that cost more than $100 per month.

The Colorado Health Institute estimated about 13% of Colorado adults who took prescription drugs in 2021 reported difficulty affording their medication. Unsurprisingly, people who were uninsured or had low incomes were more likely to report trouble paying for prescriptions.

The state’s prescription drug board had a list of hundreds of medications to consider for its first round of potential price caps. Its members recently announced they would oversee affordability assessments of five drugs:

• Genvoya, a combination pill for HIV, with a list price of about $4,000 per month

• Enbrel, used for rheumatoid arthritis and other autoimmune diseases, with a list price of more than $6,800 per month

• Cosentyx, used for psoriatic arthritis and other autoimmune diseases, with a list price of more than $6,900 per month at typical doses

• Stelara, used for Crohn’s disease and other autoimmune conditions, with a list price of more than $12,000 a month

• Trikafta, for cystic fibrosis, with a list price of more than $26,000 per month

The announcement kicks off a process of determining whether those drugs should be deemed “unaffordable,” with an answer likely coming in December or January, said Lila Cummings, prescription drug affordability director at the Colorado Division of Insurance. If the members do determine those drugs are unaffordable, they’ll take a separate vote on whether to set a maximum price for them, she said.

“An upper payment limit, even if a drug is deemed unaffordable, may not be the right tool,” she said. “The goal is increasing affordability, increasing access.”

If the board were to set a price ceiling, that would apply to both the patient and any insurance provider. For example, if the limit was $1,000 per month, how much of that the patient paid would depend on whether they have insurance and what they have to pay out-of-pocket before coverage kicks in. The limit wouldn’t automatically apply to plans that aren’t state-regulated, though they could opt in, Cummings said.

Most people wouldn’t see any effects from the limit until 2025.

When assessing affordability, the board is required to consider whether there are equivalent drugs available, and how much they cost; information about the cost to produce the drugs and the prices they sell for; how many people use the drug; and how much the average patient pays out-of-pocket, among other factors.

The Pharmaceutical Research and Manufacturers of America released a statement objecting to the five-member board for not including any patients or people who work in the drug industry. It also would create unnecessary complications when the federal government is also making changes to the marketplace, the statement said.

“After spending roughly $2 million to get started, the (Prescription Drug Affordability Board) is using flawed data and unelected bureaucrats to decide which medicines are available and how much they’ll cost patients,” it said.

While patients and people working in the industry aren’t on the board itself, they are members of an advisory council that guides the board’s decisions, Cummings said.

Colorado Insurance Commissioner Michael Conway said manufacturers should support making drugs more affordable, which would allow more patients to buy them. Parts of the health care industry have raised alarms about access every time there’s a significant policy change, and they’ve consistently been wrong, he said.

“It’s wildly inappropriate for them to be threatening people’s access to health care,” he said.

Patient advocacy groups had mixed reactions to the board choosing drugs used for the diseases they focus on.

Mary Dwight, chief policy and advocacy officer at the Cystic Fibrosis Foundation, said Trikafta is one of only a handful of drugs that target the malfunctioning gene that causes the disease. While it’s not a cure, people who take it have needed fewer hospitalizations and are less likely to need a lung transplant. Life expectancy is increasing and more people are meeting goals like getting a job or starting a family because of the new drugs and other improvements in care, she said.

“They really are helping rewrite the story of CF for those who can access it,” she said.

The question is whether a price ceiling would help or harm access, Dwight said.

It’s possible drugmakers will simply refuse to sell in Colorado, but it’s also possible that if the price is lower, insurance companies won’t be so aggressive in trying to limit how many patients use Trikafta, she said.

“Patients are getting caught in the middle,” she said.

The Arthritis Foundation said it intends to be involved in the process of assessing the drugs for autoimmune diseases. Patients often struggle to pay for biologic drugs to treat their conditions, but it’s important that the board not set the price at a level that interferes with access, it said in a statement.

“Now more than ever, it is critical that the patient experience is front and center in the affordability review process — and we continue to welcome the opportunity to partner with (the Prescription Drug Affordability Board) to incorporate meaningful patient perspective into their deliberations,” the statement said.

Hope Stonner, policy coordinator at the Colorado Consumer Health Initiative, said that price ceilings could be particularly important for people who are uninsured, or whose coverage requires substantial out-of-pocket spending.

“Eyes are definitely on Colorado to see how this process is working and what the outcomes are going to be,” she said.

Stonner said she’s not sure if pharmaceutical companies would actually stop selling their drugs in Colorado if they don’t like the maximum prices, or if that’s just a threat meant to influence the board. The members did choose widely used drugs, which makes it less likely that companies will want to give up that revenue entirely, she said.

“We’re talking about an industry that makes trillions of dollars each year and is incentivized to keep making that money,” she said.

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