A board created to assess prescription drug affordability in Colorado would be barred from reviewing some high-cost medications for rare diseases under a bill moving forward in the Legislature.

Some patients fear that capping the prices of such drugs would drive manufacturers from the Colorado market and create scarcity for treatments to life-threatening diseases.

Senate Bill 26-140 cleared the Senate Health and Human Services Committee on Thursday on a 5-2 vote.

Senator Janice Marchman, a Loveland Democrat, said the bill came from conversations with parents of children who use the drug Trikafta to manage cystic fibrosis. The Prescription Drug Affordability Board considered whether to set an upper payment limit on the drug, which can cost upwards of $200,000 per year, in 2023.

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“These parents wanted to know one thing: ‘Is Colorado going to take my child’s medicine away?’” she told lawmakers. “This board was following the law as written, but they were getting closer to a decision that could have been catastrophic for families who had no alternative, no substitute and no Plan B.”

The board ultimately decided against setting a price cap after patients and advocates shared deep concerns that Vertex, the manufacturer, would stop selling Trikafta in Colorado as an unintended consequence. Discount and rebate programs also sharply reduce the average out-of-pocket costs for the drug.

Marchman is running the bill with Senator Lisa Frizell, a Castle Rock Republican. A similar bill in 2024 stalled and did not advance out of the Senate.

The Prescription Drug Affordability Board was created by the Legislature in 2021 with the authority to review drug costs for their affordability and ultimately set price caps. It set its first upper payment limit, a ceiling on how much an insurer or patient will have to pay, on the rheumatoid arthritis drug Enbrel last October. Consumer advocates celebrated that first-in-the-nation decision. Amgen, the manufacturer, sued over the decision, claiming it would cause significant financial damage.

SB-140 would exempt drugs for rare diseases designated by the Federal Drug Administration and drugs derived from plasma. Those are incredibly expensive to develop, and that is reflected in the price tag, but they can become the only treatment option for some patients. The actual price someone pays for the drug can fluctuate based on insurance coverage and manufacturer affordability programs.

“The drugs that exist for that 1 percent exist because someone made an extraordinary economic bet that they could develop a treatment for a disease affecting too few people for conventional pharmaceutical economics to work,” Marchman said. “Those bets are fragile and very expensive. They are made at the margins of viability. Every signal from the government that the return on rare disease investment will be arbitrarily capped makes the next bet less likely to be placed.”

“The drugs generating real PDAB action across states — Jardiance, Ozempic, Trulicity, Xtandi — have no orphan designations,” Marchman said. They’re not impacted by this bill.”

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Pharmaceutical companies are supportive of the bill, as are groups including the Colorado Rare Disease Coalition, Colorado Sickle Cell Association and Lupus Colorado.

Kristy Kibler, the CEO Lupus Colorado, told lawmakers she worries what price ceilings mean for providers like rural pharmacies and infusion centers. She said she has heard from some infusion centers that might not offer Enbrel when the payment limit goes into effect in 2027 because it would create a loss on every treatment. Upper payment limits create uncertainty, she said, and that requires guardrails.

“Affordability is a real and urgent problem,” she told lawmakers. “We all see it, and we all want to solve it, but for the community I serve, access has to be part of that conversation, and so does accountability for where the savings actually go.”

Bill opponents contend that the bill would narrow the scope of the PDAB’s authority to the point it couldn’t effectively improve affordability. They said it would gut the board before it starts seeing results.

“This bill would essentially strip Colorado’s PDAB of its ability to review prices of hundreds of commonly-prescribed drugs,” said Dr. Kyle Leggot, a family physician from Lone Tree. Drugs for rare diseases can also be prescribed to treat more common conditions.

Leggot also spoke about the financial stress associated with some drugs the PDAB has on its radar, such as the rheumatoid arthritis drug Humira.

“For many of my patients, it works wonders to control their symptoms,” he said. “But for some, the cost of Humira and drugs like it can suddenly change, whether it be a price increase from the drug manufacturer or a change in insurance coverage. That change in cost is devastating.”

Sophia Hennessy, the policy coordinator at the Colorado Consumer Health Initiative, emphasized that it took the PDAB multiple years to set its first upper payment limit. In 2024, the Legislature also passed a bill to require the board to consider input from people with rare diseases.

“Our board understands that they are the best tool car items have to lower the cost of prescription drugs, and they have approached this work with determined humility in response to patient concerns,” Hennessy said. “Our board is working hard to address and implement feedback from patient advocacy organizations. We need to give new structures time to work.”

Democratic Senators Mike Weissman of Aurora and Lisa Cutter of Jefferson County voted against the bill in committee.

“This would exempt a number of drugs the board could review,” Cutter said. “I’m not clear on what rare means. Often the drugs seem to be used for multiple things. Will drug companies really leave?”

“I think we need to make some room for this process, for PDAB to settle in,” she added.

The bill now heads to the full Senate for consideration.