DENVER — In a first-in-the-nation step, a Colorado board is considering setting a maximum cost for an “unaffordable” medication. But some lawmakers are trying to reel back the board’s power.
Colorado created the Prescription Drug Affordability Board three years ago to review prescription drug prices and determine whether certain drugs are “unaffordable for Colorado consumers.”
The board has the power to set price ceilings to limit costs.
Last month, the board decided for the first time to consider a price cap. It identified the immune disorder drug Enbrel as “unaffordable.”
Over the next six months, the board will do more research and listen to public feedback as it decides what “upper payment limit” it will set for the drug.
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“This is truly a groundbreaking process,” said Priya Telang, who works with the Colorado Consumer Health Initiative, which advocates on behalf of patients.
She said cutting prescription costs would help lower healthcare costs more broadly.
“Every Coloradan has a stake in prescription drug affordability, whether they take a prescription drug or not, just because it does impact their health care costs overall,” Telang said.
Expensive prescription drugs “are having a huge impact on our premiums, co-pays, every single health care cost for every single consumer,” she said.
But some Colorado lawmakers want to reel in the board’s power, by limiting which drugs it can review.
If passed, SB24-060 would stop the board from considering so-called “orphan drugs.” The federal government designates a drug as an “orphan” if it is approved to treat a rare condition affecting less than 200,000 people in the United States. Roughly 400 of the 600 drugs the board has identified for review have orphan drug status for at least one condition, according to the Colorado Consumer Health Initiative.
The Colorado senators sponsoring the bill say it would ensure people with rare diseases continue having access to treatment. They argue price caps on orphan drugs could push pharmaceutical manufacturers to stop selling those drugs in Colorado. Senators were expected to discuss the bill this month, but it has been pushed ahead twice into future meetings.
Advocates like Telang fear such a bill “would gut the work of the board before they're really able to get up and running.”
“Orphan drugs are often the most expensive drugs in the state,” she said. “So, it's the board's responsibility to review those thoroughly.”
The medication currently under review by the board, Enbrel, can cost patients and their insurance companies more than $46,000 a year. It is considered an orphan drug, so the board wouldn’t have been able to consider a price cap if the newly introduced bill had already passed.
When the board sets an “upper payment limit” on Enbrel’s price, patients and their insurers would pay that amount, in addition to a fee to cover the pharmacy’s costs for handling and dispensing the drug.
That's different from other prescription cost limits currently in place.
Colorado lawmakers have set limits on how much consumers pay out-of-pocket for insulin and EpiPens. Those laws cap the cost insurance companies can pass on to patients.
Whereas the Prescription Drug Affordability Board would cap total costs overall. The state law that created the board doesn’t specify what would happen if drug manufacturers refused to sell at that price.
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Kaitlyn Tollefson is one of the Coloradans relying on an orphan drug. She hopes the board will retain its power to review drugs like hers.
“There's so many people that are affected, that are affected just like me,” she said.
She was diagnosed a few years ago with early onset prurigo nodularis, an immune disorder that makes her skin break out in bumps.
"At 12 [years old,] I was begging my parents to allow me to skip school because I had been going through years and years of pejorative statements about my polka dot legs,” she said. The condition pushed her to pick at her skin and consider self-harm.
When she was 17 years old, a dermatologist finally diagnosed her condition and prescribed her a drug that could help.
"There’s only one treatment on the market currently, which is DUPIXENT, an orphan drug,” she said.
She struggled for three years to get her insurance to cover it. But her insurer considered it an “aesthetic condition,” despite its effect on her mental health. She was told to try lotions and herbal remedies, until her insurance company finally covered it.
"I'm able to have a co-pay of $20 for each of the injections, where without insurance, they would be $1,200 for every single dose, which was entirely unaffordable,” she said.
She testified in 2021 to support the creation of the affordability board, and she hopes Colorado lawmakers won’t exclude orphan drugs from the board’s purview.
“There's a cap there for a reason: to make these drugs at least somewhat affordable to the average person,” she said.
