DENVER — In a first-in-the-nation step, a Colorado board is considering setting maximum costs for “unaffordable” medications. But some caregivers and patients with rare illnesses are raising concerns the price caps could have unintended consequences — like taking away access altogether.
“Everybody wants things to be affordable. But if you just take away the access, that's not okay,” said Jennifer Reinhardt, whose daughter has a rare disease.
With cystic fibrosis, Reinhardt said her daughter experiences “constant lung infections until they can't be treated anymore, and then you either have a lung transplant or you die,” Reinhardt said.
But a prescription drug, TRIKAFTA, is controlling the infections and saving her daughter’s life.
That’s why Reinhardt is so alarmed that Coloradans like her daughter could lose access to their medications, as an unintended consequence of a new experimental board.
Colorado created the Prescription Drug Affordability Board (PDAB) 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.
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TRIKAFTA is one of the drugs recently considered by the board.
Reinhardt said reduced costs sound appealing, but many caregivers and patients who rely on TRIKAFTA raised concerns that the state’s attempts to cap the cost could push out drug manufacturers.
"A lot of the drug companies said that they would pull out of Colorado, and that is terrifying,” Reinhardt said.
"If they were to negotiate the price in Colorado, all the other states would be able to have that best price as well” because of the Medicaid Best Price Law, she said. "The manufacturer would have the choice of, we're going to pull out of Colorado, and have a high price in 49 states, or we're going to negotiate and have a low price for 50 states.”
While the board considered TRIFAKTA, Reinhardt said she and many others spent months worried they could lose access to the drug. Because drugs for rare diseases tend to be the most expensive, Reinhardt worries the board will continue putting patients like her daughter in a difficult situation.
As a single mom, Reinhardt said she feared having to move to another state to keep access to her daughter’s life-saving medication.
If a drug manufacturer decides not to honor the price set by Colorado’s board, Reinhardt said patients will get 180 days notice before losing access.
"Until we have a way to guarantee the access for the patients, I would like them exempted from the affordability board,” she said.
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Ultimately, the board decided not to cap the cost of TRIFAKTA. But in February, the board identified the immune disorder drug Enbrel as “unaffordable” and started moving forward with its first price cap.
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 Enbrel.
“Maya's drug already got looked at and she's already safe,” Reinhardt said. But she wants to help others. So, she’s supporting Colorado lawmakers trying to limit the board’s power, by preventing it from reviewing drugs that treat rare illnesses.
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.
Senators were expected to discuss the bill in recent months, but it has been pushed ahead several times. Lawmakers may be considering changes to the bill before reintroducing it. The lawmakers who introduced SB24-060 did not respond to Denver7's questions about the status of the bill.
Denver7 also contacted the Prescription Drug Affordability Board with questions, but a spokesperson said the board “cannot respond due to pending litigation against the PDAB.”
Reinhardt said she wants to board to be more transparent about how its actions can help patients, and if access could be affected. She said she has requested a meeting with Colorado Governor Jared Polis, who has supported the board and the state's broader efforts to reduce prescription drug costs.
A spokesperson for Governor Polis said his administration "has been committed to making health care, specifically prescription drugs, more affordable for Coloradans who depend on them. It is far past time to put people over profits." Governor Polis and the state legislature created the board and continue "pushing the FDA to approve Colorado’s application to import more affordable drugs from Canada," the spokesperson said.
The governor's office said it is monitoring the bill aimed at limiting the board's power.
"The PDAB is critical to ensuring Coloradans have affordable access to life-saving medications," the spokesperson said.
