Coloradans fear plans to cut prescription drug prices could take away access

DENVER — In a first in the nation, a Colorado board is considering setting a maximum cost for “unaffordable” drugs. But some caregivers and patients with rare diseases have raised concerns that price caps could have unintended consequences, such as removing access altogether.

“Everyone wants to make things affordable, but you can’t just take away access,” said Jennifer Reinhardt, whose daughter has a rare disease.

Reinhardt said her daughter has cystic fibrosis and “experiences continual lung infections until they can’t be treated, and then either she gets a lung transplant or she dies.”

However, the prescription drug Trikafta is controlling the infection and saving her daughter’s life.

That’s why Reinhardt is so concerned that Coloradans like her daughter could lose access to the drug as an unintended consequence of the new experimental board.

Created by Colorado Prescription Drug Affordability Committee (PDAB) reviewed prescription drug prices three years ago to determine whether certain drugs were “out of reach for Colorado consumers.”

The board has the power to set price caps to limit costs.

TRIKAFTA is one of the drugs recently being considered by the Board.

Reinhardt said the cost savings sound appealing, but many caregivers and patients who rely on Trikafta have expressed concern that the state’s attempt to cap costs could drive out drug companies. He said he did.

“A lot of drug companies have said they’re leaving Colorado, and that’s scary,” Reinhardt said.

“If Colorado can get the best price, every other state will be able to get the best price as well, thanks to the Medicaid Best Prices Act,” she said. Either we can pull out of Colorado and get higher prices in 49 states, or we can negotiate lower prices in 50 states. ”

While the board considered Trifactor, Reinhardt said she and many others spent months worrying that they would no longer be able to obtain drugs. Reinhardt said she worries the board will continue to put patients like her daughter in difficult situations because drugs to treat rare diseases tend to be the most expensive.

Reinhardt, a single mother, said she was worried she would have to move to another state to keep access to her daughter’s lifesaving medication.

If a drug company decides not to comply with the prices set by the Colorado board, patients will be given 180 days’ notice before losing access, Reinhardt said.

“I would like to see patients exempted from the Affordability Commission until we have a way to ensure patient access,” she said.

Ultimately, the Board of Directors decided not to place a cap on TRIFAKTA’s costs. But in February, the board found the immune disease drug Enbrel to be “unaffordable” and began moving ahead with the first price cap.

Over the next six months, the board will conduct further research, listen to public feedback, and decide on a “payout cap” for Enbrel.

“Maya’s drug test has already been done and she is already safe,” Reinhardt said. But she wants to help others. So she supports Colorado lawmakers who are trying to limit the board’s power by blocking its review of drugs that treat rare diseases.

If you pass, SB24-060 It would prevent the board from considering so-called “orphan drugs.” The federal government designates drugs approved to treat rare diseases that affect fewer than 200,000 people in the United States as “orphans.” According to the Colorado Consumer Health Initiative, about 400 of the 600 drugs the committee identified for review qualify as orphan drugs for at least one condition.

Senators were expected to debate the bill in recent months, but it has been delayed 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 bill’s status.

Denver7 also referred questions to the Prescription Drug Affordability Commission, but a spokesperson said the commission “cannot respond due to the pending litigation against the PDAB.”

Reinhardt said he wanted to get more transparency on board about how the action could help patients and whether access could be affected. He said he has requested a meeting with the committee and Colorado Gov. Jared Polis, who has supported the state’s broader efforts to lower prescription drug costs.

A spokesperson for Gov. Polis said his administration has been “committed to making health care more affordable for Coloradans who rely on health care, especially prescription drugs. It’s long past time to put people before profits.” It has passed,” he said. Gov. Polis and the state Legislature have established a board to continue “pressing the FDA to approve Colorado’s application to import more affordable medicines from Canada,” the spokesperson said.

The governor’s office said it is monitoring legislation aimed at limiting the board’s powers.

“PDAB is critical to ensuring that Coloradans have access to lifesaving medicines at affordable prices,” the spokesperson said.

Coloradans fear prescription drug price reduction plan will take away access