33 states provide the CMS program to pay for genes on sickle cell cells

Nearly three dozen states have signed an American government initiative designed to help improve access to gene therapies that can eliminate serious sickle cell symptoms, but remain little because of their high price labels.

The CMS said on Wednesday that 33 states, as well as the District of Columbia and Puerto Rico, will participate in the “model of access to cells and genes” to coordinate centralized insurance coverage for treatments. Between 50% and 60% of people with sick people in the United States have Medicaid coverage And participating states represent around 84% of Medicaid beneficiaries with the condition, the agency said.

Two of these treatments, Casgevy de Vertex Pharmaceuticals and Lyfgenia de Bluebird Bio, were approved by the Food and Drug Administration in December 2023 after having proven that the tests could be able to Free people with severe sickle cell anemia of serious episodes of pain they experience. However, treatments are complex to administer, involving a one -month process and a “preconditioning” chemotherapy that involves the risk of infertility. They also cost $ 2.2 million and $ 3.1 million respectively, which raises concerns about their affordability and the impact on Medicaid state budgets.

Since approval, the adoption of the two treatments has been slow. In its latest quarterly report, Vertex awarded $ 14.2 million in Casgevy and said that, until May 1, cells had been collected from around 90 patients looking for treatment. BlueBird was taken in private this year – partly because of the challenges of the sale of his gene therapies – and in his last public financial report, said that 17 patients had started in Lyfgénie in the first nine months of 2024.

The CMS program could help stimulate these figures by asking the government to negotiate what is called “results based on results” with product manufacturers. These agreements bind payment of health payment that a processing is supposed to deliver. If this advantage does not materialize, the insurer receives a discount or reimbursed.

Some insurers have long used results based on results for certain gene therapies and represent a means of reducing the financial risks associated with treatments generally carrying a new figure price. But the CMS model, which was initially drawn up during the Biden administration and taken up by the Trump administration earlier this year, would coordinate the negotiation of a specific framework in many states so that everyone does not have to conclude their own agreement.

The federal government will also cover a “defined scope” of fertility preservation and other costs, such as travel costs. It could also provide up to $ 9.55 million in additional state support to help awareness and monitoring of data, as results -based agreements require the collection of in -depth information. The CMS could extend the program to cover “other diseases with high -cost and high impact therapies,” said the agency.

“This model has the potential to improve the health results of sickle cell disease while more effectively guaranteeing state and taxpayers’ dollars,” said Abe Sutton, assistant director of CMS and CMS CMS in Innovation Center, in a press release.