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Medicare considers covering expensive Alzheimer's drug for those in clinical trials

RACHEL MARTIN, HOST:

The nation's Medicare program for older Americans has announced a plan to limit coverage of a costly and controversial new drug for Alzheimer's disease. NPR's Jon Hamilton reports that the plan would require Alzheimer's patients to enroll in an approved study of the drug if they want Medicare to pay for it.

JON HAMILTON, BYLINE: The proposed plan would apply to all drugs that remove a toxic substance called amyloid from the brain. Right now there is only one - a drug called aducanumab. It received conditional approval from the Food and Drug Administration back in June. Since then, it's been unclear whether Medicare would cover the drug, which may or may not slow the loss of memory and thinking. On Tuesday, the Centers for Medicare and Medicaid Services proposed strict limits on coverage. Dr. Lee Fleisher, the agency's chief medical officer, explained the rationale.

LEE FLEISHER: While there may be the potential for promise with this treatment, there is also the potential for serious harm to patients.

HAMILTON: Side effects often include bleeding or swelling in the brain, so the proposal would limit coverage to patients in approved clinical trials. Fleisher says that would allow Medicare to monitor side effects and see whether aducanumab actually provides a benefit. It would also ensure that only people in the earliest stages of Alzheimer's receive the drug, which costs $28,000 a year. The proposal drew sharp criticism from groups including the Alzheimer's Association, which had pushed for more expansive coverage. Robert Egge, the group's chief public policy officer, says patients should not have to join a research study to get the drug.

ROBERT EGGE: It's very important that they're able to meet with their medical providers and figure out if it's the right treatment for them, and if they decide it is, they should have access to it.

HAMILTON: The association says the decision also discriminates against Black and Hispanic patients, who are more likely to develop Alzheimer's but less likely to take part in clinical trials. But Sean Dickson of the West Health Policy Center says limiting coverage for aducanumab is appropriate until studies show whether the drug can truly slow the progress of Alzheimer's.

SEAN DICKSON: It's not something that we as taxpayers should be paying for if it's not actually going to help people.

HAMILTON: Medicare officials plan to make a final decision about coverage in April.

Jon Hamilton, NPR News. Transcript provided by NPR, Copyright NPR.

Jon Hamilton is a correspondent for NPR's Science Desk. Currently he focuses on neuroscience and health risks.