The Centers for Medicare & Medicaid Services (CMS) released their revised coverage policy for a new Alzheimer’s treatment, Aduhelm, on April 7. Their initial proposal, released in January, excluded people with Down syndrome and other intellectual disabilities, a group at high risk of developing Alzheimer’s. In response to backlash from the disability community, the policy was revised.
There has been much controversy over this novel Alzheimer’s therapy, with concerns about its effectiveness, as well as potential side effects. Citing these concerns, CMS has said that it will only cover the cost of Aduhelm for those who are involved in clinical trials. The initial decision not to provide coverage for those with intellectual or developmental disabilities would have created even more barriers to their involvement in trials, continuing a discriminatory practice.
After the exclusion of people with Down syndrome was made public, the disability community quickly mobilized, launching a joint effort to fight back, and ensure equality for all in medicine. “This collaboration among national Down syndrome organizations is particularly important given how prevalent Alzheimer’s disease is in our community,” a coalition spokesperson said in January. “By working together, we’re able to bring the expertise of each organization together to mobilize self-advocates, families, caregivers, medical professionals, and the general public to push for inclusion of individuals with Down syndrome in this critical process.”
Current drugs alleviate symptoms of Alzheimer’s, but there is no treatment to slow the progress of the disease. Biogen’s Aduhelm is the first drug to attempt to treat what is believed to be the cause of Alzheimer’s. People with Alzheimer’s have a build-up of amyloid plaques in their brains, and the creators of Aduhelm believe that targeting this build-up could slow the progress of Alzheimer’s.
In June of 2021, the Federal Drug Administration (FDA) approved this new drug for all patients with Alzheimer’s. CMS typically covers drugs approved by the FDA, following any restrictions they give. The FDA has issued no limits on which patients may receive the Aduhelm treatment. Yet, CMS is restricting who will receive coverage for this expensive treatment, which is given through intravenous infusion. Biogen originally priced the treatment at $56,000 per year. When they realized that physicians, insurance companies, and patients were appalled at the high price tag, they lowered the cost to $28,000.
By the time they are in their 60s, about half of those with Down syndrome develop Alzheimer’s.
This is a victory for the Down syndrome community, and a step towards greater equality. Down Syndrome Affiliates in Action, GiGi’s Playhouse Down Syndrome Achievement Centers, the Global Down Syndrome Foundation, the LuMind IDSC Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society published a joint statement in response to the decision, stating, “The next phase of our collective advocacy must be focused on supporting the inclusion of people with Down syndrome in clinical trials for Alzheimer’s treatments.”
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