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CMS denying important treatment: Alzheimer’s patients, and their families, serve better

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The horribly sad and devastating neurodegenerative disorder known as Alzheimer’s impacts millions of people worldwide and is rapidly expanding. Its impact stretches to too many families – mine included – with no end in sight. Alzheimer’s is the sixth leading cause of death in the United States. There is no cure, and the available treatments only offer modest symptomatic relief, they do not slow or stop the progression of the disease.

I was very happy to read Crystal Graham’s recent AFP article, “Department of Veteran Affairs to provide coverage for new Alzheimer’s treatment,” detailing the VA’s leadership in getting this new treatment to our veterans. The article also, sadly tells the story of this important new treatment being denied to our seniors via the Centers for Medicare and Medicaid Services.

Witnessing someone you love decline mentally and physically, unable to live independently, struggle and fail with memory, language, and simple problem-solving is gut-wrenching for friends and family.

After decades of having only medications to treat Alzheimer’s symptoms but not its root causes, the Food and Drug Administration (FDA) approved the first disease-modifying therapy in 2021. This new type of immunotherapy targets and destroy specific proteins which helps to slow or may even stop the progression of the disease. These drugs have been shown to be safe and effective in clinical trials, and they can potentially revolutionize the treatment of Alzheimer’s, which is why the FDA granted accelerated approval to these disease-modifying therapies.

All the excitement over this historic medical progress came to a screeching halt when the Centers for Medicare and Medicaid Services (CMS) announced that Medicare would not cover the treatment unless it went through yet another lengthy FDA approval process. This unprecedented override of the FDA decision is a significant setback for the fight against Alzheimer’s, making it much more difficult for people with this disease to access potentially life-saving treatments.

Patients with Alzheimer’s have already waited years for access to these lifechanging, disease-modifying therapies. CMS should trust the FDA. Every hour Alzheimer’s patients are denied coverage for this new category of medications is another hour of memory loss, shrinking independence, and further reduction in quality of life.

We are fortunate to have members of Virginia’s Congressional Delegation fighting for Alzheimer’s patients and their families. Senator Tim Kaine’s 2019 Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act being one of the important steps forward in the fight against this devastating disease.

I urge Senator Kaine to continue to stand up and fight for Virginia Alzheimer’s patients and encourage the CMS to rethink this unprecedented override of the FDA.

These drugs are FDA approved and can make a meaningful difference in the lives of Alzheimer’s patients and their loved ones. These unnecessary restrictions cost patients precious time as their disease progresses. Virginians living with Alzheimer’s cannot and should not be made to wait.

Andrew Whitley is the former executive director of the Democratic Party of Virginia.