CMS must reverse its decision on FDA-approved Alzheimer’s treatments

By John Strader, Hollywood, FL

According to a new report from the Alzheimer’s Association, 827,000 Floridians are serving as caregivers for someone with Alzheimer’s or other dementia. With more than 580,000 in our state now living with the disease, everyone is impacted in some way.

I am currently a caregiver for my wife of 43 years who is living with Alzheimer’s. I can tell you that this disease is unforgiving. It does not care who you are, what you’ve done in life or how much you are loved. It strips a lifetime of memories built together and leaves someone who is scared, confused and restless.

Until recently, Alzheimer’s was a disease without hope. And while still without a cure, new treatments recently approved by the Food and Drug Administration (FDA) have been shown to give those in the early stages of this disease more time. More time to spend with loved ones and to enjoy life. More time to live.

But unfortunately, in an unprecedented move, the Centers for Medicare & Medicaid Services (CMS) have decided that these FDA-approved treatments will not be covered. Due to a coverage decision nearly two years ago, these treatments are only available to those who can afford to pay thousands of dollars out-of-pocket.

CMS has stolen more time from thousands of Floridians with this disease. In fact, every day without access to these FDA-approved treatments, more than 2,000 people across the U.S. transition to a more advanced stage of Alzheimer’s where they are no longer eligible. This is unacceptable.  

I recently joined nearly 900 hundred volunteer Alzheimer’s advocates from across the nation in Washington D.C. to protest this terrible decision in front of the White House and urge our Florida leaders to take a stand. It is outrageous that CMS covers all FDA-approved drugs except for this class of drugs for Alzheimer’s disease. In fact, CMS refused to reconsider its policy despite a request from the Alzheimer’s Association to reverse course. A request, which had broad bipartisan congressional support.

I urge Representative Wasserman Schultz to demand that CMS reverse this terrible decision. Likewise, I urge her to support three bipartisan bills to make this nation and Florida a better place for both those living with Alzheimer’s and caregivers. The NAPA Reauthorization Act (S. 133 / H.R. 619) and the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620) will ensure the nation continues to prioritize addressing Alzheimer’s and other dementia. The Comprehensive Care for Alzheimer’s Act (H.R. 1637 creates a more effective path to dementia care and addresses shortcomings in the way dementia care is currently delivered. We must also continue to build the momentum in research at the National Institutes of Health on Alzheimer’s disease through a $321 million increase for FY 2024.

Please join me in asking CMS to end this policy decision. We must act for those who cannot and for our family, friends and neighbors who are or will be impacted by Alzheimer’s or other dementia. Use your voice to change this unjust action — click here.

John Strader is an Alzheimer’s advocate and caregiver for his wife living in Hollywood, FL. 

Leave a Reply