I live in Concord, the town where the Revolutionary War began, resulting in many Americans fighting for and losing their lives. Today, I am fighting a battle that has the same high stakes: The fight against Alzheimer’s disease, a fight which is currently being fueled by a wildly unjust decision by the Centers for Medicare & Medicaid Services to deny the more than 6 million Americans diagnosed with the deadly disease the latest FDA-approved treatments.
And I am one of the lucky ones — for now. I was diagnosed with Alzheimer’s early in its progression, which allowed me to participate in a clinical trial for a new treatment with lecanemab, a medication that seeks to reduce amyloid beta plaque, a protein associated with Alzheimer’s, in patients’ brains. I wanted to join a clinical trial because I have been a researcher and consultant throughout my career and know the role that clinical trials play in driving new innovations in drugs and patient outcomes.
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I served as the dean and a professor at Northeastern’s business school until I was diagnosed at 57 with early-onset Alzheimer’s in 2021. Following my diagnosis, I retired and asked myself “what’s next?” As a lifelong workaholic, I couldn’t just sit at home. My wife, Pam, and I became active in our local Alzheimer’s Association chapter where I currently serve as a member of the national Early-Stage Advisory Group.
The opportunity to join the clinical trial gave me a sense of purpose and a concrete way to help others. The drug in my clinical trial, Leqembi — the brand name of lecanemab — was shown to reduce amyloid beta plaque in the brain. Reducing the presence of this protein associated with Alzheimer’s may then slow the rate of cognitive decline.
I am often asked if I can feel the difference. Quite frankly, it’s hard to tell how much has changed, which in many ways is the point. Anyone who thinks this will flip the switch and make everything perfect is not being realistic. Instead, I am grateful to have something that slows the progression of Alzheimer’s.
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Every bit of that deceleration is important because it gives me more time to do ordinary things I enjoy, like independently taking walks with my two dogs, working out at the gym, a night at the movies with my wife, hiking, and traveling. What seems quite ordinary is extraordinary to someone like me who is facing the symptoms of this disease.
The double-blind trial I was part of lasted 18 months, and I’ve been fortunate enough to continue receiving infusions of the drug since the trial ended. While lecanemab isn’t a cure, the trials revealed that this treatment slowed cognitive decline by 27 percent and, based on the results, the Food and Drug Administration recently approved it for others living with early-onset Alzheimer’s.
It’s actually one of several new treatment breakthroughs that address the underlying biology of Alzheimer’s disease, not just the symptoms, finally offering conclusive proof that there’s a way to change the course of the disease.
But almost no one has access to these treatment innovations.
The Centers for Medicare & Medicaid Services has made the unprecedented decision to deny coverage for these FDA-approved treatments. No other FDA-approved treatment for any disease has been denied by CMS.
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Participating in a clinical trial has allowed me to play a small part in advancing the research and progress in the fight against this fatal disease, and it has also provided me coverage for the cost of the drug. But the fact that most people cannot access these breakthroughs dulls the brighter future offered by these treatments.
It’s a cruel twist of fate to have Alzheimer’s, but that is the current reality for me and the more than 6 million other Americans, including more than 130,000 in Massachusetts. To then be told that those of us in the early stages cannot access life-altering, FDA-approved treatments is simply unacceptable.
Like those early revolutionaries in Concord, I am committed to fighting for our rights. We must implore CMS to reverse its decision and make these new Alzheimer’s treatments accessible.
There are rallies this month at every CMS regional office across the country — one will be held Wednesday in Boston. My hope is that together, our rallying cry will equal the “shot heard round the world.” Let’s secure the freedom to access FDA-approved drugs that can extend the quality of life for people living with Alzheimer’s and their caregivers.
Hugh Courtney lives in Concord.
