Opinion: The Four Corners is unlikely to benefit from a promising Alzheimer’s treatment

I’ve made it my life’s mission to help provide people with better health care. 

For years, I was a pediatrician in Boston, then in the rural southwest desert of the Navajo Nation, where I worked for the Indian Health Service. After that, I spent seven years in southeast Africa working to improve rural Malawians’ access to HIV treatments. 

But at age 51 in 2020, I was diagnosed with young onset Alzheimer’s, and had to close my medical practice. The disease took away my profession, but not my vocation. 

For as long as I’m able, I will continue to advocate for patients, especially my fellow 6.7 million Americans with Alzheimer’s and those who care for and support them. We are all in a race against the clock as medical researchers seek treatments that can slow or stop the progress of this degenerative disease. 

Fortunately, there’s hope on the horizon. Last November, President Biden declared, “we are on the cusp of life-saving advances that can forever change the course of the disease.” He was right. Shortly thereafter, the Food and Drug Administration approved lecanemab. Also known by its brand name Leqembi, lecanemab is a monoclonal antibody that targets the beta amyloid plaques that build up in the brain and have long been associated with Alzheimer’s. 

Two years ago, a similar drug called aducanumab — brand name, Aduhelm — that also targets these plaques won FDA approval. I’ve been taking Aduhelm and have found it helpful, though some medical professionals felt the FDA’s approval of that medicine was premature, given some ambiguities in the clinical trial data. 

Lecanemab looks to be far more fruitful. It’s the first treatment that definitively slowed the progression of Alzheimer’s in clinical trials. Researchers found the anti-amyloid antibody slowed cognitive decline over 18 months by 27%. 

Yet very few Alzheimer’s patients will be able to access the drug. 

That’s because last year, the Centers for Medicare & Medicaid Services — the agency that oversees both those health insurance programs — announced a blanket policy of refusing to cover Aduhelm and all future FDA-approved anti-amyloid monoclonal antibodies for Medicare recipients, unless those patients were among the few lucky patients enrolled in specially designated clinical trials. Though the FDA had approved the drugs as “safe and effective,” the Centers for Medicare & Medicaid Services questioned whether they are “reasonable and necessary.”  

Such a decision is arbitrary and unjustified. the Centers for Medicare & Medicaid Services has never before second-guessed the nation’s top health and safety regulator when it comes to medicines, and its decision to start doing so will have disastrous consequences for patients. 

The Centers’ requirement that patients enroll in special clinical trials, which generally take place in urban areas with affluent populations, effectively excludes rural populations and lower-income individuals, often racial minorities. I have been fighting health disparities between rich and poor from Boston to the Navajo Nation to Malawi. 

Alzheimer’s makes no distinction between rich and poor, but now the government does. Without insurance coverage, only the well-off will be able to afford a medication with a list price of more than $2,000 per month.  

As a physician it’s my duty to advocate for this care for all who need it. And as an Alzheimer’s patient, it’s my own life on the line. The Centers for Medicare & Medicaid Services may revise its decision, but that could take many more months. Every day, about 1,800 Americans move from mild to moderate Alzheimer’s dementia. Time is of the essence. 

With lecanemab, we are not just “on the cusp of life-saving advances,” as the president said. We have one in our grasp. The Centers for Medicare & Medicaid Services must allow access to the patients who need it without further delay.

Alan Schooley, M.D., lives in Durango.