I’m a 52-year-old pediatrician diagnosed with younger-onset Alzheimer’s disease in November 2020. That is not my story, but it is now my life. This is what happens when Alzheimer’s tries to take over. Before Alzheimer’s, I practiced pediatrics in Boston, on the Navajo Nation for the Indian Health Service and for 7 years in Malawi, Africa. Now, Alzheimer’s affects my visual/spatial reasoning, typing/spelling, calculations and, at times, my ability to find words.
My neurologist suggested I was a strong candidate for the Food and Drug Administration-approved drug Aduhelm because of my age and rare diagnosis. Since Aug. 31, my wife and I travel 47 miles each way monthly to an infusion center where I receive Aduhelm in hopes it will extend the quality of my life for as long as possible. I have a 21-year-old daughter and a 17-year-old son who are also living through this. I want to do everything I can to spend more quality time with them and my wife.
The Centers for Medicare and Medcaid Services proposal to limit insurance coverage for Aduhelm to those in large clinical trials will reduce access to an already-approved medication. For those of us living in remote areas, we will likely be cut off.
For me and many others living with Alzheimer’s, Aduhelm is the only lifeline at this point. The thought that a bureaucracy might pull that out from under us only makes an already difficult diagnosis worse. Please join me and 6.2 million Americans living with Alzheimer’s and tell CMS to reconsider this horrendous decision.
Alan L. Schooley
Durango
