In June of 2022, my father, Van Harrington Jr., died from complications of frontotemporal degeneration/dementia (FTD). When he passed, I was 40-years-old, but I lost him shortly after graduating from college. After three misdiagnoses because he was “too young” for dementia to be taken into account, his disease had progressed significantly. He left behind a wife, four children, and four grandchildren that he only got to spend time with as “himself” when they were babies.
In January the Food and Drug Administration approved Lecanemab, now known as Leqembi, using the accelerated approval pathway. After strong clinical trials, leading Alzheimer’s researchers agree this treatment changes the course of the disease in a meaningful way for people with early Alzheimer’s. But because of the decision the Center for Medical & Medicare Services has put in place, Medicare will not cover this treatment. CMS has never imposed such drastic barriers to access FDA-approved drugs, especially for people facing a fatal disease. People who are living with Alzheimer’s and their doctors should be able to decide if an FDA-approved treatment is right for them, and that treatment should be covered by Medicare.
Access to treatments that can change the course of the disease for people living with early Alzheimer’s and other forms of degenerative brain diseases is of critical importance to me and my family. I or one of my siblings or my niece or nephews could be diagnosed with this disease and suffer the same cruel fate as my father. This treatment may give one of us years that my father did not get.
Please join me in urging our members of congress, U.S. Reps. Don Davis and Greg Murphy, to send a letter to the CMS supporting full access to FDA-approved Alzheimer’s treatments.
Kathryn Harrington
Greenville
Harrington is an advocate with the Alzheimer’s Association.
