Medicare creates unprecedented barriers to Alzheimer’s treatment

Just months after my diagnosis of mild cognitive impairment (MCI) due to Alzheimer’s at age 56, I found myself standing in front of my classroom of college freshmen, unable to talk to my students. An abrupt, early retirement followed. Now I, along with millions of others living with early-stage Alzheimer’s disease, am fighting for more time.

Imagine you are me.

Imagine knowing while one U.S. government agency, the Food and Drug Administration (FDA), has approved a treatment for this devastating disease that another agency, the Centers for Medicare & Medicaid Services (CMS) is keeping that treatment out of reach for patients who don’t have the financial means to pay the estimated annual cost of $26,500 out of pocket. That’s the harsh reality Alzheimer’s patients like me face every day.

In January, the Alzheimer’s community rejoiced — a second treatment, Leqembi, which slows Alzheimer’s progression when taken in the early stages, received FDA approval under the FDA’s accelerated pathway. Trial results later show it slowed the rate of cognitive decline by 27% compared with a placebo in patients with early disease. But in an unprecedented move, CMS — the government program seniors depend on for medical coverage — announced that they would severely restrict access to Leqembi and other FDA-approved Alzheimer’s treatments unless they receive standard approval. CMS is effectively blocking access to this life-changing treatment for Alzheimer’s patients across the nation.

For the first time in history, CMS is not covering a treatment of an FDA-approved drug. Instead, the agency is robbing us of precious time in the earliest stage of the disease. CMS is ignoring the pleas of patients and families across the nation. People like me who may be left with no other choice than to pay for this treatment out of our own pocket, take out a second mortgage, dip into savings reserved for late-stage Alzheimer’s disease care or simply go without because the treatment cost without CMS coverage is far too high to expect patients to be able to afford outright.

We’re not alone in our plea. A bipartisan coalition of members of Congress from both the House of Representatives and Senate along with attorneys general from 26 states and territories are calling for full coverage. This decision is also at odds with other federal agencies, namely the Department of Veterans Affairs, which is covering Leqembi for eligible veterans.

According to the Alzheimer’s Association, each day that CMS blocks access, more than 2,000 people transition to a more advanced stage of Alzheimer’s where they are no longer eligible for treatment. I could be one of them, and that enrages me.

Treatment means more time to do anything that I want to do, such as visit my niece in Seattle or my family in Australia. It also means more time to do simple things most people take for granted, such as swimming every day or seeing a movie or enjoying a concert.

I want to be present every single day I’m here. Recently I spoke at a rally outside the San Francisco CMS regional office to call on CMS to reverse its decision. Throughout May, Alzheimer’s advocates across the nation are joining together at each of the 10 CMS regional offices, from San Francisco to Boston, Dallas to Philadelphia. Like us, they will make it loud and clear: CMS must fix this mess and stop blocking access to Alzheimer’s treatments. Access to essential treatments should be covered by Medicare.

Sonja Lilienthal is a volunteer for the Alzheimer’s Association and an early-stage Alzheimer’s patient who lives in San Jose.