Medicare creates unprecedented barriers to Alzheimer’s treatment



Simply months after my analysis of gentle cognitive impairment (MCI) because of Alzheimer’s at age 56, I discovered myself standing in entrance of my classroom of school freshmen, unable to speak to my college students. An abrupt, early retirement adopted. Now I, together with thousands and thousands of others residing with early-stage Alzheimer’s illness, am preventing for extra time.

Think about you’re me.

Think about realizing whereas one U.S. authorities company, the Meals and Drug Administration (FDA), has authorised a therapy for this devastating illness that one other company, the Facilities for Medicare & Medicaid Companies (CMS) is preserving that therapy out of attain for sufferers who don’t have the monetary means to pay the estimated annual value of $26,500 out of pocket. That’s the cruel actuality Alzheimer’s sufferers like me face every single day.

In January, the Alzheimer’s group rejoiced — a second therapy, Leqembi, which slows Alzheimer’s development when taken within the early phases, obtained FDA approval beneath the FDA’s accelerated pathway. Trial outcomes later present it slowed the speed of cognitive decline by 27% in contrast with a placebo in sufferers with early illness. However in an unprecedented transfer, CMS — the federal government program seniors rely upon for medical protection — introduced that they’d severely limit entry to Leqembi and different FDA-approved Alzheimer’s therapies except they obtain commonplace approval. CMS is successfully blocking entry to this life-changing therapy for Alzheimer’s sufferers throughout the nation.

For the primary time in historical past, CMS just isn’t overlaying a therapy of an FDA-approved drug. As an alternative, the company is robbing us of treasured time within the earliest stage of the illness. CMS is ignoring the pleas of sufferers and households throughout the nation. Folks like me who could also be left with no different alternative than to pay for this therapy out of our personal pocket, take out a second mortgage, dip into financial savings reserved for late-stage Alzheimer’s illness care or just go with out as a result of the therapy value with out CMS protection is much too excessive to anticipate sufferers to have the ability to afford outright.

We’re not alone in our plea. A bipartisan coalition of members of Congress from each the Home of Representatives and Senate together with attorneys basic from 26 states and territories are calling for full protection. This resolution can also be at odds with different federal businesses, specifically the Division of Veterans Affairs, which is overlaying Leqembi for eligible veterans.

Based on the Alzheimer’s Affiliation, every day that CMS blocks entry, greater than 2,000 folks transition to a extra superior stage of Alzheimer’s the place they’re not eligible for therapy. I could possibly be certainly one of them, and that enrages me.

Therapy means extra time to do something that I need to do, corresponding to go to my niece in Seattle or my household in Australia. It additionally means extra time to do easy issues most individuals take without any consideration, corresponding to swimming every single day or seeing a film or having fun with a live performance.

I need to be current each single day I’m right here. Lately I spoke at a rally outdoors the San Francisco CMS regional workplace to name on CMS to reverse its resolution. All through Could, Alzheimer’s advocates throughout the nation are becoming a member of collectively at every of the ten CMS regional workplaces, from San Francisco to Boston, Dallas to Philadelphia. Like us, they’ll make it loud and clear: CMS should repair this mess and cease blocking entry to Alzheimer’s therapies. Entry to important therapies needs to be coated by Medicare.

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