Adapted from Karen Marez’s speech at the CMS Rally in Downtown Seattle on May 22, 2023
Photo of Karen and her mother
Like many people, I became an Alzheimer’s advocate because I personally know this disease all too well. My family’s Alzheimer’s journey first began in 2008 when our mom was diagnosed with dementia.
Just a few months before, our dad had been diagnosed with stage 4 cancer as well, and we soon learned that while there were weapons for Dad’s cancer battle, there were none available to stop or slow the heartbreaking journey Mom was just beginning.
Over the course of several years, Dad successfully battled cancer back 5 times. Each time with FDA-approved treatments that were covered by CMS. Some of these treatments were new, and there were risks involved. But as a family, we were able to discuss with his doctor whether the benefits outweighed the risks.
While each treatment had side effects, they ultimately bought us more time with him. They gave us hope that it might be the last one he would need. They allowed Dad to continue caring for Mom, his high school sweetheart and wife of over 50 years, during her Alzheimer’s journey.
Of course, Mom continued to decline because no treatments were available to alter the unrelenting progression of her Alzheimer’s disease. What my family would have given to have just had the option to discuss treatment for her with her doctor. A treatment that could slow or successfully halt this disease in its tracks, one that could bring us hope and buy us more precious time with her, especially at the start of her Alzheimer’s journey.
It was in 2014, at the end of her journey, when I initially read about the very first anti-beta-amyloid Alzheimer’s drugs during one of its earlier trial phases. Sitting next to my bedridden mom in her hospice care room, I remember feeling hopeful for the first time in a long time for other families that might end up on this difficult journey.
If a treatment could be found that bought more time for families dealing with dementia, just like there are for families battling cancer, well, I know just how meaningful that is.
So almost a year after losing my mom to Alzheimer’s, I began my advocacy journey and I’ve helped with fundraising for research and speaking with our legislators in Olympia and DC about the urgency in our fight to #ENDALZ. And now here we are, 9 ½ years later, finally entering the era of treatment for this disease. But the Centers for Medicare and Medicaid Services is impeding access.
Every day without access to FDA-approved drugs, more than 2,000 people transition to a more advanced stage of Alzheimer’s, where they are no longer eligible for treatment.
This is unfair and unjust. And we need this to change. NOW. I encourage you to visit the Alzheimer’s Impact Movement website or attend the upcoming access rally on June 16 from 10-11 a.m. at the Seattle Center to learn more.