For people living with mild cognitive impairment (MCI) due to Alzheimer’s disease, the Centers for Medicare & Medicaid Services (CMS) proposal to sharply limit access to current and future treatments approved by the Food & Drug Administration (FDA) has devastating repercussions. Not only does this draft decision diminish hope for these individuals and their loved ones, but if implemented, it would effectively exclude those living in rural areas who are too far away from major research institutions to access clinical trials. Underrepresented communities will also face additional burdens to accessing treatment due to geographic limitations as well as the well-documented challenges of enrolling these populations in clinical trials.
The people facing this fatal disease deserve the opportunity to discuss the risks and benefits with their clinicians, make informed decisions, and access treatments approved by the FDA.
Since the draft was released, people living with dementia have been making their voices heard, sharing their stories and advocating for themselves and others with early-stage Alzheimer’s who will be impacted by this decision the most. Here are some excerpts:
“This decision is a heartbreaker for me, my family, my friends, my loved ones, and I feel like it’s taking my life away from me again. I’ve worked all my life. I’ve paid into the Medicare system. I’ve taken care of my family. I taught in the community, and I feel like I’m not asking for something that any other person over 65 wouldn’t be asking for: to take care of my medical needs and allow me to live, hopefully, another six to eight years before this disease progresses into the phase where I won’t be able to communicate with people, as my mother has been through. I have lived through that. I don’t want my family and friends to have to go through that.” -Lori W., Oregon
“I really hope that the decision makers at CMS would seriously reconsider this decision. It impacts hundreds of thousands, maybe millions of people in this country. And we’re not only talking about this drug but future drugs to fight this disease that are in the pipeline. I need some hope. I want to spend time with family, and quality time. And by making this decision you will make it that much more difficult for me to feel that there is a potential decision down the road.” -Jay R., North Carolina
“CMS is taking an unprecedented step to require the additional clinical trial for a treatment already approved by the FDA. Why? We believe people living with Alzheimer’s disease deserve the same access to therapy given to those people living with HIV/AIDS, cancer, heart disease, and any other condition. So I ask myself and I ask them: why are you treating people with Alzheimer’s disease differently? Why are you treating me differently than any other disease? That’s what I want to know: why?” -Arthena C., Georgia
“I am concerned that the additional time it takes to find, apply and participate in a clinical trial will have a significant adverse impact for those of us living with early-stage Alzheimer’s. Time is a precious commodity to me. The months that it will take to go through the process are valuable months that I’ll lose due to further deterioration of this disease. For me, that results in lost opportunity to have more quality time with my wife, my two sons, my friends. A few months or even a few years mean a whole lot more to somebody like me than it does to somebody without the disease.” -Joe M., Massachusetts