Dear Editor:
With more effective Alzheimer’s treatments on the horizon, it’s an exciting time in the fight against Alzheimer’s and all other dementia – but we have more work to do. That’s why volunteer advocates from across the United States will come together at our nation’s Capital to speak about the devastating toll of this disease and ask Congress to continue prioritizing it. While I am not able to be on Capitol Hill, I am writing to share my personal story and amplify the message of my fellow advocates.
My mom recently passed from a decade-long fight with vascular dementia, and this disease ravaged her brain and body. My family and I would have loved to be able to have had more time with her due to the amazing medical advances currently happening.
On January 6, the FDA granted accelerated approval to Leqembi, the second treatment for early stage Alzheimer’s disease. In what should be a time of hope, we are instead facing unprecedented barriers from the Centers for Medicare and Medicaid (CMS). Their decision to deny coverage of critical Alzheimer’s treatments is unfair to those living with the disease and their families.
Every day, more than 2,000 individuals over 65 transition from mild dementia to a more advanced stage of the disease where they are no longer eligible for these FDA-approved treatments. Now, more than ever, we need champions in Congress, including my representative, Congresswoman Robin Kelly, to join us in demanding CMS to reverse their unjust and harmful decision to deny coverage of Alzheimer’s drugs.
Instead of being able to speak about a success story where my mom was cured or even just experienced a reduction in symptoms, I can only imagine what my mother’s quality of life could have been. Instead of having access to FDA approved medication, my family and many others resort to treating psychiatric symptoms with sedative medications or hoping for a miracle with some low potency supplement.
I am unsure if readers are aware that Medicare covers all FDA approved drugs, except Alzheimer’s drugs! It is concerning that CMS is picking and choosing what is right for dementia patients instead of allowing the patient, their doctors, and their families to determine the best course of care for them. We can’t do this alone – and that’s why I want to strengthen the work of my fellow advocates in D.C. by also calling on our leaders in Congress, from right here in Illinois, including my Congresswoman Robin Kelly, to support full access to critical Alzheimer’s treatments.
Jakara L. Hubbar
Monee