Jessica Miller
More than 6 million Americans are living with Alzheimer’s, including 96,000 in Alabama with an estimated 211,000 family and friends serving as unpaid caregivers. As Executive Director of the Alabama Alzheimer’s Association, it is my honor and privilege to speak for them.
Just last week, Alzheimer’s Association volunteers from across the state came together in Montgomery, to demand a reversal of the decision to deny people living with Alzheimer’s access to FDA-approved drugs. In every state across the nation, people impacted by Alzheimer’s, including caregivers and those living with the disease, are joining together to rally for access to FDA-approved Alzheimer’s treatments.
On June 7, 2021, people living with Alzheimer’s and their families welcomed the historic decision of the Food and Drug Administration (FDA) and its accelerated approval of aducanumab. On January 6 of this year, a second treatment, lecanemab received FDA accelerated approval. These approvals signaled hope to thoseliving with early-onset Alzheimer’s and Mild Cognitive Impairment (MCI) – two treatments that could change the course of the disease in a meaningful way, giving them more time to actively participate in daily life, have sustained independence, and hold on to memories longer.
That hope was dashed not once, but twice, when the Centers for Medicare and Medicaid Services (CMS) issued an unprecedented decision to block Medicare coverage of FDA-approved treatments that target amyloid for Alzheimer's disease. At no time in history has CMS imposed such drastic barriers to access on FDA-approved treatments for people facing a fatal disease.
Each day matters when it comes to slowing the progression of this disease. Early access to these treatments is crucial. Each day without access to FDA-approved drugs more than 2,000 people transition to a more advanced stage of Alzheimer’s where they will no longer be eligible for treatment.
Currently, CMS covers all FDA-approved drugs with the glaring exception of Alzheimer’s treatments. CMS has stated it will cover these life-enhancing treatments if the FDA gives its final approval which is slated for July, but only with the implementation of a national registry.
We at the Alzheimer’s Association believe this is just another hurdle that will make it more difficult for patients and physicians to access these treatments. In March, more than 900 advocates representing every state in our country, along with the District of Columbia, rallied before the White House demanding that CMS change its decision. They met with their members of Congress to ask for their support and, to date, more than 100 bipartisan members of Congress have actively called on CMS to reverse their decision.
Closer to home, on our Alzheimer’s Association State Advocacy Day, we met with our members of congress to ask for their support of a resolution to start the Alzheimer’s Disease and other Dementia advisory council. This council will be tasked with developing a “State Alzheimer's Plan” to assess the impact of Alzheimer's disease in our state and develop strategies to respond to the Alzheimer's crisis.
The council would also work together to ensure that the workforce, caregiving, Medicaid, and public health issues and opportunities are identified and agencies and partners are working together - with advice from internal and external partners. Whether the focus is at the state level or on the national stage, the Alabama Alzheimer’s Association is working to make life manageable for those currently living with Alzheimer’s and dementia and to ensure the proper resources are available for their families.
For more information on how you can get involved or to access needed resources, call our 24/7 HelpLine at 800-292-3700 or visit our website at alz.org/al.
--Submitted by Jessica Miller, Executive Director for the Alzheimer's Association in Alabama and a resident of Vestavia.
