To the Editor:
Recently I had the honor of attending my 6th Alzheimer’s Advocacy Forum in Washington, DC. There were 1,200 advocates in attendance representing every state in the Union. When I use the term Alzheimer’s, it encompasses all related dementias. As Alzheimer’s Ambassador to Congressman William Keating, I was able to talk to the Congressman about the current Alzheimer’s requests from the federal government. Alzheimer’s is a health crisis of epic proportions and we all need to be concerned about the future. It is the 6th leading cause of death and over 5.5 million have been diagnosed in the U.S (130,000 in MA). It is also the most expensive illness to treat, and in 2018 sixteen million family members provided 18.5 billion hours of unpaid care to those living with Alzheimer’s and other dementias (an economic value of approximately $234 billion). There is no cure, no prevention, and no effective treatment for Alzheimer’s and related dementias.
With these facts in mind, the advocates in Washington met with their senators and representatives to make four requests. The first is an additional 350 million for the NIH (National Institute of Health) research. The second is 20 million to implement the BOLD act passed last year. BOLD directs the CDC to strengthen the public health infrastructure by instituting effective Alzheimer’s interventions. The third is a bill to support educating physicians and the public to the Medicare coverage authorized to cover comprehensive care planning when a dementia diagnosis is determined. The last request is to have the Older Americans Act (OAA), which passed in 1965, benefits available to any person receiving a dementia diagnosis regardless of age. Currently the OAA only applies to those age 60 and over. Personally, I consider this last request extremely important. I have many friends who have received a younger-onset diagnosis. The impact on a family in this age group is devastating. These are families with young children who now face the possibility of losing an income, the emotional support of a spouse or partner, and a future that becomes increasingly challenging.
I am writing this letter to implore you to contact your senators and representatives and tell them how important these issues are. We have the good fortune to live in a state whose elected officials are very supportive of Alzheimer’s legislation. However, I believe it is critical we remind them of our concern. It is too easy for an issue to get lost in the demands of federal issues.
If you have not been touched by Alzheimer’s or another dementia, you will be in the not too distant future. I was a caregiver for my partner who was diagnosed at age 67. Her journey ended in 2015, but mine has not. I will continue to advocate until there is an end to the heartbreak of a dementia diagnosis.
Respectfully submitted,
Barbara A. Meehan
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