Sunday, May 18, 2008

Alzheimer’s Association 20th Annual Public Policy Forum

This was my eighth trip to Washington, DC, to ask for increased research funds for Alzheimer’s. It becomes frustrating when nothing seems to happen. NIH funding for Alzheimer’s research has remained flat for the past five years, and Maureen Reagan’s $1 billion goal appears to be unattainable.

It is our job as advocates to educate our legislators and remain visible. We wore our purple “beauty queen” banners which made us hard to forget. Sandra Day O’Connor and Newt Gingrich both testified at the Congressional Hearing on Alzheimer’s. One of the senators said, “This is the biggest group I have ever seen at a hearing.” The room was crowded and people stood along both walls and in the back. Mrs. O’Connor said, “This is a problem that cries out for help.” She said research was closer than ever to finding a way to dissolve the plaques which are the hallmark of Alzheimer's.

My grandson, Colby, traveled to Washington, DC, with me for his second Public Policy Forum. The Alzheimer’s Association asked us to focus on two main issues this year. We asked for $125 million increase to the $644 million spent on Alzheimer’s research, and to phase out the Social Security disability two-year wait for Medicare benefits. The two-year wait places a hardship on people with early onset dementia during the time when medical treatment is most helpful.

It is more urgent than ever to find a cure for Alzheimer’s as the baby boomers age. “A cure can save Medicare and Medicaid $60 billion a year,” Colby told his parents on the ride home from the airport. “I learned a lot,” he said. And he did. He learned that 500,000 Americans have developed Alzheimer’s before age 65 and more than 5 million people in the United States have Alzheimer’s.

“Why do you stay involved?” is a question I hear frequently. Alicia, who has early onset Alzheimer’s told our representative's legislative aide, “Linda doesn’t have to do what she does since her husband passed away.”

I don’t have any choice but to remain involved. Advocacy didn’t end when Jim died! Through my involvement with advocacy, I’ve become friends with many people who have early onset dementia, and I care about them and their health. I worry about what the future holds for Alicia, Charley, Tracy, Karen, Bill, David, Lynne and many others. I ache for the caregivers because I know how emotionally and physically challenging their journey will be. I grieve for the man whose wife held his hand and led him from session to session at the Public Policy Forum; the lost look in his eyes haunts me and revives memories of Jim.

Alzheimer’s is a disease, not a normal part of aging. We need to advocate for a cure and for programs to help those living with dementia. It is time we have Alzheimer’s survivors to honor at our Memory Walks!

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