A Letter to the President: Sign the National Alzheimer’s Project Act

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure  your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com

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Change the Trajectory of Alzheimer’s

For the past ten years, I’ve joined with other Alzheimer’s advocates to proclaim loud and clear that Alzheimer’s disease will have a detrimental impact on this country’s financial future. We who advocate for Alzheimer’s research and programs sometimes feel neglected. Mega resources are spent on diseases that are better known or understood, or sometimes trendy in the sense that it catches the attention of the media or a popular celebrity.

The first hurtle for Alzheimer’s advocates is to educate legislators, and the American public, that Alzheimer’s isn’t a joke about people getting older and more forgetful. We point out, politely of course, that Alzheimer’s isn’t getting much of the National Institute of Health’s research pie and still far short of the $1 billion goal we had the first year I attended the Public Policy Forum.

The Alzheimer’s Association has just released a report “Changing the Trajectory of Alzheimer’s Disease: A National Imperative.” Research dollars for Alzheimer’s is pushed to the bottom of the list—after all, it affects only elderly people, doesn’t it? It’s just a little forgetfulness, isn’t it? There is medication that slows or stops the progression, don’t you know? The answers to those questions are wrong, wrong, and wrong again.

Alzheimer’s is an incurable brain disorder that brings about brain cell death. It is an economic and emotional hardship on the family when their loved one is diagnosed with dementia. Harry Johns, President and CEO of the Alzheimer’s Association, said, “Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s.”

As advocates, we tell our personal stories and rely on staggering statistics to persuade legislators to allocate more funds to eradicate this devastating disease. Alzheimer’s has forever changed the lives, and dreams of more than five million Americans.

An investment in research now can drastically change the trajectory of Alzheimer’s. Without effective treatment or a cure we can expect the number of people 65 or older with Alzheimer’s to increase from 5.1 million today to 13.5 million by the middle of the century. This is the human tragedy of the disease. Financially, by the time Medicare, Medicaid, medical expenses, and providing care are factored in—Alzheimer’s disease will cost the United States $20 trillion (with a T) over the next forty years.

Of course, the ultimate goal is to find a vaccine to prevent Alzheimer’s or treatment that will cure the disease. Even a five-year delay would reduce the 2050 numbers to 7.7 million instead of the 13.5 million projected to develop the disease.

When Jim developed an Alzheimer’s type of dementia, I learned what an un-funny joke it is. I received the wakeup call informing me that dementia doesn’t just affect the elderly. Jim was only forty-nine when the relentless process began. After ten years, the disease won—just like it has 100% of the time. The only survivors at Memory Walk are the family members who learned that through perseverance, faith, and unconditional love, they can endure the decade or decades leading to the journey’s end.

Has the time come that we need to end our polite request for Alzheimer’s research dollars? Has the time come for us to demonstrate the same perseverance for research that we showed to survive caregiving, or living with a disease without a cure?

A first step is to push for the National Alzheimer’s Project Act. This legislation would develop a national plan through a National Alzheimer’s Project Office. With the combined efforts of stakeholders in the disease—caregivers, people with the disease, providers—and federal government agencies, a comprehensive plan could be devised to address all the issues caused by Alzheimer’s. Not only do we need research so that someday we have survivors, we also need programs for those living with the disease.

Age does not cause Alzheimer’s, but it is the No. 1 risk factor. Without a united effort to find the elusive cure for this disease, those of us who live to be eighty years old will have a fifty percent chance of developing Alzheimer’s. I don’t think it is selfish of me to admit I don’t want to spend the last years of my life with a brain disorder that will rob me of my memories. The time has come to kick our advocacy up a notch to change the trajectory of Alzheimer’s.

copyright (c) May 2010 L. S. Fisher
http://earlyonset.blogspot.com
http://boomerobics.blogspot.com

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