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Abigail E. Disney

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A Commitment to Alzheimer's

Posted: 02/ 7/2012 8:40 pm

Right now, more than five million Americans are suffering from Alzheimer's Disease. And when I use the word "suffering" I know what I am talking about. Last Friday, I watched my mother take her last labored breath after years of anguish, humiliation, physical pain and mental misery. In six years I saw the disease reduce her from a vivacious, funny pain-in-my-rear-end to a drooling, incoherent puddle. It may sound cruel, but it's only the truth; every so often someone would observe that it was as though she were dissolving right before our eyes.

Today the Obama administration announced a two year commitment of $156 million to fighting Alzheimer's Disease, which is very good news. Without a significant commitment of funds and energy to research for a cure for this unspeakably cruel disease we will see the number of Alzheimer's patients balloon to a staggering 16 million by 2050. There are currently 15 million caregivers providing over 17 billion hours of unpaid care to Alzheimer's patients; that number of caregivers will need to grow to 45 million or more in the same time frame in order to care for those afflicted. And believe me, each one of those 150 billion unpaid hours of care will feel like an agonizing lifetime to those giving it.

It doesn't take much to see that the cost to our country will be vast unless we can stem the tide. In 2011 the cost of care for Alzheimer's patients was $183 billion and it will rise to over $1 trillion within the next few decades, wreaking havoc on families and a health care system that will be already shuddering under the weight of the medical demands of an aging population.

However, speaking of financial costs feels to me beside the point to me at this moment, having just watched the way this disease took my mother. I don't know how long it will take for my family to climb out from under the feeling of powerlessness and sorrow that now weighs down our hearts, but at least we were in a financial position to ensure that our mother was well cared-for right to the end. I cannot imagine the agony we would have felt if money had been an obstacle to her care, as it is for so many families. I cannot imagine what it would be like to pick my head up from my pillow one sad, sad morning, and start the work of digging out from under a financial hole made by the demands of doing the right thing by the woman who brought us into this world.

Alzheimer's is the sixth leading cause of death in the United States and it is the only disease among the top ten for which there is no way to cure, prevent or even slow its progression. The suffering of patients and caregivers promises to balloon and even overwhelm us without a steadfast commitment to finding the secret to mitigating this horrible disease.

Last year both houses of Congress unanimously passed and the president signed the National Alzheimer's Plan for Action (NAPA). This was a huge victory for Alzheimer's advocates and today's announcement is a sign that the Obama administration is serious about turning the dream of NAPA into a reality. But quite honestly, it is not enough. We cannot rest until there is coherent a national plan to coordinate and evaluate all national efforts in Alzheimer's research, clinical care, community and home-based programs as well as outcomes from those programs.

Long ago my mother loved a poem by Seamus Heaney: "History says, Don't hope on this side of the grave. But then, once in a lifetime the longed for tidal wave of justice can rise up, and hope and history rhyme. So hope for a great sea-change.... Believe that a further shore is reachable from here. Believe in miracles and cures and healing wells." That's how she taught me to live, back when she could talk. And that's how I believe we can make a better future for those millions and their loved ones who will face the prospect of this hideous diagnosis.
Commit. Believe. Love. Lead. That's what we need from you, Mr. President. Hope and history can rhyme, but only if we continue to push for treatments, for better and fairer care, and yes, even for a cure.