Wednesday, January 22, 2014

Alzheimer’s Advocates Succeed in Increasing Research Funding

Sometimes being an Alzheimer’s advocate can be frustrating. It seems that our voices of reason often fall on deaf ears. I’ve gone to Washington, D. C., thirteen consecutive times to ask for an increase in funding for Alzheimer’s research.

Successes are the super exciting part of being an advocate. Last week we experienced an unprecedented victory in the battle against Alzheimer’s. The Alzheimer’s Association and more than 600,000 advocates fist pumped when $122 million increase in Alzheimer’s research funding sailed through Congress and was signed by the President.

Alzheimer’s Association CEO, Harry Johns, said these additional resources could “convert scientific opportunity into life-changing outcomes.” Here’s a breakdown of the funding: $100 million for the National Institute on Aging for research, $3.3 million to support caregivers, $4 million to train health professionals on Alzheimer’s issues, $10.5 million to expand home and community based services, and $4.2 million for outreach activities to increase awareness. Another $30 million will be used for brain research that can impact Alzheimer’s and other brain diseases.

Increased funding for Alzheimer’s creates hope for more than five million Americans living with Alzheimer’s disease. An Alzheimer’s cure is possibly the largest single factor toward saving the future of Medicare and Medicaid. Compare these numbers:  Spending on Alzheimer’s research in 2013—$484 Million NIH+$80 million directors’ budget, compared to Medicare spending of $107 billion and Medicaid of $35 billion spent on those with Alzheimer’s disease. Is this a wise use of our money?

I’ve lost a loved one to an Alzheimer’s type of dementia and know it is virtually impossible to describe that decade of loss with mere words. I often try, but saying how it was for us, and how it is for millions now, falls far short of the experience.

The sad thing is that it usually takes a personal experience before a person reaches that level of comprehension. That means another person, another family, another circle of friends offer support and love to ease the inevitable outcome of an incurable, virtually untreatable, disease. A disease that unravels years of accomplishments, skills, hopes and dreams.

An advocate’s job is to keep chipping away at the hope for a cure—to remain unwavering through the ups and downs of being a voice for millions who would have their voices silenced. To continue the battle of education about a disease that is not a joke about cute little old men and women whose forgetfulness makes us laugh. It’s about slamming home the reality that this disease causes pain and heartache for entire families. Families who are often caught off guard by the ugly fact that Alzheimer’s can happen in the best person—in the most brilliant person.

Before this recent increase, the National Institutes of Health estimated that $484 million would be available for Alzheimer’s research funding in 2014. The amount spent on Alzheimer’s research is small compared to billions spent on other diseases. We do not want funding decreased to other major killer diseases, but we want the same success for Alzheimer’s disease. We want to have survivors at our Walks!

copyright © January 2014 by L.S. Fisher 
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