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
www.earlyonset.blogspot.com
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