Well, the purpose of having a
celebrity spokesperson is to get attention. Having Seth Rogen testify at the
February 26 Senate Appropriations Subcommittee on Labor, Health & Human
Services met that goal. In his opening remarks, Rogen admitted that being
called an expert in something was “cool.” He said, “I don’t know if you know who I am at all. You
told me you never saw Knocked Up, Chairman,
so…it’s a little insulting.” Senator Tom Harkin showed uncharacteristic humor
when he wagered that this was the first time in a congressional hearing that
the words ‘knocked up’ had been heard.
I’ve been to several Senate Hearings
on Alzheimer’s while at the Advocacy Forum in Washington, D.C. I don’t recall
any where the audience was laughing. These are usually deadly serious meetings
about a deadly disease. I can remember one hearing where tissue boxes were
being passed up and down the rows when a young lady testified about familial early-onset
Alzheimer’s. I believe it had to be one of the most tragic stories I had ever
heard. Her entire family had a 50/50 chance of facing the same unrelenting
fatal disease.
I watched the Webcast of the hearing
and although Rogen received the bulk of the media attention, he was not the
only person to testify. Scientists and economists provided extensive testimony
on Alzheimer’s and answered the senators’
questions.
Dr. Richard Hodes (NIH) talked about
research on how a healthy lifestyle could be an intervention for Alzheimer’s.
Although still early in the research process, he recommended diet and exercise
as a way to improve overall health.
One of the people to testify was former
Congressman Dennis Moore. I’ve met Dennis on previous D.C. trips when he joined
Missouri advocates to talk to our Senators. Dennis is a warm, personable man
who has a heartfelt way of connecting with legislators when he speaks about
Alzheimer’s. Seeing one of their own with early onset Alzheimer’s is an
eye-opener for many of them.
Another person who testified, Dr. Michael
Hurd, researcher for the Rand Corporation, talked about the monetary cost of
dementia. The annual cost of dementia in 2010 was $109 billion. When you factor
in informal care, the amount increases to $160-$250 billion. Alzheimer’s is the
most costly disease.
National Institute of Health
Director Dr. Francis Collins who explained the limitation on Alzheimer’s
research was simply funding. Only one in six peer-reviewed research projects
are funded. The brightest minds often research other diseases that are well
funded.
Simply put, our country has not
provided the resources to find a cure for Alzheimer’s. Maybe it’s because
dementia is a disease that still has a stigma—or as Rogen said, “Americans
whisper the word Alzheimer’s, because their government whispers the word
Alzheimer’s.”
Laced in with his humorous remarks,
which is indeed an attention getter, Rogen shared the story of his
mother-in-law who developed early onset Alzheimer’s at fifty-five. By sixty,
she was unable to speak, feed or dress herself. While that image sank in, Rogen
admitted that the dire situation caused him, “a lazy, self-involved, generally
self-medicated man-child to start an entire charity organization.” His Hilarity
for Charity raises money for Alzheimer’s research and for families dealing with
dementia.
Senator Moran began the hearing with
Alzheimer’s information, but I want to leave you with some of his thoughts. Every
68 seconds another American develops Alzheimer’s. In the United States more
than 5.2 million, and 44 million worldwide have the disease. Alzheimer’s is the
sixth leading cause of death in the United States. It has no cure, no
diagnostic test, and no treatment. A Rand Corporation study predicts that
within 30 years the cost of dementia is expected to bypass cancer and heart
disease. Even a five-year delay in the onset, would mean a total savings of $447
billion by 2050. The effort to find effective treatments and a cure causes the
most fiscally conservative and those who are the most caring and compassionate
to come together. Moran said that we need to fully commit to finding a cure in
the next decade. He called finding a
cure “The defining challenge of our generation.” Moran said, “The gift that we all could
provide for every American, for every American family, is a special gift…it is
the gift of hope.”
To watch the hearing:
copyright © March 2014 by L.S.
Fisher
http://earlyonset.blogspot.com
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