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