Wednesday, Jul 9, 2008
Celebrities speaking out about their afflictions can raise awareness and money.
Nov 29, 1999 | Celebrity is a fleeting thing, fragile and impermanent. And health, like elusive fame, can vanish in an instant, leaving the subject weakened and bereft. Stardom and illness have united in banquet halls and the halls of Congress to raise money for and awareness of everything from Alzheimer's to osteoporosis. Disease-stricken celebrities have put a familiar face on infirmities that otherwise hovered below the high-profile funding radar.
Until recently, for instance, Parkinson's disease was just a shaky blip in the National Institutes of Health's budget, despite the more than 1 million victims of the neurological illness. In 1998, the NIH research funding for Parkinson's was $41 million (or $41 per person afflicted), compared with the more than $1,600 per person that is being spent to find a cure for the 980,000 citizens currently infected with HIV. Cancer, in its various forms, afflicts 8 million in the United States; as of 1998, cancer research receives $368 per person.
But the way the NIH's budgetary pie is sliced may be changed by the presence of Doc Hollywood: Michael J. Fox. For eight years, Fox -- who jump-started his career in the "Back to the Future" movies and currently stars in the ABC sitcom "Spin City" -- hid his Parkinson's disease from the public, passing off the tremors as Lyme disease or fatigue. When he finally came out, sufferers of Parkinson's breathed a sigh of relief. Maybe with a star on board, they could get the notice they needed to help increase the funding for treatment and research.
On Sept. 28, 1999, an impassioned Fox spoke before Sen. Arlen Specter and the Senate appropriations subcommittee. "What celebrity has given me is the opportunity to raise the visibility of Parkinson's disease and focus attention on the desperate need for more research dollars," declared Fox. "I was shocked and frustrated to learn the amount of funding for Parkinson's disease is so meager. Compared with the amount of federal funding going to other diseases, research funding for Parkinson's disease lags far behind." When members of the Parkinson's Action Network (PAN) had spoke before the House Appropriations Committee, almost half the seats were empty. But when Fox appeared, the House was full.
Fox wasn't the first celebrity to stump before Congress in the hope that a disease that afflicted them or loved ones would be awarded an increase in federal funding. After viewing videotaped testimony from actor Christopher Reeve, the Senate Health Committee in March approved a $1 surcharge on motor vehicle fines to pay for spinal cord research. Reeve, who was traveling and unable to appear in person, told lawmakers that the surcharge would raise more than $2.6 million a year for spinal cord research.
And then there was the appearance of the glamorous Elizabeth Taylor, who spoke out poignantly for HIV and AIDS research dollars. Her pleas were bolstered by the work of AIDS activists like the group Act-Up, who took to the streets, marching and disrupting political meetings. The dividend: well over a billion and a half dollars of NIH money distributed in 1998. And the fact that famous fixtures like Rock Hudson, tennis star Arthur Ashe and Robert (Mike Brady of "The Brady Bunch") Reed had died of AIDS -- or that basketball star Magic Johnson has the disease -- didn't hurt when it came to opening the federal pocketbook.
But celebrities are just part of the whole lobbying strategy. As PAN's Michael Claeys points out, stars cannot do it by themselves. "The impact a celebrity has for one disease or another does help to make the issue more real. It's helpful, but not the whole package," he explains.
The grass-roots package includes letter writing, visits by non-stars to Washington to meet with office holders and continued pressure by constituents on their elected officials, which in the case of Act-Up was substantial. Famous folk are just the icing on the cake -- but if fans get motivated behind a star and lobby Congress, more government dollars might be dropped on that celebrity's favorite cause.
"If you're not the squeaky wheel, you're not getting the funding," says Parkinson's Action Network's Phyllis Rosenfeld. To that end, actors and others with illnesses have been trotting down the red carpet to meet and greet the press and Congress.
The executive director of the Autism Society of Los Angeles, Frank Paradise, has worked for a variety of fund-raising agencies over the past 25 years, including AIDS Project Los Angeles. He explains, "Actors traditionally never really could be used to promote fund-raising, until the entertainers [like Elton John] came out to do concerts. That was the forum for actors to come out and speak." But, he continues, there is still some hesitation. "It's real easy for celebrities to come out for a disease when their friends are touched. It's a harder pull when it comes close to home. 'My mother or my aunt has it, but I won't say I have had a mastectomy toward helping breast cancer research,' is the commonly held position."
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