When Joan Samuelson first traveled to Capitol Hill to lobby for Parkinson's research funding in 1991, nobody knew or cared much about the disease. The hearing rooms where she testified were small, the turnout spotty. If she was lucky, she'd get to meet with a representative's legislative assistant, who'd say: "I only have 10 minutes--but I'd prefer to wrap it up in five." There was, says Samuelson, "a complete vacuum of awareness."
Cut to last fall, when Samuelson arrived on the Hill with Michael J. Fox on her arm. Those five-minute meetings? Come in, the congressman would say. Stay an hour. When Fox testified, asking for an additional $75 million in research money for Parkinson's this year (they got part of it), the Senate hearing room was mobbed. "The mood was electric," says Samuelson. "Everyone from pages to prominent senators wanted a picture." Next week Samuelson, president of the Parkinson's Action Network, will announce the organization's new name--the Michael J. Fox Foundation for Parkinson's Research. Fox will promote the venture this week in an ABC News "20/20" interview with Diane Sawyer. Star power had put a face on Parkinson's, raising it to a prominence that Samuelson had dreamed about for a decade. "It was obvious," she says, "we'd hit a complete home run."
With its odd mixture of personal tragedy and public promise, the marriage of celebrity and disease has a long tradition. But in today's star-crazed culture, famous spokespeople seem almost mandatory. There are now more medical-research dollars available than ever: the budget of the government-funded National Institutes of Health, the most important source of research money, has doubled in the last decade. And the pockets of private donors have deepened as the economy has boomed. At the same time scientific opportunity has never been greater, propelled by advances in cellular biology and genetics. All of this has sent activists into overdrive. And many have found the secret weapon: celebrities, from old-timers like Mary Tyler Moore to Christopher Reeve and Katie Couric, are "branding" diseases--and hauling in big bucks.
But only for the causes lucky enough to attract them. Diseases without star power struggle for attention, and the whole business of marketing for research dollars has given rise to some perceived inequities. Thanks to Christopher Reeve, spinal-cord injuries--which affect 250,000 Americans--have won great attention, while mass killers like lung cancer and stroke attract relatively less. Last week the American Heart Association sent 270 volunteers to walk the halls of Congress, appealing for more research into the country's leading cause of death. The association relies heavily on its volunteers, but six months ago, it formed a special committee to seek out celebrities with heart problems. "There's some pressure on us to make sure our story gets out," says chairman J. Walter Sinclair.
Is it unfair that certain diseases attract more money just because some politicians want autographs? It's not that simple. AIDS gets more money than other diseases that kill more each year--last year hauling in $1.8 billion, the biggest slice of the NIH's budget. But AIDS's increased funding led to a burst of scientific activity that resulted in the development of breakthrough drugs. And it wasn't just Liz Taylor and Magic Johnson: the passion and energy of AIDS activists also led to their political success. "AIDS is the contemporary model for how a group gets a larger share of the pie," says Morton Kondracke, executive editor of Washington's Roll Call and an advocate for increased research funding. "Organize your community. Get people to visit members of Congress. And if you can, find a movie star who will epitomize the problem."
Using celebrities to raise awareness of diseases has a long tradition. Within six months of launching the March of Dimes campaign in 1938--send your dimes to Roosevelt at the White …