Stars, Money And Medical Crusades

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 House, please--comedian Eddie Cantor had raked in $1.8 million to help beat polio. Gregory Peck did ads for the American Cancer Society in the 1960s. "You can fight it in two ways," he told the country, "with a checkup and a check." After Betty Ford went public with her breast cancer in 1974, there was what Fran Visco, head of the National Breast Cancer Coalition, calls the "Betty Ford jump"--more cases diagnosed after women began streaming into doctors' offices for mammograms. And this month men in New York signed up in droves for prostate exams after Mayor Rudolph Giuliani announced he had cancer.

Public awareness can also give a boost to private fund-raising--the circuit of pledge drives, fashion shows and black-tie dinners that have become a critical source of funding for medical research. Every disease group knows that the big government money tends to go to scientists with track records and published studies. Young risk-takers in lab coats rely on funding from nongovernment sources. And the foundations are eager to provide it, hoping that one of them might score a breakthrough. The breast-cancer drug Herceptin, for example, was developed by Dr. Dennis Slamon, who won the attention of Lily Tartikoff, wife of the late TV executive Brandon Tartikoff. Her star-studded Hollywood money-raising events helped fund his research. Since 1984 Mary Tyler Moore has helped boost the Juvenile Diabetes Foundation International's research budget from $3 million to $75 million. Pre-Christopher Reeve, the American Paralysis Association netted about $500,000 at its annual gala. Last fall the group, now known as the Christopher Reeve Paralysis Foundation, raised close to $2 million.

But more important than throwing banquets is climbing up the Capitol steps. This year the NIH and its 21 institutes will divvy up $18 billion to researchers studying hundreds of diseases across the country--money allocated wholly by Congress. Officially, committee chairmen have clamped down on the practice of earmarking funds for specific diseases. But politicians still do send the budget off with a set of written operating instructions that carry great influence. "We tell them what we're interested in, whether it be more research on Parkinson's or prostate cancer or breast cancer, in the strongest terms we can come up with," says U.S. Rep. John Porter, chairman of the House subcommittee that oversees health appropriations. And even though NIH scientists ultimately make the decisions, "everyone at NIH pays close attention," says Dr. Gerald Fischbach, director of the NIH's Institute of Neurological Disorders and Stroke.

Winning over politicians, of course, is an art form. Targeting the congressman whose mother has Alzheimer's or the senator who survived prostate cancer certainly helps. But a savvy blend of hard-core advocacy and Hollywood face time has proved essential. Breast-cancer crusaders worked the system with walks, rallies, lobbying, pink ribbons and an all-important string of stars: Harrison Ford, Rosie O'Donnell, Julianne Moore. "A lot of foundations raise money," says breast-cancer advocate Visco, "but we decided we wanted to go for the big bucks." Since they started in 1991, NBCC has helped catapult NIH funding from less than $100 million to $475 million last year, making breast-cancer research the second largest recipient of such funds behind AIDS. Visco says she'd welcome even more Hollywood faces. "Susan Sarandon has offered to work with us," she says, "and the first time I can, I shall ask her to come to Washington."

Certainly, no one would argue that funding research for a disease that afflicts so many women is a bad thing. But compare that to the struggles of hundreds of diseases that have no celebrity heat. Audrey Lewis, head of Families of Spinal Muscular Atrophy, thinks about it all the time: "That would be so nice if we could get one." Lewis says she's written plenty of letters to famous people since she founded the group in 1984 and she will never give up hope. But so far, no luck. Instead, she says, "you try to come up with ideas that will put you on the map." Lewis and her family, including her 17-year-old son who suffers from SMA, have climbed a mountain in Colorado and walked across the state of Illinois in the rain. "We raised $2,000 and a little bit of attention," she says. Last March, Tom Duffy, the father of a 9-year-old with the disease, sat on a billboard (beep if you care! fight spinal muscular atrophy now!) for 24 hours in Scranton, Pa. The stunt managed to raise $28,000--but it was far from Hollywood. "Hopefully, people in this valley will know what spinal muscular atrophy is," Duffy told a local newspaper after climbing down.

Duffy is classy about it, but for an advocate like him, it must be hard not to envy the way high-profile diseases have cornered the NIH market. Even though the NIH budget has soared in recent years, the institutes can fund only one third of the research proposals they receive. In response, many groups are trying to enlarge overall government funding so they won't have to fight over dividing it. Hundreds of disease groups, buoyed by star spokespersons Moore and Reeve, have lobbied Congress to double the budget by the year 2003, and for the past two years are well on their way to achieving the goal. "The answer is not to steal," says Kondracke, whose wife suffers from Parkinson's, "but to increase the pie."

Reeve and Moore, and now Fox, have been compelling advocates for reasons that are out of their hands: they all struggle with the diseases they push for. They've read up on the science and all have a personal and passionate interest in seeing results. But the motives of other stars aren't always as pure. "I get calls all the time from publicists saying, 'Find me a charity. Any charity will do'," says Barry M. Greenberg, head of Celebrity Connection in Los Angeles, which links Hollywood stars with causes. "I ask what sort of things they're interested in and they say, 'Whatever.' They are just looking for publicity."

Michael J. Fox is, too--but to stop a disease that's slowly taken over his life. The science is there and a cure, he believes, fully attainable. All Parkinson's needs is more money--and a dose of stardust to help get it. "It's not for effect, and it's not as a circus performer," he says. It's for 1 million others with Parkinson's disease.

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