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Celebrity Spokesperson Means Big Bucks for Disease Research

Michael J. Fox, David Hyde Pierce, Julia Roberts, and Katie Couric are just a few of the celebrities who have been known to tug at our heartstrings when they speak on behalf of various diseases and medical needs.

But it's not just our heartstrings that are responding. According to some experts, the luxury of having a celebrity voice on your side creates an impact that can be felt all the way to the bank.

"Jean Smart from 24 was the MC for our gala this year. Last year we raised $1 million, this year we raised $1.4 million plus, and I would argue that the extra money was a direct result of a very heavy celebrity presence at the event this year," says Lou-Ellen Barkan, president and CEO of the Alzheimer's Association New York City chapter.

Other groups, including the National Parkinson Foundation, find the "cause celeb" to be among their most valuable tickets to fund-raising success. Mary Ann Sprinkle, the group's director of development, tells WebMD that for many years the late Bob Hope and his wife Delores, as well as Dick Clark, played major roles in bringing attention not only to the foundation, but to the disease itself.

"Millions of dollars were raised through their efforts --- money that we otherwise would not have known," says Sprinkle.

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The Power of Celebrities

Picking up the ball for a whole new generation is actor Michael J. Fox. His own battle with Parkinson's disease was behind the creation of MichaelJFox.org. It's a fund-raising charity that experts say is making a huge impact on the course of this disease.

"Because of his actions and his voice, every organization involved in Parkinson's disease has benefited," says Sprinkle.

In fact, the power of celebrities can be so great, that an entire foundation has been created to give Hollywood stars even more opportunities to participate.

The group, known as the Entertainment Industry Foundation, (EIF) runs some of the better-known celebrity charities, such as Katie Couric's National Colon Cancer Research Alliance (NCCRA) and Halle Berry's Diabetes Aware Program.

"We help celebrities who want to make a difference accomplish their goals," says Judi Ketcik, vice president of communications for EIF.

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Hollywood and Capitol Hill

One place where you might not expect the celebrity name to carry much weight is on Capitol Hill.

But surprisingly, experts who have attended congressional hearings on disease funding say it is here where the celebrity voices resonate the loudest -- and perhaps accomplish the most.

"When Julia Roberts got up in congress to speak about the rare neurological disorder Rhett syndrome, powerful lawmakers paid attention. And because of her efforts, a disease that otherwise would probably go unrecognized on Capitol Hill got recognized," says medical ethicist Arthur Caplan, PhD, professor of bioethics at the University of Pennsylvania.

He says not only are members of Congress attracted by the media publicity that follows these celebrities up the Hill, he says even high-ranking officials are frequently star struck by Hollywood glitz and glamour -- enough to pay more attention than usual.

Barkan says when actor David Hyde Pierce recently attended a congressional caucus on behalf of the Alzheimer's Association, "Senators and congressmen were standing in line just to shake his hand," she says.

Moreover, when newly diagnosed Alzheimer's patients got up to speak, Barkan says everyone paid more attention, because the actor was standing beside them.

"The voices of these patients were heard with more clarity because he was there to make people pay attention," says Barkan, who adds that it is this kind of concentrated listening that can frequently result in more money designated for research.

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Raising Awareness

But it's not just Congress that's listening -- or responding. Barkan says that when Ronald Reagan came forward about having Alzheimer's disease, it didn't just create a ripple effect. It was, she says, a tidal wave of media interest that carries forward to this day.

Likewise, Ketcik says the impact of Katie Couric's efforts to educate the public about colon cancer had a direct and measurable impact on the nation's health.

"The rate of testing for colon cancer went up by 22%. It translated into saving many lives," says Ketcik.

Janet L. Hieshetter, executive director of the Dystonia Medical Research Foundation (DMRF), says perhaps most important is the celebrity voice that helps patients confront and deal with their own illness.

"For those who currently don't have treatment or aren't seeking treatment, a celebrity stepping forward can make a difference. Regardless of the disease it gives people permission to start talking about it. And that not only increases awareness, ultimately it can also translate into more funding and more research," Hieshetter tells WebMD.

The Ethics of Celebrity Health Campaigns

As powerful and important as the celebrity effect can be, Caplan says involvement is not without its ethical dilemmas. Among the most important, he says, are the grounds on which many celebrities choose the organizations and diseases they represent.

"I believe that some gravitate to only those illnesses perceived as media-friendly -- less embarrassing and stigmatizing -- and that means that many otherwise worthy diseases, some that impact far more people, go unrecognized simply because they have less sex appeal," says Caplan.

But that's not the only issue that can tarnish the celebrity halo. Some say that not all who glitter have a heart of gold.

Indeed, the American Diabetes Association (ADA) reports that one reason they don't routinely use celebrity spokespeople is that too often they simply can't afford to pay the price.

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Maintaining Priorities

"There have been instances where celebrities -- and their agents -- have wanted certain fees to become involved with us, and we just don't have that kind of money. It would mean diverting funds away from something else -- and we won't do that," says Diane Tuncer, director of communications and media for the American Diabetes Association.

Moreover, Tuncer says that the ADA also isn't interested in creating a campaign around a celebrity or their publicity needs -- as some have suggested -- and says it won't change its agenda, even for big-name attention.

"If a celebrity's needs don't fit our priorities, we cannot divert from our focus; the disease and the research must always remain in the spotlight," she says.

Who's Picking Up the Tab? In the name of helping deflect expenses away from some medical charities, pharmaceutical companies frequently volunteer to pick up the celebrity tab -- usually in exchange for a product endorsement. But experts say the ethical issues associated with this practice remain increasingly under fire.

The debate first came to public attention just a few years ago, when the normally reclusive actress Lauren Bacall suddenly became available to the nonpaying morning TV news shows. It was only after appearing on the Today Show -- where she discussed a friend's struggle with macular degeneration and the drug that helped -- was it discovered that her appearance was handsomely underwritten by the drug company Novartis.

Since that time many media news outlets have started shutting doors in the face of celebrities on the payroll of drug companies, even when full disclosure is made.

"It is because celebrities are so powerful and influence so much of our thinking that it is wrong for them to take advantage of our trust by hawking the values of a certain treatment when other treatments, including lifestyle changes, may benefit us more," says Caplan.

So important is this issue, late last year the FDA convened a conference specifically to discuss issues related to celebrities paid by drug companies. Ironically, the meeting was called after what the Boston Globe describes as "months of criticism" from members of Congress and others worried that celebrity endorsements may mislead consumers on the safety and efficacy of some treatments.

The National Parkinson Foundation and The Alzheimer's Association tell WebMD that all their celebrity spokespeople work for free -- and most of the time even assume their own traveling expenses.

The Entertainment Industry Foundation -- whose many programs are sponsored by not only pharmaceutical companies but corporations like Revlon, QVC, People Magazine, Mercedes Benz and Lee Jeans -- insists that its celebrity "ambassadors" work for free as well.

"None of our celebrities are paid -- ever. They all do it from the heart," says Ketcik. However, at least one talent agency -- The American Talent and Celebrity Network -- which represents celebrities like Linda Dano, Meredith Baxter Birney, Naomi Judd, Deborah Norville, Phylicia Rashad, Cokie Roberts, Suzanne Somers, Bob Dole, Paula Zahn, and Katie Couric -- lists fees for their health awareness speaking services ranging from $20,000 to over $100,000 per appearance.

Visit WebMD's Health Center

By Colette Bouchez, reviewed by Louise Chang, MD

SOURCES: Lou-Ellen Barkan, president and CEO of the Alzheimer's Association New York City Chapter. Mary Ann Sprinkle, director of development, National Parkinson Foundation, Miami. Judi Ketcik, vice president for communications, Entertainment Industry Foundation, Studio City, Calif. Janet L. Hieshetter, executive director, Dystonia Medical Research Foundation (DMRF).Arthur Caplan, PhD, professor, bioethics, University of Pennsylvania, Philadelphia; Diane Tuncer, director of communications and media , American Diabetic Association. Peterson, Melody, “Heartfelt Advice, Hefty Fees,” The New York Times, Aug.10, 2002; Brody, Bob, Celebrity Health Campaigns: The Next Generation, Expert View, Ogilvy Public Relations,(New York City; Henderson, Dietdra, “Rise of Celebrity Testimonials Spurs FDA Scrutiny,” Boston Globe, Oct. 30, 2005; All American Talent and Celebrity Network.