Stars' latest roles: health advocates

Celebrities raising awareness of diseases

August 13, 2005|By David Kohn | David Kohn,SUN STAFF

Since Peter Jennings died of lung cancer Sunday, calls to the American Lung Association's quit-smoking hot line have increased by a third. The number of smokers signing up for the online program has increased by half.

That's no surprise, experts say. Celebrities who contract diseases, or take up the cause for a stricken relative or friend, can make a major difference in public awareness and fundraising.

The phenomenon is known in the trade as the "Couric effect," after Katie Couric, the NBC Today show host whose televised colonoscopy five years ago encouraged thousands to schedule the unpleasant but valuable test for colorectal cancer.

"It certainly has an impact on awareness," said Joyce Oberdorf, director of policy at the Michael J. Fox Foundation, which has raised $55 million for Parkinson's research since its inception five years ago. Fox, a 44-year-old TV and movie actor, has battled Parkinson's since 1991.

At the same time, the disease star system has its drawbacks. Celebrities can spread misinformation, and ailments that lack A- or even B-list luminaries can find themselves missing out on attention and money they might otherwise deserve.

But most in the business agree that a well-known spokesman can be a boon. "The competition for funding is incredibly intense," said Suzanne Coffman, spokeswoman for GuideStar, a nonprofit group that keeps track of U.S. nonprofit groups. "For these organizations, anything that can help them stand out is going to help their cause."

The process is no different from selling soda or sneakers, she says: Celebrities focus attention and attract donors by generating an emotional response from the public.

"It is a branding issue in many ways," she said. "For a lot of people, marketing is a dirty word. But you're trying to let the public know what your mission is."

The link between ailing celebrities and health advocacy groups goes back decades. In the 1970s, Happy Rockefeller, wife of New York Gov. Nelson B. Rockefeller, broke a taboo by announcing that she had breast cancer. At the end of the decade, former first lady Betty Ford went public with her alcohol and drug problems.

Over the years, more and more celebrities have shared their illnesses with the rest of us, boosting awareness and raising money for research and treatment. Two obvious examples: Christopher Reeve, who fought for better spinal cord injury treatments after being paralyzed in a fall, and Tour de France champ and cancer survivor Lance Armstrong, who has offered hope to thousands of other patients.

Advocacy group officials say notables can also raise the morale of fellow sufferers.

"People often feel that no one knows about their disease," said Suzanne Cohen, director of the Dystrophic Epidermolysis Bullosa Research Association, which raises money for a painful genetic, and sometimes fatal, skin disease.

She said famous patients give other sufferers a reference point, a way of making the ailment tangible to everyone else. Her group works with tennis great Mats Wilander, whose son has the condition.

Wayne LeCompte has experienced this boost himself. He has had kidney disease for 16 years; for most of that time he has undergone dialysis three times a week, five hours at a stretch. "It's basically a job," says the 48-year-old, who lives in Northwest Baltimore.

Most of those around him knew little about the disease until NBA star Alonzo Mourning received the same diagnosis in 2000. "You hear a lot about cancer on the television. But how often do you hear about kidney disease?" he says. "When [Mourning] came down with kidney disease, it was big news. I was glad it got thrust onto the front page. If it hadn't, people wouldn't realize how this affects your life."

Several studies have examined what happens when stars focus on an illness. In the most recent, scientists found that there was a 20 percent rise in colonoscopies in the nine months after Couric underwent the test on live TV.

Like most celebrities, Couric had a personal connection to the disease she publicized. Her 42-year-old husband, Jay Monahan, had recently died of colon cancer, and she wanted to publicize the disease and the procedure that can detect it early enough to matter.

"It clearly can make a difference," says University of Iowa researcher Peter Cram, one of the study's authors. "The benefits can be tremendous."

But Cram warns that celebrity involvement doesn't automatically improve public health. He worries that in the aftermath of Jennings' death and the announcement this week from Reeve's wife, Dana, that she too has lung cancer, thousands will rush out for lung cancer screenings.

But these tests are unproven and might produce a significant number of false positives, resulting in unnecessary biopsies and anxiety for many people.

"If the public were to get the message that they should be screened for lung cancer, that would not be an appropriate message," Cram says.

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