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Treating Disease With a Famous Face

By ALEX KUCZYNSKI

NY Times, December 15, 2002

 

Associated Press

CELEBRITY RX Lynda Carter on "Talk IBS."

A publicist from a big agency with corporate clients called on a hunch.

"This might be a long shot," she said. "But this is the hot new disease."

Everybody who is anybody has I.B.S., she said, rattling off names: a comedian, an actress, a celebrity couple. Even John F. Kennedy, whose diagnosis was just made, posthumously.

And I.B.S. stands for?

"Irritable bowel syndrome," the publicist said. Lynda Carter — an actress perhaps best remembered as Wonder Woman in the 1970's — was to be the new celebrity spokeswoman for the syndrome.

And so a few days later, there was Ms. Carter, addressing a luncheon at a Midtown Manhattan hotel about, well, constipation. "Sometimes people go two, three, four days, without. . . ." she said, then squeezed a toothy, anxious smile onto her face.

An expectant silence followed. Ms. Carter, who as a superheroine wore golden wristlets that magically deflected bullets, coughed and sallied forth.

"I mean, if Bob Dole can talk about his penis. . . ." she added, sounding helpful.

She was right, of course. In America, there is scarcely any disorder, no matter how lowly, that has not had its image enhanced thanks to a celebrity spokesman. Anemia and its cures have been championed by Danny Glover, rheumatoid arthritis by Kathleen Turner and bladder control by Debbie Reynolds. Rare syndromes have found spokesmen in Ben Affleck (ataxia-telangiectasia) and Rob Lowe (febrile neutropenia).

The public does not always understand that many of these celebrity champions are paid players in the marketing strategies of pharmaceutical companies, who pull the strings to make them dance before the public and news media. Ms. Carter is on the payroll of the Novartis Pharmaceuticals Corporation, which markets an I.B.S. drug. Mr. Dole, of course, was hired by the maker of Viagra.

While attaching a celebrity to a disease can motivate sufferers to seek treatment or lead to more research financing, the arrangements are ethically complicated, medical experts say. Last summer, CNN and ABC adopted polices to assure that viewers are told of celebrities' ties to drug companies after stars like Ms. Turner and Lauren Bacall spoke of their ailments on news programs without mentioning they were paid.

Despite the networks' bearing down, the practice continues and the relationship between stars and sickness has evolved further, affecting both the public's perceptions of treatment and financing for research. Dr. Arthur Caplan, the director of the Center for Bioethics at the University of Pennsylvania, said the relationship between celebrities and disease has become so cozy that he is now supervising a study of the impact on drug sales and public health.

The celebrity-disease partnership is a natural, if undesirable, signal of the continuing transformation of health care from a profession run by doctors and scientists to one run by marketers, he said.

"We have handed it off to the M.B.A.'s, who in positioning competing companies say, `Hey I remember that marketing class I took at Wharton; I bet we can get a leg up with a celebrity,' " Dr. Caplan said. "If Swifty Lazar had called up pharmaceutical companies 20 years ago and said: `Hey, I've got a stable of celebrities; want some?' the pharmaceutical companies would have looked at him as if he were completely insane."

If Swifty Lazar, the legendary Hollywood talent agent, were alive today, he might be Barry M. Greenberg, the chairman of Celebrity Connection, a Los Angeles firm that specializes in hooking up Hollywood stars with pharmaceutical companies. Mr. Greenberg maintained that any celebrity, no matter how famous, is available to endorse a drug for almost any disease, no matter how unpleasant, for a price.

"The joke around here is, `If someone is willing to pay off the debt of the Vatican Bank, I can get the pope to do a commercial for them,' " he said.

Amy Doner Schachtel, the president of Premier Entertainment Consulting, which competes with Mr. Greenberg's firm, arranged the marriage between Ms. Carter and Novartis.

She would not say how much Ms. Carter was paid, but fees for similar alliances can range from tens of thousands of dollars to $1 million, said Ms. Doner Schachtel, who has helped arrange paid deals for Mr. Lowe and Mr. Glover.

"Sometimes they are paid for a one-day appearance and sometimes they are paid for 20 days over the course of a year," Ms. Doner Schachtel said. "So the fees obviously vary."

Ms. Doner Schachtel, who has been linking celebrities with drug companies since 1996, maintains a database of stars and diseases. In the case of Ms. Carter, she spent months calling agents before finding a celebrity with a suitable connection to irritable bowel syndrome; Ms. Carter's mother has I.B.S.

During Ms. Carter's New York luncheon, attended mostly by members of the press, she said at least three times, "I am not promoting any specific drug."

But it was a problematic notion. Although Ms. Carter did not mention a drug by name, she discussed a specific kind of I.B.S. — I.B.S. with constipation in women patients — for which the only drug on the market, Zelnorm, is made by Novartis. (I.B.S. is defined by gastroenterologists as a collection of symptoms that includes abdominal discomfort, like bloating and gas, with either diarrhea or constipation, or an alternation of the two.)

Gregory Baird, the vice president for communications of Novartis, saw nothing wrong in the use of celebrities to market health care. "In the end, I think we're better if we can still find the Lynda Carters of the world who can say, `Women, here is permission to talk about what you have,' " he said.

Dr. Lawrence J. Brandt, the chief of gastroenterology at Montefiore Medical Center, said that Zelnorm relieves symptoms of constipation-predominant I.B.S., but that it should be prescribed only for women. Too few men were included in the clinical trials to determine its effectiveness, he said, adding, "It's a good drug."

Celebrity affiliation can, at times, attract much needed attention. Katie Couric, the co-host of "Today," has helped to raise about $20 million for colon cancer research since the death of her husband, Jay Monahan, in 1998. She has done so without remuneration from a corporate partner.

However, even when stars are not paid, their association with a medical condition might not always be in the public's best interest, said Jeff Stier, the associate director of the American Council on Science and Health, a nonprofit organization that studies public health and financing issues. Mr. Stier pointed out that Julia Roberts testified in May before the House Subcommittee on Labor, Health and Human Services Appropriations about Rett syndrome, a developmental disorder that occurs most often in infant girls, leaving them unable to control their movements. Ms. Roberts, who was invited to testify by Representative Steny H. Hoyer of Maryland, had befriended a young girl who suffered from the disease and later died.

The actress asked the subcommittee for $15 million for the National Institutes of Health for research, five times current financing. The institute's decision has been delayed until January, said Kathryn Kissam, a spokeswoman for the International Rett Syndrome Association.

While Ms. Roberts may have brought attention to a rare disease — and donations from CNN and C-Span viewers who might not have otherwise heard of Rett syndrome — the money might have been better directed to a more common illness, Mr. Stier said.

"My underlying view is that when celebrities give of their time, that is always a good thing," he said. "However, I am concerned that all too often, because of the way our political system and our society work, that celebrities sometimes play too great a role in directing limited resources for public health."

Dr. Caplan, the medical ethicist, is supervising a study of celebrities' impact on research financing and consumer drug use.

Celebrities, he said, often want to raise money for so-called orphan diseases. "And that is wonderful," he said. "But the science may not yet be there to treat a certain form of Alzheimer's in quite the same way it is there to treat, say, diarrhea in third-world Africa."

"You could save a lot of lives with simple vaccinations, with oral rehydration in Africa," he continued. "But the celebrity fund-raisers don't care. It is not wrong to raise that money. But someone on the political or foundation or even university side ought to say, `Thank you, Mr. Celebrity, and you ought to give us a little discretion.' "

Ms. Doner Schachtel said: "People can be skeptical of the celebrity angle. But the reality is that Americans listen to celebrities, not the medical expert who is unknown to them. How else are you going to get the word out so effectively on public health issues?"

Yet there is always the risk that celebrities' endorsements will backfire. Two years ago, Ms. Doner Schachtel found an earlier spokeswoman for I.B.S., Camille Grammer, the wife of Kelsey Grammer of "Frasier."

Appearing on "Today" two years ago with his wife and discussing her I.B.S. condition, Mr. Grammer said, "We can't basically make a lot of plans because you never know when an episode might come on."

At the time, the Grammers were being paid by Glaxo Wellcome as part of a public awareness campaign. Later that year, the company brought out an I.B.S. drug, Lotronex. But it was withdrawn from the market in November 2000 after being linked to severe gastrointestinal side effects and patient deaths.

Last month, the drug's maker, now GlaxoSmithKline, reintroduced Lotronex, which is specifically for women with diarrhea-predominant I.B.S., with restrictions.

Ramona DuBose, a spokeswoman for the company, said that the Grammers had been paid by the company, but that they were not recommending any drug treatments at the time. "Theirs was an effort to raise public awareness," Ms. DuBose said.

And as long as bowels are irritable, it appears that there will always be a celebrity to spearhead the cause. No disease has a stigma so severe that it cannot be overcome by compensation, said Mr. Greenberg of Celebrity Connection.

"There are some things that are yucky and problematic, like eczema and seborrhea," he said. "But there are other things that we thought were taboos that our former presidential candidate waded right into. And celebrities will do anything if the price is right." He paused thoughtfully, then added: "Do you know any celebrities? Some of them are poor."

Mr. Greenberg said he could only think of one disease that would be difficult to pair with an eager celebrity.

"I don't think we'll see genital warts in my lifetime," Mr. Greenberg said.

And I.B.S. stands for?

 


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