Famous Patients, and the Lessons They Teach: New York Times

By BARRON H. LERNER, M.D.

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MICHAEL J. FOX Like Lance Armstrong, the actor started a foundation to raise money for and awareness of the disease he was facing, Parkinson’s.

Matt Houston/Associated Press
LANCE ARMSTRONG He learned in 1996 that he had testicular cancer. After a complete recovery, he won the Tour de France seven times.

RITA HAYWORTH Ms. Hayworth had acting jobs even while in the early stages of Alzheimer’s. Her doctors just thought she was forgetful.
Readers of the March 29, 2004, issue of The Star, a weekly tabloid devoted to celebrities, learned that the actor Michael J. Fox had experienced a “miracle recovery” from his Parkinson’s disease.

But had he? Evidently not, given Mr. Fox’s recent appearances in political ads, in which his disease seemed quite active.

Mr. Fox is only one of countless celebrity patients now associated with various diseases. What lessons do these cases teach the public? Are we misguided in relying on celebrities when we become sick?

Mr. Fox’s story resembles those of other famous patients. He was a well-known television and movie star when he received a diagnosis of Parkinson’s at the young age of 29. He eventually went public with the diagnosis and started a foundation to educate the public and raise money for scientific research.

Yet as the article in The Star shows, information about Mr. Fox’s condition is subject to distortion. And patients may mistakenly believe that they should simply emulate what sick celebrities do, even imitating treatments that may not be appropriate. As one woman with Parkinson’s, who appeared on “The Oprah Winfrey Show” with Mr. Fox in 2002, said, “I just tried to follow right behind him and step in the footprints.” At times, patients have unwittingly become the symbols of a disease. In 1981, newspapers announced that the actress Rita Hayworth had Alzheimer’s. Although the illness was described in 1906 by a German physician, Dr. Alois Alzheimer, by the 1980s it had been largely forgotten. Ms. Hayworth had been extremely forgetful as far back as the early 1970s, and her doctors mistakenly believed they were witnessing the effects of lifelong alcoholism.

Ms. Hayworth’s agent continued to get her acting jobs, like an appearance on “The Carol Burnett Show” in 1971. What was most remarkable about this performance — which included a charming duet, “Mutual Admiration Society,” sung with her host — was that even in hindsight, it is impossible to tell that Ms. Hayworth had any problems at all. She was being fed her lines off stage, but she never let on.

As a result, Americans learned an important lesson about Alzheimer’s when Ms. Hayworth’s diagnosis became known: people in the early stages of the disease exist in a variable zone, in which they can alternately seem normal or utterly confused.

Ms. Hayworth’s daughter, Princess Yasmin Aga Khan, agreed to let her mother’s image be used to publicize Alzheimer’s. Once again, a famous face became a way to raise millions of dollars.

Some people have become famous patients reluctantly. In the late 1980s, Elizabeth Glaser, the wife of the actor Paul Michael Glaser, developed AIDS from blood transfusions she had received after giving birth to her elder child, Ariel. Ariel was infected with H.I.V. through breast milk; her brother, Jake, was infected in utero, before Ms. Glaser knew her condition.

Ms. Glaser quietly began the Pediatric AIDS Foundation, but she did not announce that she had the disease. When a tabloid called the Glasers in 1989 and told them that an article was imminent, they decided to go public. A previously unknown person thus became a celebrity patient.

Ms. Glaser’s defining moment came at the 1992 Democratic National Convention, when she movingly discussed what H.I.V. had done to her family and how the Reagan administration had not devoted enough money to AIDS. Both Elizabeth and Ariel Glaser died from AIDS, but Jake, whose life his mother had vowed to save when she started the foundation, is alive and well at age 21.

Of course, not all celebrities are entirely altruistic. A scandal emerged in 2002 when it became known that some stars were promoting various treatments on talk shows without revealing that they were being paid by drug companies. Another concern is that celebrities have too much say in dictating how Congress allots research money.

Perhaps the most vivid story of a famous patient is that of Lorenzo Odone, who developed a fatal neurological disorder, adrenoleukodystrophy, in 1983 at age 5.

Told by Lorenzo’s doctors there was little to be done, his parents, Augusto and Michaela Odone, began a relentless search for a substance to cure or prevent the disease.

By 1987, they had developed Lorenzo’s oil, a mixture of two cooking oils. The Odones’ story was celebrated in the 1992 movie “Lorenzo’s Oil,” which strongly praised the oil before definitive data became available. Hollywood was criticized for raising false hopes.

But the Odones were ultimately proved correct. While the oil cannot cure the disease, it can prevent its onset in boys predisposed to it. Lorenzo is still alive.

Despite the striking triumphs of the Odones and the cyclist Lance Armstrong, who defeated testicular cancer, the best advice for those who visit the Web sites of famous people to learn about diseases is still caveat emptor. What is true for celebrities may not be true for their fellow patients.MORE: New York Times