The Celebrity of Disease
USNews.com
By Josh Fischman
Posted Sunday, November 5, 2006
Lou Gehrig was the first, and gave his name to a disease. Michael J. Fox is the latest, and gave his endorsement to politicians pushing research into his Parkinson's. Sick celebrities have become more than fodder for supermarket tabloids. They have helped shape modern medicine and how we view our own health, argues Barron Lerner, a physician and historian at Columbia University, in his new book, When Illness Goes Public (Johns Hopkins University Press). "Celebrities influence fashion, and celebrities who are ill teach us how to be patients," he says. "Because of their stature they have tremendous power." The public has learned from people like John Foster Dulles, Steve McQueen, Arthur Ashe, and Lance Armstrong that the best patients heroically do battle with disease and that it's better to question your doctors. But there's a downside: Celebrities who embrace questionable cures can mislead millions of people.
Why are sick celebrities so important to other sick people?
There's a sense that celebrities have access to the best care and that you'd be wise to do what they did. Would that work for me, people wonder? Lance Armstrong says that people write to him asking about everything he did and ate while fighting testicular cancer.
So they are role models?
Definitely. This whole business of battling your disease, well, Lou Gehrig was practically a template for it. When doctors at the Mayo Clinic finally figured out he had amyotrophic lateral sclerosis, he worked with them, following all their suggestions, even for experimental medicine, like vitamin treatments. This was covered heavily in newspapers in 1939, so people reading learned about the value of clinical trials. Even though he died, the lesson was that you do your best and you go out like a hero.
Is that what really happened?
The reality was that it sucked. Gehrig's wife described his last days as bedbound and immobile. Every breath must have been a struggle. But that wasn't covered in the papers. Instead, we got the heroic death in the movie The Pride of the Yankees.
So the fighter is a bad model?
It's a balance. Patients want to believe they can battle disease, and there's no doubt that optimism helps them, and so does fortitude. But there are many people who fight and don't win. Implying that patients who fight harder always do better is not necessarily true. And those who get sicker may blame themselves for not trying hard enough. Adding guilt to suffering is a terrible burden.
John Foster Dulles also fought and lost.
Yes, and people said he fought his colon cancer in 1956 as tenaciously as he fought communism. But one important thing Dulles did was bring cancer out of the closet. No one even liked using the word. But Dulles made a public statement, talked about what his doctors were doing, and went back to work.
So taking the stigma away from disease is a good thing that celebrities do?
Arthur Ashe did it for AIDS. Ashe had terrible luck. A heart attack forced him to quit tennis. Transfusions during the surgery were probably how he got HIV. When he went public in 1992, he showed the disease wasn't all about gays and weirdos. Remember, even doctors were scared of AIDS patients at the time. Ashe gave a commencement address at Harvard Medical School and said, "Some of you graduating today wouldn't treat me if I came to you." He brought an incredible dignity to discussions of the disease and what it was doing to society.
Doctor-patient relationships have also been changed, right?
People like Gehrig and Dulles followed doctors' orders. But by the 1970s, we were embroiled in Vietnam, and everyone was questioning authority. So when Morris Abram, the civil rights lawyer, challenged his doctors on his leukemia treatment and credited his survival to his own advocacy, it gave a big boost to patient empowerment. And when Steve McQueen told his doctors they were wrong and he could beat his mesothelioma (a type of lung cancer) with alternative treatments in Mexico, that made big news. McQueen was wrong-the treatments didn't help-but gave a higher profile to alternative medicine.
Are we now seeing an evolution of activist patients as Michael J. Fox does ads for political candidates?
Where Fox differs is that other advocates have tried to get bipartisan support for research funding. But stem cell research falls on one side of the aisle, so that's where he went. My sense is he's not doing these commercials for candidates in Missouri and Maryland as a Democrat but as a desperate patient. And they are incredibly powerful, when you see him bobbing and twitching on the TV screen. I actually think that's what disturbed Rush Limbaugh-we don't usually see public symptoms like this. But since they are so powerful, I think we'll see more like this in the future.