Opinion: Arthur Ashe and AIDS: Did the public have the right to know his diagnosis?

Do prominent public figures who are ill have some type of responsibility to reveal their diseases, or are they entitled to the same privacy as “ordinary” people?

That question exploded into the public sphere in April 1992 when tennis star and humanitarian Arthur Ashe learned that a newspaper was about to make public his previously secret diagnosis of AIDS. As CNN airs the documentary “Citizen Ashe” on Sunday, what lessons can be learned from Ashe’s story?

Ashe, who grew up in segregated Richmond, Virginia, became the first Black man to win a major tennis title when he captured the U.S. Open in 1968 at the age of 25. He achieved even more prominence by winning the prestigious Wimbledon tournament in 1975. In the meantime, Ashe was becoming an increasingly vocal opponent of segregation and racism. His measured approach to these complicated problems won him many admirers — and critics.

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Despite his remarkable tennis feats, Ashe was harboring a worsening medical condition: atherosclerotic heart disease, which both of his parents also had at early ages. In 1979, only four years after winning Wimbledon, Ashe had a heart attack and underwent coronary artery bypass surgery. Four years later, when chest pain recurred, he underwent another bypass operation.

Ashe’s tennis career was over but he stayed busy, authoring a multi-volume series entitled “A Hard Road to Glory,” a history of Black American athletes.

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Ashe’s medical problems worsened in 1988 when he had difficulty moving his right hand. A CT scan showed a mass in the left side of his brain and when surgeons removed it the diagnosis was stunning: toxoplasmosis, an uncommon but treatable parasitic infection seen in people who are immunocompromised. Subsequent testing confirmed that Ashe was not only HIV positive but had AIDS, what was then a devastating and incurable disease that had become epidemic in the 1980s.

Doctors quickly realized that Ashe had almost certainly been infected with HIV, the virus that causes AIDS, during his 1983 heart operation, when there weren’t yet tests to check the blood supply for the virus. In the intervening five years, he had developed AIDS.

According to his autobiography “Days of Grace,” co-written with Arnold Rampersad, the ever pragmatic Ashe responded “Aha!” upon learning the diagnosis. There was nothing for him to do about his maladies “except to treat them according to the most expert medical science available to me.”

But there was a larger issue at hand: Would Ashe go public with his news?

At the time, being diagnosed with AIDS was profoundly stigmatizing. The earliest cases of the disease predominantly affected gay men, who got infected through unprotected sex. The so-called gay plague caused weight loss, unusual infections due to an immunocompromised state, and, almost always, death. Rates of the disease were also especially high among injection drug users, which only added to the stigma of having AIDS.

Ultimately, Ashe chose to stay quiet, confiding in only a small number of family members and friends. His main reason for doing so, his wife Jeanne Moutoussamy-Ashe told me, was to protect her and their young daughter, Camera, not wanting to add to the burden that his illness was already causing in their lives. According to Moutoussamy-Ashe, her husband expected that he would go public at some point. He was able to deflect concerns about his weight loss by blaming it on his heart disease.

But on April 7, 1992, everything changed. Doug Smith, a tennis writer at USA Today and a friend of Ashe, asked to visit. During their conversation, an uncomfortable Smith dropped the bomb: His newspaper had gotten a tip that Ashe was HIV positive. “Is it true?” Smith asked.

“I try hard to keep calm and subdued at all times,” Ashe later wrote in his autobiography. “But the anger was building in me that this newspaper, any newspaper or any part of the media, could think that it had the right to tell the world that I had AIDS.”

He eventually answered, “Could be.”

Ashe and his wife decided that if he was forced to go public, at least it would be on his own terms. In a powerful press conference held in New York City the next day, after joking that he was becoming the new manager of the New York Yankees, Ashe laid out his whole medical history, as well as his earlier decision to keep quiet.

Not surprisingly, public opinion was split on the issue. Time columnist Lance Morrow chided his colleagues for treating Ashe’s story as “juicy gossip” and “red meat.” “There was no public need to know, or right to know,” he wrote. USA Today editor Peter Pritchard pushed back in an April 13, 1992, editorial, arguing that “Journalists serve the public by reporting news, not hiding it.”

Another wave of criticism came from commentators who believed that, by maintaining his silence, Ashe had let down the Black community, which by the early 1990s was increasingly being ravaged by AIDS. Couldn’t Ashe have saved lives if he had announced his diagnosis in 1988? Once his diagnosis was known, Ashe certainly tried to do so, making a large number of public appearances, calling for increased funding for AIDS research — especially in Black populations — and destigmatization of the disease. Sadly, Ashe died of AIDS in February 1993.

The outing of Arthur Ashe’s AIDS diagnosis did not solve the issue of whether the public has the right to know when famous people become ill. To be sure, modern celebrities, in the era of the Internet, often choose go public themselves. Michael J. Fox, who has had Parkinson’s disease since 1991, is a typical example. Other celebrities, such as Chadwick Boseman, who died of colon cancer in 2020, manage to keep things secret. There are also still occasional outings, such as with Senator Dianne Feinstein (D-Calif.), whose apparent diagnosis of dementia has become public knowledge without her saying so. Of course, it can be argued that politicians, as elected officials, should be required to disclose life-altering illnesses.

But what about famous — but private — citizens like Arthur Ashe? I think the answer remains “No,” that they should be entitled to their privacy. Ashe himself said it best on NBC’s Today show when it was suggested he should have gone public sooner: “I will responsibly get involved the way I see fit.”

Barron H. Lerner is a professor of medicine and population health at NYU Langone Health and the author of five books on medical history, including “When Illness Goes Public: Celebrity Patients and How We Look at Medicine” (Johns Hopkins University Press, 2006).

Source: STAT