HIV Celebrity Diagnosis – What’s Changed. What Hasn’t.

On Monday news came out saying that actor Charlie Sheen would be announcing that he had HIV during a TODAY Show interview that would occur on Tuesday. In addition he issued an open letter about his announcement and HIV status.

Thirty years ago I was the Director of Legal Services at the Gay Men’s Health Crisis (GMHC) in New York at the time that Rock Hudson revealed that he was suffering from AIDS.  I was one of the spokespersons for GMHC during the flood of media that resulted with the revelation – interviews that stretched for weeks.

Sixteen years later in 1991 while I was living in Los Angeles, my friend, actor Brad Davis died of AIDS. His diagnosis was revealed with his death, as was my role in his care.  Once again I was doing media interviews, only this time with a personal side to it as well.

A few months later in November, I received a call from a network news producer saying that someone big was coming out with HIV and asking if I knew who it was. I said I did not and in fact, I did not, though I do not think he believed me. A few hours later he called back to say that Magic Johnson was holding a press conference.  In the wake of that one, there were so many subsequent interviews in my role as spokesperson for AIDS Project Los Angeles, I lost my voice.

Since Mr. Sheen’s revelation, I have been struck by a few things – really in how different this was from the others.  Then – Rock Hudson’s diagnosis and death, Brad’s death and Magic Johnson’s announcement all occurred before there were any truly effective treatments for HIV. A diagnosis was widely regarded as terminal. Now -Today, there are at least 7 classes of drugs to treat HIV and 11 combination drugs and the mortality rate has plummeted from the early days of the epidemic.

Then the announcements involved extremely heavy coverage, nationally for the Hudson and Johnson announcement and extensive for the Davis announcement in Los Angeles and in industry publications and the stories were extended for time and in direction – covering multiple angles. Now there was a good deal of media coverage, but the volume and prominence was not what it was in the 1980s and 1990s.

Then – when Rock Hudson was diagnosed, most people did not know a person with AIDS or HIV but his news brought AIDS from the confines of New York, Los Angeles and San Francisco into everyone’s living room. And Magic Johnson expanded that acquaintance even further. Now – people’s familiarity with AIDS and HIV has grown significantly.

But one thing about then – Rock Hudson felt compelled to hide his diagnosis – Brad Davis feared that he would not be able to work again if his were known and asked me to help him get medical care that could keep his secret – then the stigma of HIV was very apparent. But in the story Mr. Sheen revealed to us this week, he stated that he had been blackmailed and extorted since he discovered his HIV status. That tells us one important thing about then and now – something that is not different. Stigma apparently still has great power over a person with HIV – a power that can be crushing. There are over 1,000,000 people with HIV in our country. They have a lot to face. The folks with HIV who came before them have paid a heavy price – and there has been much progress. Stigma should be one aspect of that progress – it should be a bad memory of the early days of the epidemic. It has no place in it today. This should read then there was stigma, now there is not.

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