When a famous person comes out as HIV-positive, the story is not just about them, and it’s not just about HIV. It's also about the millions of people living with HIV.
By
Paul Kidd

18 Nov 2015 - 8:43 AM  UPDATED 18 Nov 2015 - 9:44 AM

I’ve never been a fan of Charlie Sheen - I always thought his brother was better looking, and his father was a better actor. But today, Charlie Sheen is in all our faces and on all our screens, and for the first time I feel like I have something in common with him.

Like Charlie Sheen, I have used a lot of drugs. Like Charlie Sheen, I have had a lot of sex. And like Charlie Sheen, I am HIV-positive.

When a famous person comes out as HIV-positive, the story is not just about them, and it’s not just about HIV. For the community of HIV-positive people, it’s inevitably a story about us. It’s impossible for those of us living with HIV not to see the debate, the judgements and shaming as directed not just at Charlie Sheen the actor, but at Charlie Sheen the symbol of people with HIV. You’re talking about us.

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The story came crashing into my timeline in the form of a post from a friend in New York: the front cover of the US magazine National Enquirer, with the screaming headline CHARLIE SHEEN AIDS COVER UP. I felt sick.

The National Enquirer is hardly a bastion of fine journalism, but I doubt the rest of the media coverage will be much less salacious. Just that screamer headline contains at least two glaring mistruths.

First, HIV is not AIDS. Sheen is HIV-positive; that means he has the virus that, without treatment, almost always leads to AIDS. But AIDS is a disease that is now almost unknown, at least in rich countries like the US and Australia, where people can access treatment. Treatments for HIV are so good now that they can reduce the amount of virus in the bloodstream to virtually zero. This means that people with HIV can live long, productive, healthy lives once they are tested, diagnosed and on treatment. Sheen has told the Today Show he is on treatment and doing well – that means he does not have AIDS, and he’ll never develop AIDS.

Keeping your HIV status private is not a ‘cover-up’. A person’s HIV status is a personal matter and everyone, positive or negative, has a right to privacy. Even movie stars.

And secondly, keeping your HIV status private is not a ‘cover-up’. A person’s HIV status is a personal matter and everyone, positive or negative, has a right to privacy. Even movie stars.

It’s a sad reality that, despite more than 30 years of education and information, HIV is still a highly stigmatised disease, so it’s understandable that most people with HIV don’t want that information to be made public. I feel sorry for Charlie Sheen in the same way that I feel sorry for the many HIV-positive people I know who have had the experience of having their HIV status disclosed without their permission. That right to privacy is something that, once it’s taken away, you can never get back.

According to the National Enquirer, Sheen has “SLEPT WITH THOUSANDS OF WOMEN — AND MEN!” So what? Some people have lots of sex, and if you’re HIV-positive there are precautions you can take to prevent transmission of the virus. Everyone knows condoms are one effective prevention tool, but we also now know from rigorous scientific studies that HIV treatment itself has a powerful preventative effect – possibly more effective than condoms alone.

The leading study in this area found that HIV treatments reduce the risk of passing on the virus by a staggering 96 per cent. By comparison, condoms are between 70 and 80 per cent effective in a real world scenario (because they sometimes break, slip or leak) and that’s enough to make them the gold standard for HIV prevention.

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So the implicit message of the story – that because Sheen is HIV-positive, he shouldn’t have had all that sex – is nonsense. If he’s on treatment, the risk of transmission is practically zero. If Sheen used a condom (or if the other partner was on PrEP, the new frontier of HIV prevention), the risk is even lower.

As this story runs over the coming days, spare a thought for those of us who are HIV-positive, but don’t have the millions of dollars, the PR consultants, the spot on the Today Show. If you think Charlie Sheen deserves to be outed as HIV-positive, think about the young positive guy who did the right thing by telling his partner, and got bashed for it. Think about the woman whose family will never speak to her again after they found out. Think about my own ex-partner whose parents sent him a crate of disinfectant for Christmas. We are all Charlie Sheen, in some small way, today.

Stigma remains a very real force in the lives of people living with HIV. Medical treatments have reached the point where HIV need no longer cause any significant illness at all, but stigma is a burden we carry every single day. It eats away at your own sense of yourself, it makes you feel dirty and ashamed. So it takes great courage to say, "I am HIV-positive", even to your closest friends. Owning up to a TV audience of millions about a life of sex, drugs and HIV is something that’s given me newfound respect for Charlie Sheen.

Paul Kidd is a Victorian law reform activist who has lived with HIV for 30 years.