Think living with HIV is shameful? Time to check your facts

People — like Charlie Sheen — living with HIV are not “victims”, “carriers” or “sufferers”. The fact someone could be blackmailed for being HIV-positive shows we, as a society, still have a long way to go.

Actor Charlie Sheen’s opening words made me wince: “I’m here to admit that I am HIV-positive,” the 50-year-old told American breakfast TV.

Admitting something implies guilt; it brings with it a nuance of shame. As with diabetes or heart disease, there is no shame in living with HIV.

And while Sheen has been described as brave for announcing his positive status to the world — and it did indeed take guts — he was in fact forced to disclose his condition after lurid headlines redolent of the “gay plague” screamers of the ‘80s started to appear in the tabloid press. “Hollywood HIV Panic” shrilled the UK Sun; “Charlie Sheen AIDS Cover-Up” thundered US gossip rag the National Enquirer.

Woah — let’s stop there. Two things. Firstly, Sheen does not have AIDS. He is living with the human immunodeficiency virus that can lead to AIDS if left untreated.

Secondly, Sheen did not “cover-up” anything: he chose not to disclose. Celebrity or not, a person’s HIV status is a personal matter. A person living with HIV has every right to privacy. Sheen’s diagnosis is none of our business.

Then there was the inference that — due to his lifestyle: the drugs, the booze, the parties — Sheen deserved his diagnosis. Such sensationalistic reporting feeds unnecessary fear about HIV in the community, stigmatises people living with HIV, and spreads misinformation about the nature of the disease.

On the upside, it provides an opportunity to spell out the facts.

So, the facts: HIV is no longer a terminal disease. It is a chronic condition that can be managed successfully through effective treatment. Through effective treatment, a person living with HIV can acquire an undetectable viral load.

Research tells us that when a person living with HIV has — like Sheen — an undetectable viral load, the risk of onward transmission is virtually impossible. There is far greater risk having condomless sex with someone of unknown status than with a person living with undetectable HIV.

Through effective treatment (for many, a once-a-day, single pill regimen) people living with HIV can live long, productive lives. They are not “victims”, “carriers” or “sufferers”. Terms such as these disempower HIV-positive people by implying they have no control over their lives — that they are at the mercy of the condition. On the contrary, people living with HIV have for many years been active agents in their own health management and leaders in Australia’s HIV response.

It is important that Sheen’s disclosure is reported in an informed and balanced way as inaccurate reporting further fuels the stigma and discrimination experienced by people living with HIV. The stigma attached to HIV isolates people which negatively impacts on their health and wellbeing.

The negative connotations surrounding the disease also prevent people from testing for HIV. Sexually active people unaware of their HIV status are a leading factor as to why new infections persist. People at risk of HIV need to know their HIV status, test regularly, and if they receive a positive HIV diagnosis commence immediate treatment. Taking control of their health by managing HIV will assist greatly in ending HIV in Australia.

In the TV interview, Sheen said he had paid “millions” of dollars to keep people from disclosing his HIV status to the media. “We’re talking about shakedowns,” he said. That — in 2015 — someone could be blackmailed for being HIV-positive demonstrates the level of stigma that still surrounds the disease.

According to a recent New Zealand survey, despite being aware of how HIV is transmitted (through bodily fluids such as blood and semen), 47 per cent of respondents said they would be uncomfortable sharing a home with someone living with HIV; while 56 per cent said they would feel uncomfortable having food prepared for them by someone living with HIV. How can it be that 30 years on people can still believe that HIV can be spread from drinking from the same cup or sharing a toilet seat?

No doubt the Sheen saga will continue to play out. But amid the misinformation, the truth is that the HIV epidemic will not be overcome without eradicating ignorance, discrimination and stigma.

Christopher Kelly is editor of Positive Living, a magazine published by the National Association of People with HIV Australia for people living with and affected by HIV.