Ten million dollars is more than most of us would see in our lifetime. That Sheen – a longtime supporter of HIV charities – would pay this much to keep his status private is indicative of the level of stigma still attached to HIV.
The stigma timeline
In the early 1980s, when there was scientific uncertainty about the ways in which HIV was transmitted, discrimination was fuelled largely by fear. People worried they would “catch” HIV from toilet seats, kissing or casual contact. There were calls for compulsory HIV testing of gay men and injecting drug users, along with quarantining all HIV-positive people.
In 1984 in Australia, NSW police demanded a halt on random breath testing for fear that HIV could be transmitted via motorists’ saliva, while Ansett and TAA airlines sought to ban HIV-positive passengers.
Even by the end of the 1980s, when it was well established that HIV was a relatively difficult virus to contract – requiring close blood-to-blood or sexual contact – this fear remained. In 1991, pro-basketballer Magic Johnson announced he had HIV and was forced into early retirement because other players feared being on the court with him.
Still today, unrealistic fears about HIV transmission are written into law. For instance, some countries prohibit HIV-positive people from acquiring travel visas – a restriction only lifted by the United States in 2010.
The world today has changed for people living with HIV. For someone who is appropriately treated with antiretroviral medication and has an undetectable viral load – as is the case with Sheen – the chance of them transmitting HIV to another person is close to zero. Add condoms to this and the risk of sexual transmission is even lower still. But how many people know this?
A recent survey in the United Kindom found that only 5% of people surveyed understood the impact of antiretroviral treatment on HIV transmission risk.
The study also revealed widespread misunderstanding of regulations surrounding HIV disclosure and risk – a third of respondents incorrectly believed a person living with HIV was banned from working with young children or as a chef.
HIV and ‘bad behaviour’
Undoubtedly ignorance about HIV transmission contributes to stigma and discrimination. But this is only part of the story. HIV has always been associated with behaviours considered deviant or morally suspect – homosexuality, drug use, promiscuity.
The impact of this is not just that people living with HIV are, rightly or wrongly, associated with such behaviours or identities, but that there is a stark lack of compassion for people living with HIV.
Like no other illness, there tends to be an implicit (and often explicit) differentiation between the “innocent victims” of HIV – children, people who acquired HIV through blood transfusions, women infected by their husbands – and those who presumably invited HIV through their choices and actions.
This maintains both stigma and silence around HIV. People don’t expect sympathy when they disclose they are HIV positive. They expect fear, blame and judgement, and so they don’t tell. This can create an immense burden for people living with HIV, irrespective of how they contracted the virus.
Removing the stigma
In 2010, the National Association of People with HIV Australia conducted a national study of the experiences of stigma among Australians living with HIV. The study revealed that while most people had experienced little or no overt discrimination, many held a level of internalised stigma and were anxious about how others would react to them.
Some 40% agreed with the statement “most people think that a person with HIV is disgusting”; 77% agreed that “telling someone I have HIV is risky”.
In response to this, anti-stigma campaigns in Australia today focus on people living with HIV as much as they do the wider community.
The “Fear Less, Live More” campaign by the Australian Federation of AIDS Organisations encourages people living with HIV to actively challenge their own fears and negative feelings about being HIV positive.
But this does not mean the community and media hold less responsibility to challenge stigma. Positive representations of people living with HIV are incredibly important in shifting attitudes and reducing ignorance.
Charlie Sheen described revealing his HIV status as releasing him from the “prison” of hiding this part of his life. Hopefully, this is true for Sheen and he does find public and personal support.
If nothing else, the focus on Sheen creates an important opportunity for renewed public discussion and reflection on how we as a community can engender greater awareness and respect for people living with HIV.