It’s hard to imagine what someone feels when they’re told they are HIV positive.
For some, it’s a private matter, for others, it’s a chance to try and help create awareness so others aren’t affected in the same way – by receiving treatment earlier, educating themselves in managing their infection, or by tearing down the stigma associated with a positive diagnosis.
Today, December 1st, marks World AIDS Day.
While we know public knowledge and understanding of HIV has dramatically improved since the 1980s, a stigma and fear still hangs over those who face a positive diagnosis.
Last month, Charlie Sheen confirmed he is living with a HIV positive diagnosis. While gossip columns and newspapers clambered to fill column inches, the actor’s revelation has once again ignited the debate on living with a health-related stigma.
To mark the ongoing battle with a positive diagnosis, Her.ie’s newest contributor Sarah Hennessy examines Charlie Sheen’s timing in the fight for HIV awareness and treatment.
A surveillance scientist with a Masters in Public Health from UCC, here Sarah talks diagnosis, treatment, and the unnerving fear that permeates the HIV debate:
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Two weeks ago, Charlie Sheen took part in an interview for NBC’s Today show, during which he admitted to being diagnosed with HIV four years earlier. The day after the interview, Sheen wrote an open letter to the media describing the “suicide run” that followed his diagnosis in 2011, involving an “abysmal descent into profound substance abuse and fathomless drinking”, and a very public meltdown.
Today, HIV is a completely treatable and containable disease, particularly when diagnosed early. Highly active anti-retroviral therapy (HAART) is the current treatment for the disease and involves taking one pill a day resulting in virtually completely undetectable levels of the virus in the blood (i.e. viral load) in the majority of patients. This means that those with a positive status can often continue to have healthy and safe sex lives, parent children, and ultimately enjoy a life expectancy similar to that of their HIV negative counterparts.
This begs the question – why the extreme reaction from Sheen? He described HIV as a “hard three letters to absorb”. Why does HIV still have such a bad rep? Why, when other chronic diseases are met with sympathy and support, is HIV met with scandal?
Fear is the main protagonist when it comes to the stigma associated with a positive HIV diagnosis. When HIV first came about in 1981, nobody knew what it was or what was causing it or how to stop it.
This alone terrified people. All that was known about the disease at that time was that (for the most part) it seemed to only affect gay men, or intravenous drug users.
Diagnosis was a death sentence, with the fear of contagion adding to the taboo status of the illness. Coupled with the marginalisation of both gay men and intravenous drug users at the time, those with a positive HIV diagnosis found themselves ostracised from society.
This isolation began with avoiding even the most casual forms of contact with those infected – hugging, kissing on the cheek, shaking hands – leading to an increasing number of violent attacks occurring towards HIV positive people.
There is a long list of examples of HIV-related stigma throughout the last 35 years. In 1984, police in Australia demanded that random breath tests be stopped, for fear of contact with the virus through the saliva of potentially infected motorists. In 1987, HIV was added to the list of “communicable diseases of public health significance” in the U.S. which effectively banned those with a positive HIV status from obtaining a travel visa to visit the States. This restriction was only lifted in 2010. Possibly one of the most well-known and high profile examples of stigma involves Earvin ‘Magic’ Johnson, the Los Angeles Lakers basketball star. Magic Johnson was at the peak of his career in 1991 when diagnosed with HIV, which he contracted through heterosexual sex.
He was forced into early retirement due to the fact that many of his fellow players refused to play with him for fear of being infected.
Thirty years later, we have successfully gathered a vast amount of information in relation to the human immunodeficiency virus. We know where it came from, how it’s spread (and more importantly, how it’s not), how it affects the body, how it can be treated and contained and how to prevent it. There has been a monumental change in the level of knowledge and expertise surrounding this disease, but can the same be said for the level of stigma? Even today, so bad is the public perception of HIV, Sheen admits to having “paid out countless millions” to former lovers and ex-confidants in order to keep his diagnosis under wraps.
But stigma doesn’t just affect people in the limelight or people far away. So far this year, 427 people have been newly diagnosed with HIV in Ireland, over half of whom are in their 20s and early 30s. According to the National AIDS Trust in the UK, one in five people with HIV are undiagnosed. To put that in context, while 427 people were diagnosed with HIV in Ireland this year, approximately 105 more people remain undiagnosed.
Stigma surrounding the disease can often mean people are too ashamed to seek help or get tested which, as well as resulting in poor health outcomes due to delayed treatment, can ultimately lead to further spread of the infection through sexual activity.
One of the best ways to challenge the stigma attached to HIV is to talk about it. During his interview with Matt Lauer on the Today show, Sheen claimed he now feels free of the stigma that haunted him for the previous 4 years. American TV actor Danny Pintauro, also HIV positive, recently labelled HIV ‘the new closet’, and Sheen hopes to have ‘kicked the door open’ and encourage others to come forward about their diagnoses.
Today, December 1st, marks World AIDS Day and the Irish theme for this year is solidarity with those living with HIV in Ireland. Key buildings in Cork, Galway, Limerick and Dublin will be illuminated in red in support of the HIV Red Ribbon campaign, and there are many events and activities taking place around the country including free HIV testing, distribution of red ribbons, seminars and information sessions.
It is fair to say that Sheen’s admission has certainly restarted the HIV conversation and perhaps even put HIV back on the agenda, on a global scale. Increased openness with regard to sexual health will lead to greater awareness, higher rates of testing, and hopefully reduced stigma and discrimination for those affected.
