Today is World Aids Day. For more than 30 years Ireland has been living with HIV/Aids. It is time to begin a conversation that speaks the truth about HIV and that challenges society on how to respond to HIV. This conversation is crucial if we are to tear down the fear and prejudice that still surrounds people who live with HIV, a fear and prejudice that is more widespread here than we may want to believe. Given the 7,000-plus men and women who were diagnosed HIV-positive in Ireland since the 1980s, a significant number of whom died due to Aids, this conversation is long overdue.
When you speak with people who are HIV-positive you get a sense of what life is like for them. Members of Positive Now, the All-Ireland Network of People Living with HIV, speak openly about feelings of guilt, shame and self-loathing experienced when they were first diagnosed with HIV, and the impact it had on their lives and relationships: “I couldn’t tell anybody; what would they think of me?” and “My mother wouldn’t hug or kiss me any more.” There was a sense of being alone. And then came the stigma, the reality of losing friends to HIV, seeing their bodies being zipped up in body bags, untouchable, with no dignity in death because of the social fear that surrounded the virus.
Thirty years later the landscape has changed significantly. Once diagnosed, and receiving treatment, people with HIV can live healthy and fulfilling lives. However, a cure for HIV/Aids remains elusive and, unlike other chronic illnesses, being diagnosed HIV-positive brings a stigma that is equally debilitating.
For people living with HIV in 2014, talking about their status is difficult. It takes courage and resilience. It takes a willingness to risk being judged, being rejected by friends and family. All because society does not understand HIV, fears HIV and has not accepted the reality of HIV. Maybe we have simply forgotten?
Newly diagnosed
The HSE Health Protection Surveillance Centre states that in 2013, 344 people were newly diagnosed with HIV. By November 15th, 349 people had been newly diagnosed with HIV in 2014. By year-end one person per day will have been diagnosed HIV-positive in Ireland.
The figures show that HIV is disproportionately impacting on particular groups of people – primarily, but not exclusively, men who have sex with men (MSM) and migrants, particularly those from countries where HIV is endemic. A similar picture emerges worldwide.
By initiating a conversation that highlights these facts we run the risk of fuelling homophobic and anti-migrant prejudice. And yet, if people living with HIV in Ireland are to be fully accepted we cannot ignore the truth. We must explore what lies behind these statistics.
Surely it is more than coincidence that the high figures among MSM and migrants sits with individuals who already experience marginalisation within society? This in turn leads to greater barriers to accessing HIV testing and treatment alongside prevention support such as free condoms and information on transmission.
If we don’t take responsibility for HIV, it will make it increasingly difficult for people to become aware of the risks, especially for those who already find themselves excluded because of their sexuality or country of origin.
Twenty years ago in Ireland Intravenous Drug Users ranked high in new HIV diagnoses, primarily due to transmission of the virus via shared needles. They could have been ignored. Instead, the response was to introduce a harm reduction approach to treatment for drug users, including needle syringe programmes. HIV among drug users has reduced significantly due to this intervention (from 74 new diagnoses in 2004 to 18 in 2013). We need to be equally innovative and brave when it comes to current figures. People who are marginalised need to be understood and supported. Inadvertently forcing people to the fringes of society increases the barriers they experience in accessing health services. In the 1990s it was IV drug users; in 2014 it may well be sex workers, people who are homeless, migrants.
Contracting HIV
And lest we forget, there remains a sizeable number of young heterosexual people contracting HIV in Ireland. We must talk about HIV to ensure all people are aware of the implications of contracting it and the risks of not knowing their status. The World Health Organisation (WHO) estimates that more than 30 per cent of people who are HIV positive in the world don’t know that they are. The risk of onward transmission is obvious. We all have a responsibility to know our HIV status. Testing is free.
The elephant that requires unveiling in this room is sex, the primary transmission route for HIV in Ireland.
A draft National Sexual Health Strategy currently winds its way through the corridors of Government. Its importance lies in placing sexual health on a national policy footing. It will send out a message that we are serious about our nation’s sexual health. We patiently await its launch.
HIV must sit firmly within that public health arena. It can only do so if we all accept responsibility for understanding what needs to be done to halt the spread of HIV in Ireland. A first step is to listen to people who are living with HIV. After all, they know what they’re talking about.
Niall Mulligan is director of the Dublin Aids Alliance, and James Goulding is a member of Positive Now