Many of us who are working in or around the HIV sector assume – often incorrectly – that the level of knowledge that we have is one that is widely shared in the general population. Such great advances have been made in the last two or three years on HIV management, surely this is news that is distributed and discussed?
Sadly, this is not so. HIV and life with a positive diagnosis is usually only interesting to the media if there is a salacious, celebrity element, or if a newspaper can play the ‘Disgusted of Tunbridge Wells’ card. Barely a month goes by without a story that gets to mention someone’s HIV status. Recently, Conchita Wurst was forced to reveal her HIV status because there was a threat of blackmail by an ex-partner. Interesting that one’s status is seen in such a negative light even today. Previously there was (justifiable) outrage that Grindr had given user data, including HIV status, to an analytics company. And it’s not that long ago that NHS England went to the High Court in the first attempt ever to avoid issuing a proven prophylactic, PrEP. That action in itself made clear NHS England management’s view of gay men.
Stigma Index UK runs an ongoing survey on attitudes to HIV. As many as one in five people living with HIV have not told anyone else about their status, and one in five have experienced malicious gossip, with nearly as many being rejected sexually. Other reported incidents included verbal harassment, being excluded from family or other social gatherings, job problems and physical violence.
The irony is that recent medical breakthroughs have, literally, changed the world for those living with HIV. PrEP (and its counterpart PEP, taken by those already living with HIV) has changed the medical outlook – if you are on PrEP, it is not possible to contract HIV. Gay men have ‘got the message’ on PrEP – 56 Dean Street, the Soho sexual health clinic, has been able to report a 40% decrease in infection rates for a second year running, an overall 80 per cent two-year drop over that period.
For those living with HIV, PEP is taken after infection to reduce the patient’s viral load to ‘undetectable’ (meaning less than 50 parts per million. And knowing about PrEP and PEP also means knowing about “U = U” – undetectable equals untransmissible. Other communities where HIV is a major problem, particularly BAME, have been more difficult to reach, partly because of the categorisation of HIV as a ‘gay disease’, again something hindered by media disinformation.
The result of fewer deaths, of course, is that more people than ever are living with HIV. That should mean that we must redouble our efforts to combat ignorance and stigma around the virus for those for whom HIV is now a lifelong, manageable illness.
Yet the gap in public perception remains. Those of us ‘within the bubble’ know that someone living with HIV who is on antivirals cannot pass on the virus, even during unprotected sex. However, stigma usually comes from ignorance, and I am sometimes surprised by how little my straight friends (and even some of my gay friends) know about the world-changing effects of PrEP/PEP.
Stigma causes damage. It prevents those who are at risk from getting important information on sex. The categorisation of HIV as a gay illness stops many from reconsidering their sexual behaviour. Those who are, or who suspect they are living with HIV do not seek treatment at an early stage (from our discussions with Spectra, the HIV drop-in service in West London), when the chance of the successful use of PEP is at its highest. And they continue potentially to infect others. People living with HIV often shy away from areas where they need to disclose their HIV status (based on the National AIDS Trust’s work and our own case studies). From the surveys that we do as an insurance company, it is clear that many people who live with HIV are worried about taking out insurance, or don’t take out the insurance that they need, because of the real fear of HIV stigma. Removing the fear of stigma is the first step in getting those living with HIV to best look after themselves financially as well as physically and mentally.
So we see stigma remains an issue. What are the immediate next steps? It’s simple. Charities like Positive East, the Terrence Higgins Trust and the Naz Project are doing great work at the forefront but stigma is something that we all need to tackle. Discuss with a colleague, write to a newspaper or become a volunteer. With a better understanding of the current state of play, we can do a lot to minimise stigma and really help those living with HIV to have better, more confident lives.