Originally published at Huffington Post:
One of my patients said to me recently: “When I was young I had unprotected sex a few times, so did my friends. Unfortunately it was me who became infected, and they didn’t. Why do I have to live with this shame, as if I did something terribly wrong? I had unprotected sex – that’s it!”
They were right: there’s nothing to judge negatively in that story, or any of the others which feature on our charity’s ‘Positive People’ webpages. Yet stigma continues to be a real problem for those living with HIV, and even for those simply trying to promote better understanding of the infection. The fact is, this unthinking prejudice is endangering peoples’ health … and costing lives.
Take Peter. He’s one of our charity’s positive advocates, and because HIV was not considered by his doctors as a possible cause of his symptoms, he and his partner were both diagnosed late – and as a result became far more ill than they needed to be. Someone living with HIV should be placed immediately on treatment as soon as what is known as their ‘CD4 count’ – a measurement of how the infection is affecting a person’s immune system – dips below 350. Because her infection had gone undiagnosed for so long, Peter’s partner had a CD4 count of less than twenty, and she nearly died.
That’s a story about a lack of awareness that the current rate of HIV amongst the black African community is almost forty in every one thousand people (according to the Health Protection Agency’s HIV figures for 2011). We constantly find ourselves having to emphasise that HIV is not just a ‘gay disease’, and this is a function of stigma, pure and simple. This is the kind of prejudice which still dissuades people living with HIV to speak out and raise awareness. Charities like ours still have to respect a decision that should not need to be made – to keep quiet about HIV, for fear of the repercussions.
Another of our advocates, Chris, remembers a national tabloid newspaper invading his church, to take photographs for a lurid story ‘outing’ him as HIV-positive – a story his grandparents read before he’d had time to talk to them himself. That was in the earliest days of HIV, and there’s no doubt we’ve moved on – but not far enough. Another of my patients, a successful woman with a hugely profitable career in the City, doesn’t feel able to talk publicly about her diagnosis, because she fears damage to her career.
These are the human faces of stigma. The statistics tell the same story – a quarter of those with HIV in the UK are entirely unaware of their status, and it’s in large part because people are scared to take the simple test that could allay their fears or get them on life-saving treatment. People are still dying of HIV – and it’s because stigma is preventing us diagnosing them in time.
So ask yourself today: how does the thought of HIV make you feel? And why? It’s one of our most important public health questions.