It’s almost 30 years since the first cases of AIDS were diagnosed and the HIV epidemic among UK gay men shows no real signs of abating. According to figures released last week, in 2009, a total of 2,760 gay men in the UK learnt that they had the virus.
With the right treatment and care, most of these men will have a more or less normal life expectancy.
But at the very least, having HIV will make their lives harder, and for a good number it will involve both physical and psychological pain and suffering.
One of the reasons for this is huge amount of stigma that still surrounds HIV.
Indifference, hostility, contempt and even hatred characterises the response of far too many gay men to their HIV-positive peers. This doesn’t only hurt feelings and blight opportunities: stigma contributes to the continued spread of the virus and it also leads to needless deaths.
Gay men have much to be proud of in the way that they’ve responded to HIV. We cared when no one else did; we helped shape the domestic and international response to the epidemic; and many of us have responded with love, compassion and empathy.
But all too often this isn’t the case. This was clearly demonstrated by a startling report published in 2009. It examined the attitudes of gay men toward the criminalisation of HIV transmission. A clear majority of gay men supported prosecutions for this offence.
But what was most shocking about the report was – to quote its authors – the “fear and loathing with which men characterise those ‘other’ gay men and bisexual men with HIV”. The researchers concluded that the stigmatising of HIV “continues to be the largest underlying challenge to our HIV response”.
Men who’d never been tested for HIV were the group most likely to support prosecutions. These men – and those who believed themselves to be HIV-negative – also expected HIV-positive men to disclose before sex. But the report made clear that the stigma that surrounds having HIV is likely to act a powerful disincentive to disclosure.
The high levels of undiagnosed HIV among gay men in the UK (25 per cent of those with the infection do not know they have it, according to the most recent figures) means that relying on disclosure is a deeply flawed way to try to avoid the virus.
Moreover, undiagnosed men are driving the continued spread of HIV. A study conducted among gay men in Quebec found that half of transmissions originated in men who’d only recently been infected themselves.
By contrast, many men who have been diagnosed are not the vectors of disease that they are often feared to be. Taking HIV treatment can dramatically reduce a person’s infectiousness. Doctors in Brighton recently tried to establish transmission trains between men who’d recently been diagnosed with HIV and those who were already receiving care at their clinics. There was no convincing evidence that any infections originated in a person taking successful HIV treatment.
The precise impact of treatment on infectiousness is hotly debated. But what’s not in doubt is that anti-HIV drugs save lives. Tens of thousands of HIV-positive gay men in the UK are alive and healthy thanks to this treatment.
However, men who have not had been diagnosed cannot take advantage of this treatment and many men put off testing because they fear HIV so much or think that it has nothing to do with them.
The latest figures show that 39 per cent of gay men were diagnosed when their immune systems were so weak that they needed to start HIV treatment immediately. Moreover, 30 per cent of these men were diagnosed so late that they had a real risk of developing a potentially fatal illness. Indeed, late diagnosis is the reason underlying most of the HIV-related mortality that we still see in the UK. With earlier diagnosis these deaths would have been prevented.
But it’s not just negative and untested men who stigmatise – HIV-positive men can be guilty of this too. This is most evident in the attitude of some men towards those who are co-infected with HIV and hepatitis C.
There’s an epidemic of sexually transmitted hepatitis C in HIV-positive gay men. It appears to be spreading in networks of positive men who are “sero-sorting” – selecting men who have the same HIV status. Risky and rougher sex, especially if it involves contact with blood, appears to be the main risk factor, and drug use also appears to have a role.
Ironically, some HIV-positive men are relying on a flawed disclosure strategy as a way of avoiding hepatitis C and ostracising the men whose infection has been diagnosed. All this does is intensify the stigma that surrounds hepatitis C and create an environment that allows the infection to spread.
Gay men should be encouraged and supported to avoid life-affecting and potentially life-limiting infections like HIV and hepatitis C.
But prevention efforts will be fundamentally undermined unless the stigma that characterises the response of so many men to these infections is addressed. All stigma does is cause pain, perpetuate transmissions, and in many cases contributes to tragically early deaths.
Michael Carter is the author of HIV and Stigma and a member of the Men2Men Collective, a Europe-wide initiative that has been established to raise awareness and provide education around HIV and stigma in the gay community. It is supported by a non-promotional educational grant from Abbott Laboratories.