We Can Prevent HIV: Only the Stigma is Stopping Us

There’s still a strongly held belief that those living with the virus in some way ‘deserve it’ for their carelessness, stupidity or immoral behaviour. Even amongst my relatively enlightened peers at SOAS, jokes or comments about ‘catching AIDS’ or ‘people with AIDS’ are fairly common. Yet when I ask my friends if they have regular HIV tests, none of them say yes and many will admit that they have never had one. People assume that they are not at risk of HIV; that it’s only a disease for ‘gay people’ or ‘Africans’.

In the UK, around 25% of people living with HIV don’t know they have the virus. Men and women who have heterosexual sex make up the largest percentage of those living with HIV who are undiagnosed. And there are more heterosexual people living with HIV in the UK than men who have sex with men. So although there may be a higher percentage of the LGBTQ community living with HIV, it’s often heterosexual people who are driving the epidemic in this country. If you’ve been diagnosed with the virus, you can protect yourself and others. People who are on medication reduce their risk of transmitting the virus by 96%. Because the majority of men who have sex with men regularly get tested for HIV, they are actually far less likely to pass the virus on.

In 2014 a study took place in the UK to determine the effectiveness of PrEP; a revolutionary new drug which could reduce the risk of contracting HIV by over 85%. The impact this could have on ‘high risk’ groups would be phenomenal. The study was carried out amongst men having sex with men in London, where one in eight gay men is HIV positive. In the first year of the study there were just 1.3 new infections per 100 people for those who were given PrEP, compared to 8.9 per 100 for those who were not taking it. For some, there is a fear that taking PrEP would encourage more risky behaviour and decrease condom usage. But the study proved them wrong: the number of STD infections (excluding HIV) was the same for both groups.

The study was not without its flaws. The trial group consisted only of men who have sex with men; leaving out other groups at a high risk of contracting HIV such as sex workers, injecting drug users and Afro-Caribbean men and women. However, studies on these two groups in the US have had mixed results and the efficacy and ethics of the drug are yet to be determined for them. For Afro-Caribbean women, there can be a significant cultural stigma associated with HIV. As a result, many studies have had mixed results due to the low percentage of women who adhere to the drug for the duration of the trial. In the sex worker community, many feel that PrEP may actually undermine the culture of condom use and safe sex which is promoted to both sex workers and clients.

Whilst these issues urgently need to be addressed, you’d think such amazing results would be more than enough evidence to provide PrEP on the NHS for those who want to take it. But despite over 3000 people and prominent HIV organisations having signed a petition calling for it, it seems PrEP is still a long time coming. The NHS is still ‘evaluating’ it’s usefulness, despite the drug having been available in the US since 2012 and extensive studies being carried out there and in other European countries. It has been proven to be extremely effective, and if the human cost doesn’t convince you, PrEP would save an estimated £18000 a year for each person who doesn’t contract the virus.

Much of the stigma surrounding HIV comes from the 80s, when there was no effective treatment and an HIV diagnosis was essentially a death sentence. People were terrified of HIV; there was no treatment, no cure and no way of knowing how it was transmitted. They thought it was a ‘gay virus’, something which only men who slept with other men could contract. According to Papadopoulos, Stephenson and Tsianos ‘when it erupted in Western gay communities in the mid 1980s, HIV initially triggered a moral panic, not over the deaths it caused, but over what it suggested about the vulnerability of the body – and of the body politic. HIV was a reminder to many that gay men, regardless of their actual sexual practices, subverted the masculinist fantasy of the intact body underpinning the heterosexual matrix.’

Though it wasn’t simply a ‘gay disease’ then and certainly isn’t now, this kind of moral panic still permeates the way we view HIV, in a way that we simply don’t view other illnesses. Take diabetes, an illness which like HIV, some people may be more susceptible to because of certain lifestyles or genetic predispositions. Diabetes is a serious illness; in many ways more serious than HIV; but we would never stigmatise or moralise it in the way we do HIV. If their was a pill available which could prevent obese people from developing the disease wouldn’t we give it to them?

With almost every major HIV-related organisation in the UK calling for PrEP on the NHS, there seems no logical reason to wait. Of course, the situation is complex and costs have to be calculated, but I can’t help but think that if HIV were not so closely associated with sexual deviance, immorality and the LGBTQ community, PrEP would be a lot higher up the agenda. It took years of dedicated activism and millions of unnecessary deaths to access the life-saving treatment needed in the 1980s and 1990s. Have we learnt nothing from those lessons?