Recently I applied to give blood. One of the requirements of donation was undergoing a health check and a number of tests, including for HIV. Now the HIV test scared me. In fact it downright terrified me. Not because I believed I had HIV (I was tested for it six months earlier) but the very idea of putting myself in a position where I might have it was enough to make me consider abandoning the blood donation altogether. The fear comes not from the likelihood of mishap but the consideration of its consequences. I began to put various hypothetical questions to myself: would I rather be diagnosed with cancer or HIV? Lose a leg or contract HIV? Live 100 years with HIV or 50 years without?
A number of contemporaries I spoke with admitted they found the thought of an HIV test too scary to contemplate. “Why would I do that to myself?” was the common response. “I’d rather not know.” One of those I questioned summed up the matter concisely: “I don’t think I have HIV so getting tested could only result in bad news.” A logical if somewhat individualistic stance seems shared by much of my generation.
Indeed the only person I encountered who knew extensively about HIV and tested regularly was a friend who’d spent the last five years in South Africa – a country in which not being HIV-aware and testing regularly is unthinkable. Meanwhile in Britain, ignorance seems to be bliss. And I stress the ignorance.
For HIV remains very much prevalent on these fair shores. An estimated 100,000 people are currently living with HIV in the UK, of which estimated 22,000 are infected but undiagnosed. Around 1 in 10 new cases of HIV are diagnosed in young people aged 16-24. Clearly my generation has considerable stake in preventing HIV. Yet how much are we actually doing? And how much do we know about living with HIV in 21st century Britain?
To get a better idea I spoke with Ross Boseley, Health Promotion Coordinator at the Terence Higgins Trust in Brighton. Founded in 1982, the THT is a British charity that works with people with HIV and promotes HIV awareness and good sexual health. Two things well worth promoting, as I’m sure you’d agree.
“Awareness in the gay community, especially in Brighton, is good,” said Ross. “What is problematic is if people don’t get their HIV diagnosed.” Yet fear of discovering HIV is strong enough to prevent many people from HIV testing. “It’s not just a virus, there’s a lot of stigma attached,” Ross said. “We have a whole wider social issue on how people may face discrimination.”
But surely people need to be scared of HIV in order to guard themselves against it? Fear equals caution equals precaution equals prevention? Ross was emphatic in his rebuttal: “There is plenty of research that says fear does not work.” He drew parallels with the current anti-smoking campaigns.
Since 2003 every UK cigarette packet has carried health warnings so stark they are basically threats: “Smoking kills”, “Smokers die younger”, and “Smoking can cause die a slow and painful death”. Packets now also show highly graphic pictures such as burnt out lungs, ruined teeth, and partially obscured dead bodies. But the effect of such shock-tactics has been negligible. Statistics from the public health charity ‘Action on Smoking and Health’ (ASH) show that since 2007 the rate of smoking has remained largely unchanged – at around 20% of the adult population.
In the 1980s, when AIDS mania was at its height, a number of adverts were shown around the world that make today’s anti-smoking equivalents look tame. Most famous in the UK is probably the ‘Tombstone Ad’ which showed the legend ‘AIDS’ being etched into a blackened grave as John Hurt’s voiceover warned, “It is a deadly disease and there is no known cure”. The campaign was initially effective. However, as with smokers, there reached a point when the target audience became inoculated, and the adverts began stigmatising those they were trying to protect.
Nowadays HIV campaigns are fronted by smiling teenagers, not Grim Reapers; slogans like ‘It starts with me’ show the emphasis is very much on HIV-testing-as-social-responsibility rather than mortal urgency. Ross noted that “compared to the 1980s things have come a long way.” But the stigma still lingers. The terrors of tombstones, mass epidemic, and Death that were sledgehammered into the national consciousness have proved difficult to dislodge – even for organisations that put them there.
As well as avoiding HIV tests, a lot of young people are unclear how the HIV infection is spread. You can only become infected with HIV through unprotected sex with someone who is HIV positive or sharing injecting equipment with someone who is HIV positive. In short, you can only catch HIV if you put yourself in a situation where catching HIV is a possibility: HIV will not jump out as you walk down the street. You cannot ‘catch’ HIV the same way you might catch a cold. Indeed really ‘catch’ is far too casual a word, implying HIV is something you might happen to pick up on a particularly bad day:
‘Christ, what a morning! Bus was late, forgot my umbrella, and I think I may have caught HIV.’
Phrased like that the concept seems ridiculous. However due to ignorance about HIV transmission a vast number of people do indeed see HIV as a constant and unavoidable threat. More damagingly, they believe any type of contact with an HIV carrier greatly heightens the threat of transmission. In fact you could spend your entire life with an HIV carrier and provided the two of you don’t share needles or have unprotected sex then you face no risk of infection. Nada. You could touch, kiss, use the same toilet, go swimming together, spit, sneeze and cough in each other’s faces and you wouldn’t catch HIV. (Although the last three are still pretty gross.) You could share a fucking toothbrush and you wouldn’t catch HIV.
Avoid indiscriminate, unprotected sex with numerous partners and avoid injecting needles into yourself – leaving aside the HIV risks, these are pretty sound rules in general. (Indiscriminate, protected sex with numerous partners is another matter.)
What health risks do people living with HIV face today? Ross was keen to stress that this is “not a black and white issue” – treatment can vary from person to person. The aim of HIV treatment is an ‘undetectable viral load’: the point where the level of HIV in the blood is so low, it can’t be detected by tests. To achieve an undetectable viral load, prescriptions must be taken regularly, and for the rest of one’s life. Even then the process is not always straightforward. Many people must take a large numbers of drugs and painkillers in order to keep the virus under control.
But HIV can be controlled. Medically, if you continue to take your treatment as you should, you could live near enough to a normal life expectancy. Nor is it a particularly limited life. People with HIV can be sexually active. With the right precautions, sexual relationships are possible between two people who are HIV positive (known as a sero-concordant relationship), or indeed someone HIV positive and someone HIV negative (a sero-disconcordant relationship). People with HIV can have children. In the UK today there is less than a 1% chance of an HIV positive mother passing HIV on to her child if the right steps are taken. Ross was emphatic on how to describe these people. They are “living with HIV. Not ‘dying’, not ‘infected’, not ‘carrying’ – they are living with it.”
So why are so many still so scared of HIV? “Stigma!” stressed Ross. That word again. “Stigma stops people from coming forward! Stigma stops people from being tested!” Is stigma now a bigger concern for those living with HIV than the virus itself? Ross paused. “There are still health concerns,” he said eventually, “but for people living with HIV, discrimination is a major concern.”
I wanted a medical opinion on the stigmatisation of HIV so I got in touch with a friend who has just qualified as a doctor. Why does this stigma exist?
“Ignorance,” my doctor friend said. “HIV is stigmatised based on the perception that it is principally a disease of homosexual males. It is thus essentially a homophobic stigma. Actually, whilst rates of transmission are higher in men who have sex with men, more HIV positive patients are infected by heterosexual contact than sex between men.”
I asked the doctor whether he thought the average patient of his would rather be diagnosed with early onset cancer or HIV.
“Cancer,” he replied promptly.
What about cancer with a 50/50 chance of survival, against immediately diagnosed and treatable HIV?
“Cancer,” he said after a moment’s deliberation. “Only due to ignorance. But for most people, I would say HIV is worst-case scenario kind of stuff. Not that it should be of course, especially compared to, say, pancreatic cancer.”
It is a pretty startling state of affairs. And I wonder if an additional factor isn’t behind our fear of HIV… Sex – or rather: sexual impropriety. Assuming you have contracted HIV then the connotation is clear: you have had sex with someone you shouldn't. (Branded as a sexually transmitted disease, HIV is viewed primarily through sex: infection through genetic inheritance or shared needles, while obviously possible, is not the immediately assumed source.) Despite our supposedly liberated society the idea of sexual impropriety still has a very strong hold over us. Just consider the endless parade of kiss-and-tell stories, sensationalised orgies and the constant speculation on fidelity, sexuality and promiscuity that fill tabloid pages and internet gossip columns on a daily basis. Suggestion of sexual impropriety is the selling point of all such stories. The footballer who cheats on his wife; the rock star who beds ten groupies a week; the teacher who seduces their pupil; the MP who shares hotel rooms with a junior aide: all carry a common thread, some openly, some merely as subtext, of sexual acts that for some reason or other can be considered ‘wrong’. HIV also involves a sexual act that can be considered ‘wrong’. As well as the health detriment there is also a moral angle: that of promiscuity being punished, carelessness and hedonism resulting in infectious, incurable retribution. To have HIV is to be branded as sexually unsound.
All nonsense of course. Infection and incurability are discussed above, and immorality is too ridiculous to rebut. But nevertheless in a sex-obsessed society the notion of sexual taboo (however unfair) is extremely powerful. And possibly this has helped create a taboo – or stigma – around HIV itself.
So how can the general public engage with HIV? When I asked Ross this question he answered instantly. “Practice safe sex. Certainly if you sleep around. Get tested regularly.” He sighed. “We need to reach a point where HIV testing is commonplace for everyone – gay, straight, man, woman. When an HIV test is just something you do. And then, perhaps, one day we won’t need it anymore.”