Today, as you hopefully already know, has been World AIDS Day. For me, it’s a rather complex day, as it’s an odd mishmash of different things: an occasion to remember the dead; an opportunity to keep in mind people who are living with HIV; an opportunity to remind people about the need to have safe(r) sex; and a time to re-focus attention on the global HIV pandemic.
Thankfully, for those of us who live in the west the need to remember those who have died of AIDS is diminishing. I’m in my mid 30s, which means I was born around 10 years too late to be among the generation of gay men who bore the brunt of AIDS in the developed world. For those of us who weren’t part of it, it’s very hard to imagine what it must have been like to be almost entirely surrounded by death. To be going, decades earlier than you would have expected, to an endless round of funerals for friends, and friends of friends – sometimes, in the winter months, more than one a week. To sit, as so many of those men did, at hospital bedsides, and in crematorium chapels, surrounded by an ever-dwindling group of friends, knowing that you were infected too, and wondering how long it would be until it was your turn to get sick, your turn to die. As I say, very hard to imagine – watching the film Longtime Companion is probably as close as most of us will get.
My personal experience of HIV/ AIDS is very limited, but I have known two people who have died. The first of them I’m going to call Robert. He was a lot older than me – in his late 40s while I was in my late teens – and I met him while I was a student. We used to drink in the same pub – it wasn’t officially gay (the town I went to college in wasn’t big enough to support an entirely gay pub), but the local gay social group met in the function room upstairs, and it was where everyone went on a Friday night. I only knew Robert for a couple of years, and never all that well. Once I was in a group of people that went with him to a cathedral that was displaying the UK AIDS quilt. He hobbled round it, and used his walking stick to point out the panel that memorialised a friend of his, the first person he had ever come out to. A few weeks later I was at his funeral, and heard his sister and mother talk about the panel they were going to create for him.
The other person I’m going to call Joe (and no, he wasn’t a plumber…).
Joe I got to know when I was in my late twenties, and he was several years younger than me. I met Joe online at first – he was open about his HIV status in a gay chatroom, and asked rather plaintively if there was anyone who wasn’t afraid to talk to somebody who was HIV positive, so we got chatting. Later on I met him in real life, too.
Joe had grown up in a very remote and isolated part of Scotland. He used to say that, growing up, he was the only poof west of Fort William. Most of the people he knew from home were members of the Free Church of Scotland, which is a fairly dour and hard-line christian sect. His parents didn’t have a TV, or a computer, and he was only allowed to listen to the radio under supervision. As you’d expect, he started trying to get away from home as soon as he could, but given his geographical location it was very difficult. He eventually made it out when he was 18, and he left for art school in one of the major British cities (I’m not going to tell you which one, because it’s where I still live, and I want to keep this anonymous). A few weeks into his first term he phoned up his parents to tell them he was gay. His father and his brother refused to speak to him. His mother told him ‘You’re dead to us,’ and a few days later he received a large envelope through the post. It was filled with ashes, and on the flap of the envelope his father had written ‘your pictures’. He had decided not to bring his portfolio of art with him to Major City (he was worried it might be damaged on the journey), and the ashes his father sent him were of every picture he had ever made, from childhood scribbles onwards.
Over the next months Joe’s life, essentially, fell apart. He stopped going to the art college, and was eventually kicked out. He ended up living with a much older man, who offered him free board and lodging in return for sex. At some point, the older man told Joe that he was HIV positive, and that since they’d been having unprotected sex, now Joe was, too. He told Joe that if he wanted to stop having unprotected sex, that was fine, but he’d have to move out that same day. With nowhere else to go, and thinking that he was already infected, Joe agreed to keep having sex. It turned out that the older man had done this twice already with other homeless men, and that the ultimatum was part of a plan – once Joe had agreed to keep having unprotected sex, it became impossible to say whether he had been infected before or after he knew about the older man’s HIV status, and so it was impossible for the police to prosecute. A few weeks later, and sure that he was safe from prosecution, he kicked Joe out anyway.
By the time I met Joe, he’d re-built a lot of his life. He had gone back to art school part time, he was getting proper medical care, and he’d been assigned a support worker. He did part-time bar work – he never lasted for more than a few weeks in any one bar, but he was almost always in work. The reason he couldn’t hold down a job for long is that every few weeks he would get the urge to go an a major binge, and he’d miss shifts, or turn up to work drunk, or hungover and in clothes he’d obviously been living in for days. One of his worst binges was sparked off after he plucked up the courage to phone his parents again, to tell them he was HIV positive. His dad and brother refused to speak to him, but his mother listened to him while he told her, then ended the conversation by telling him that all his troubles were of his own making, and that he deserved to die.
All of this was in the era when effective drugs had been developed, so there was no reason Joe couldn’t have had a long and productive life, although his habit of getting very drunk and forgetting to take his medication was a problem. But no-one who knew Joe really expected him to live that long. Apparently his support worker used to tell him that the cause of his self-destructive behaviour was his anger, and that he should learn to express it. Personally, I never thought Joe was angry, it always struck me that he was scared of what being HIV positive meant, and that he wasn’t self-destructive, just drinking to forget. Eventually Joe died during one of his drinking binges. He got into a fight, and was stabbed in the neck. Officially, AIDS didn’t kill him, but I’m certain HIV was involved in his death.
Of course, stories like that are exceptionally rare. Last year in the UK, it was estimated that 80,000 people are living with HIV (the figure is estimated because many people don’t realise they are HIV positive until they develop symptoms, often several years later), and almost none of those people will have stories as traumatic as Joe’s. That doesn’t mean they don’t deserve sympathy and empathy though – like Joe, they’re having to come to terms with what an HIV diagnosis means. These days, both people I knew are also a little exceptional because they were gay – in 2008 it’s estimated that 52% of people living with HIV in the UK are straight (43% gay or bisexual; 5% unknown).
Last year, 7,740 people in the UK were diagnosed with HIV. Of those 7,740 diagnoses, gay and bisexual men made up just over a third (35%). Intravenous drug users accounted for 2% of new cases, and transmission from mother to child 1%. 43% of new diagnoses were amongst white people, and 35% among black people from an African background. In total, almost half of all new diagnoses (47%) were amongst straight people who don’t inject drugs. These figures confirm what has been known for a while – that HIV is no longer restricted to the traditional ‘high-risk’ groups (gay & bisexual men; IV drug users; black people from Africa). This is the single most important message that needs to be spread on world AIDS day in the UK, especially given the fact that figures for other STIs suggest that a lot of straight people are having unprotected sex.
Back in the mid 80s, it used to be common to talk about a ‘nightmare scenario,’ in which HIV/ AIDS spread from the high-risk groups into the general population (this obviously upset people in the high-risk groups, who felt the situation as it was in the mid 80s was already a nightmare). This is exactly what has happened in a number of countries around the world, most notably those in sub-Saharan Africa, and there’s now a danger it could happen here (though almost certainly not to the same extent as in Africa, where there’s a lack of the medical skills and equipment necessary to prevent HIV being transmitted from mother to child). The scenario is, of course, less of a nightmare than it was, because modern treatments mean that, for most people, AIDS isn’t automatically an imminent death sentence. The drugs don’t always work, and for some people the side effects can be pretty horrendous – given the choice you really don’t want to spend your life on these meds – but there’s no question that (in the west) the nightmare in the scenario now isn’t that a lot of people will die, but that a lot of people will have to spend their entire lives taking expensive medication.
This is why I’m still persuaded by a line in a 1990 song by Jimmy Somerville – ‘Read My Lips‘:
Finding cures is not the only solution
Of course, that line was written at a time when it still seemed like a cure or a treatment for HIV was a long way off, but the alternative it was calling for – that money simultaneously be spent on educating people on how to avoid HIV infection, and distributing free condoms etc – still holds good. Again, at the time, a lot of the resistance to the idea of education and free condoms was based around religious objections – people were concerned that to do those things might mean condoning or encouraging a ‘sinful lifestyle’. These days, thankfully, a lot of those objections have melted away – perhaps since it’s become clear that if your husband or wife was born HIV positive, even absolute, priest-endorsed monogamy isn’t going to protect you. There are still pockets of resistance, of course, but not all that many – even the catholic church is rumoured to be getting close to approving condoms for use by married couples where one partner is HIV positive.
These days the background is different – there’s still no cure, of course, but effective treatment is available, and the danger becomes that the world’s attention is shifted onto the problem of ensuring that even in poverty-stricken countries people with HIV and AIDS can afford the drugs they need. It’s important to make sure they can, of course. Personally, I’m more inclined to support people who call for world trade to be reformed so that poor countries can afford to buy the drugs themselves than I am old-fashioned charities which try to raise the money to buy the drugs and then donate them (mainly because the problem is, it seems to me, too large and too long term to be dealt with entirely by charity), but both methods absolutely have their place. But it’s important to simultaneously keep up the momentum on education and HIV prevention campaigns.
This simultaneous approach is the strategy that’s being pursued by UNAIDS (the inventively named united nations body charged with overseeing and coordinating responses to the AIDS pandemic). Most countries in a position to donate money are signed up. The UK is the second largest donor, and contributed more than $48million in 2007 – something to be proud of, I think.
All of which makes it unfortunate that, as a result of local budget cuts, free condom distribution schemes in the UK are being scaled back and, in some cases, stopped altogether. It doesn’t matter whether somebody lives in Soweto or Salisbury, after all, a few pence spent on giving them a free condom, and advice on how and when they should use it, makes good economic sense when it’s compared to the cost of a lifetime on medication. It also saves on the personal and emotional costs of an HIV diagnosis.