World AIDS day

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.

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7 Responses to World AIDS day

  1. Mandy says:

    Hi Aethelread

    I remember the ‘outbreak’ (for want of a better term) of Aids in the 80’s. I remember the bigotry. Someone at work actually said they thought it was a sign from God. This person was a friend and I felt obliged to say (because it is what I believe) that God had nothing to do with it. Rumours abounded that it was a scientific experiment that had gone wrong or it originally spread because somebody had had sex with a monkey!!!! I kid you not.

    Not only that but people thought they could catch Aids from toilet seats. People got quite hysterical about it. In that kind of mass hysteria that spreads like Chinese whispers way.

    The film “Philadelphia” was an eye opener for me…not that I was wrapped up in the hysteria but not knowing anyone with Aids, I didn’t really know how it affected people. I assumed I did but I really didn’t.

    The tragedy for me in regards to sexual activity in this day and age is 2 fold…although the cases of Aids in this country seem to have levelled out, although I am not sure of the statistics over the last 20 years so that might not be the case…… the cases of sexually transmitted diseases are on the rise. Young people, from what I know of them when daughter was in her earlier teens, did not practise safe sex and I don’t think there has been a revolution in regards to that over the last couple of years. I was relieved when daughter assured me that she would always make sure protection was used and as much as any parent can know she still does. The second fold is that people are still dying en mass in Africa of this disease. Again, I haven’t got the exact statistics but it is a human tragedy that should not be ignored and although I am liberal in regards to people and whatever faith they chose to follow, I think the Catholic Church needs to wake up to the fact that people will have sex and that their lives (the duration and quality of) are more important than some doctrine that is irrelevant to the fundamentals of being a human. Maybe contraversial but that is my view.

    It is great that there are now medications that can alleviate symptoms and prolong the lives of HIV and Aids sufferers. I do think more needs to be done in regards to raising awareness of people’s (particulary young people’s) responsiblities for themselves and other people. I think schools and possibly parents are still prudish, or maybe embarrassed, to tell it how it is.

  2. Alex says:

    I’m lucky to be part of a generation of Britons which has largely avoided the worst of the HIV/AIDS crisis. I don’t know anyone who’s HIV+, let alone lost anyone to AIDS. So I don’t know if it’s possible for people like me to ever completely understand. I think having people share their experiences helps, though; it builds an understanding that’s invaluable.
    Also, I wanted to point you in the direction of a slightly older gay blogger, who’s written a couple of things about his experiences back when AIDS was something ‘new and modern’, here and here.

  3. cb says:

    Great post. I think in some ways the importance of World AIDS Day grows as people become almost complacent about it. Sometimes I’m surprised at the levels of stigma that still remains. One way the UK can also improve things on a minor level is to look at how they go about deporting HIV+ people to countries where there is no effective or widespread treatment plans in place.

  4. An incredibly thoughtful and insightful post. I have to say I couldn’t write anything half as well written as this. I agree with a lot that you have to say.

    I did quite a lot of work on the history of HIV and AIDS when I was in uni. One of the key things I looked at was how the discovery that HIV was a virus and could be transmitted between heterosexual partners changed the way that the condition was viewed. It was hard to imagine the world where everyone thought it was only a disease that could affect gay men. People really didn’t believe heterosexual people could get it at first. Things have come on a long way, but it’s still scary how far we have to go. Lets just hope we keep making progress.

  5. aethelreadtheunread says:

    Thanks for all the comments.

    Mandy – wow, a mega-comment, excellent! It’s usually me leaving those over on Teenage Misanthropy… ;o)

    I remember a lot of the early bigotry too, although as a kid, so my memory is possibly a bit warped. But all the talk of ‘the gay plague’, the ‘danger’ of using toilet seats (even bus and train seats) used by positive people, the churches that started offering communion wine in individual disposable cups. I remember the ‘christian’ response too, with ‘moderates’ saying ‘It’s an opportunity for sinners to re-connect with the love of god before they are consigned to hell’, and hardliners going the whole hog with bumper stickers and posters that read ‘AIDS is killing all the right people’. Against that background, frankly, it’s a wonder i ever found the guts to come out…

    In terms of statistics in the UK, the number of people living with HIV is currently at its highest ever level. Partly that’s a good thing – people are living with HIV rather than dying of AIDS – but numbers of new diagnoses are also on the rise (although still lower than they have been in the past), and surveys suggest that teenagers today are less aware of how to avoid HIV infection than they were 20 years ago. I think you’re right to identify more and better sex education in schools, and from parents, as the solution. Unfortunately, we live in an era when a tiny but highly vocal minority of religious people are seeking to control the sex education agenda by pushing the idea “don’t have sex” instead of the idea “have sex if you want to, but have it responsibly”. It is (he said, understating wildly…) rather frustrating.

    Alex – sorry, first of all, that your comment got blocked by the spam filter – i’d relax the rules on the number of links to allow in a comment, but then my blog would disappear under an avalanche of adverts for online casinos and car insurance… ;o)

    Thanks for the links to Joe.My.God. – i do check out his blog from time to time (on the strength of your reccomendations on your own blog), but i’d missed those posts. As you say, it’s hard for those of us who weren’t part of that generation to fully understand what it was like, but moving personal accounts like those go a long way towards making it real.

    cb – thanks. Your World AIDS Day post is excellent too, and you’re absolutely right to focus on the stigma that’s still around. I agree with you on the point about deportation, but then, for my money, the UK’s immigration and asylum policy is monstrously inhumane all the way through. I mean, we lock up kids whose only ‘crime’ was to be brought to this country by their parents – it’s not like the kids were ever offered a choice of whether they wanted to come or not. [end of off-topic rant] :o)

    intothesystem – well, i don’t agree with you when you say couldn’t write something like this – i’m sure you could, and better, too! :o)

    You’re right, it is hard to imagine a world where people thought only gay men could get ill, but, initially, that’s what the data seemed to be showing. I might be wrong on this, but i’m sure i read somewhere that the persom who came up with the first name for AIDS (GRID – Gay Related Immune Disorder) was himself gay, so it wasn’t all homophobia. Some of the early theories about what caused GRID were bizarre, though – a popular one was that gay men were exposed to so much of each other’s bodily fluids that their own immune systems just gave up. Bizarre 2 ways round – 1) why hadn’t the condition been around for as long as there had been promiscuity (i.e., for ever)? 2) why would their immune systems give up? Normally when someone’s immune system is put under stress it overreacts (as in allergies and rheumatoid arthritis), not underreacts.

    Thanks again for all the comments.

  6. I suspect you are right on the GRID naming front. I wonder if I can find a copy of my essay. It was an interesting one to research, although difficult. Surprisingly little has been written from a historical perspective on the condition, although I believe my lecturer was working on something. I am quite keen on doing some further study in the field of history of medicine and it would be a topic I’d be interested in pursuing further.

  7. J. Wibble says:

    We (myself, my partner and two of our friends) went to the World AIDS Day vigil in the city centre yesterday, it was so moving. There were about 20 people altogether stood around a wreath while some people from a local charity did readings and a one minute silence, and then we left messages tied to the wreath. There was a lot of sadness, a few tears, but also a tremendous sense of hope – hammering in the message that the major issue in the UK now isn’t that treatment isn’t available but that the stigma and fear surrounding HIV/AIDS is so great that people avoid testing and treatment because of it. It is terrible that people die because there is no treatment, but it is even more horrifying that people are dying when treatment is available because they are too scared to seek it.

    I don’t know anyone who is HIV+, never lost anyone to it, but I know all about the stigma and the fear. I remember my mother telling me when I was a teenager never to get an HIV test because I’d never be able to get a loan or a mortgage or maybe even a job, even if it was negative. She also told me never to have sex with gay men “because you’ll get AIDS and die”. Those kinds of attitudes are what kills people – especially heterosexual people who still believe that HIV is some kind of ‘gay plague’ or something that only happens to drug addicts.

    I also can’t believe that there are still religious leaders telling people that using condoms is sinful, that HIV is a judgement from G-d, that people shouldn’t take the drugs that will keep them alive. I don’t know how they sleep at night.

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