Memories, may be beautiful and yet

What's too painful to remember,

We simply choose to forget.

Barbra Streisand: The Way We Were 

As you get older things come back to you out of the blue. They do. Unannounced, unexpected and unwanted most of the time and usually in the quiet, more contemplative moments when you just want to switch off and not think of anything.

When you’re young, you’re busy building up libraries of experiences and memories and filling your head and heart up with trivia and absorbed knowledge. When you’re older, your memory banks are stuffed to the gills and although you may not be able to remember what you did yesterday, your childhood and later years will burst out of dusty memory files, in spontaneous clips of recollection and without apparent rhyme or reason.

So it is with me and especially concerning HIV. Not only HIV actually but almost every mistake I ever made as a child, teenager or young adult reappears to jab insistently at my conscience again.

Some of them are still too embarrassing. I just have to shrug them off with a shudder and a, ‘can’t cope with that now’ sort of thing. However others are things I never imagined would resurface and although uncomfortable, probably need to be faced.

The HIV memories though, are a special category to themselves and they’ve been interrupting my present life with unnerving regularity lately. It’s probably to do with accepting your mortality and all that sort of amateur psychoanalysis and I admit, that is a tricky concept for me but I also believe that there’s nothing wrong with revisiting horrors and traumas. I’m not looking for any sort of closure; people with HIV don’t get closure until their last breath but I find it therapeutic looking back and knowing that I can deal with it now when I couldn’t at the time.

Here in the Netherlands, the death surge due to the virus came a short while after that in the US. We looked across the Atlantic in slight disbelief, at the stories that were emerging out of New York, and San Francisco. It just didn’t seem a global threat at the time because it wasn’t happening here on the same scale. Of course people were beginning to die, especially people working in the airlines and other international companies at the same time but unless it touched us personally, we carried on pretty much as normal. Then my partner and I slowly but surely learned of friends and acquaintances being infected and the hospital, house visits and funerals began.

The first memory that came back to me recently was of a friend who was what you would call a ‘snappy dresser’, someone who took pride in his appearance and enjoyed life to the full. When his face and body became covered with KS lesions and his mouth was constantly surrounded by saliva, I remember thinking that it had little directly to do with me and still felt somehow detached. I wasn’t cold-hearted or unemotional; at that time, I just felt that this sort of thing could never invade my own life.  What I do remember, is how sad it made me feel that someone so vital and so fastidious about his appearance could be so quickly reduced to those purple blotches and little else.

When he died, my partner and I were given some unimportant, small things but above all, his clothes and I still break out in a cold sweat remembering how odd that felt and how ‘wrong’ somehow. I also can’t remember his funeral and that troubles me. Maybe that will come back one day too.

What these memories do allow me to do, is come to terms with my dispassion at the time. I was naïve and I realize that now and maybe it’s a human reaction to separate yourself from reality in order to protect yourself. Soldiers at war must do it all the time.

Another awkward recollection that surfaced recently was that of a colleague and friend who calmly told me one day in the staff room at school that he was positive. I was shocked but not surprised. Of course I knew he was gay and knew a little of his personal life and although his behavior was no more risky than the rest of us, we were all slowly becoming more aware of the dangers and the consequences. He carried on teaching for quite a while and to his eternal credit, told the head of the school and school governors straight away. This memory is a positive one in that I was and still am, full of admiration of the way they handled it. These were early days and yet the school supported him through thick and thin and although he was teaching young children who had daily accidents with bleeding and bruising, they trusted him to always do the right thing and he did. I somehow doubt that school authorities would be so understanding these days and that’s really sad.

I was one of the last people to speak to him as he lay dying at home and it was his compassion to me as I struggled to hold back the tears that sticks in my memory. He took my hand, said it would be okay and that he was okay with it and then said goodbye; with meaning. An hour later he was gone. Yet in the memory that recently came back, I remember most clearly the white pimples on his face which I know now were probably caused by the medication. Strange what sort of things stick in the memory!  I had to speak at his funeral in front of his friends and family, other teachers and one or two parents and it was unbearable. Needless to say, I didn’t do a great job of it and only just struggled through to the end. That still feels so bad because I’m sure he would have been far more composed had it been the other way round.

His partner was the next to go in our circle. We didn’t know him that well but had got to know him during the last months of Steve’s life. He was a young guy, cynical and street-wise and we visited him in his last weeks too. That particular memory hit me in the middle of the night sometime last week and took me back to his small, third story apartment with white walls and dozens of religious icons, paintings and statuettes filling the place with a church-like atmosphere. It was almost surreal seeing him so ill in that context but I can still see those religious symbols and still recall how ironic I found it at the time. 

I recently saw a documentary about how AIDS struck the Dutch national airline KLM pretty severely in those years. The airline kept much of it hidden from the public which may seem slightly underhand now but behind the scenes, they cared for the victims and their families and went out of their way to ‘share’ the problem. The public silence was probably understandable at the time but the in-house after-care was impressive.

We had made friends with two KLM employees a year or so before and got on with them really well but they too eventually succumbed to AIDS. Those memories are luckily of good times and laughter and not so much of the details of their deaths. By that time, nobody was surprised anymore when they heard that someone in their circle ‘had it’. You and they got on with it and you did what you could when necessary. The virus had made us all into cynics with walls but also people who learned to deal with it when it happened.

That built-up experience probably saved my sanity when my partner also became ill. No details necessary here but among the memories that flood back more often than ever these days is that of driving to the hospital every day with his mother, just hoping above hope that the doctors had found something new to try. He had a PCP type lung infection and lay there, a skeletal shell of the man he used to be and there seemed to be only one inevitable outcome. He’s since told me that looking in the mirror and seeing himself as he was, shocked him into triggering a subconscious fight back which probably saved his life; plus the fact that the fantastic doctors found an antibiotic combination at the last minute which allowed him to slowly claw his way back to health. Much of that time is still a blur. More specific memories will probably emerge the older I get.

I frequently think of the effect that had on his family and friends. His sister came up from France with her boyfriend, who stood the whole time at the foot of the bed like the angel of death and didn’t say a word. There was something both weird and spiritual about that at the time but really, I don’t think he knew what else to do.

My partner’s best friend since his school years also eventually visited after putting off and prevaricating because she couldn’t cope with it. She wasn’t much use, bursting into tears and staying about ten minutes. I understood that perhaps better than he did but he never forgave her and they never spoke again. Other disappointments with other friends and acquaintances at that time aren’t worth remembering but they were there.

My partner survived, recovered to his old self and despite two serious illnesses since, is still going strong and although we eventually split up, we still have a close relationship. What doesn’t kill you makes you stronger eh!

So that’s what’s increasingly happening to me in my old age. The past drifting in and out of my consciousness like so many ghosts. I can’t shut these recollections out because I can’t predict them but then again, I’m glad of them because they allow you to revisit situations in glorious memory technicolor and re-evaluate what they meant. I still can’t remember what I did two days ago, or who played what on the TV but memories from long ago seem to pop up via a smell, or a taste, or a tune, or just in the empty quiet times between living.

Perhaps as you get older you have more of those times and your memories get the chance to sneak in because your brain isn’t so hyperactive. At first, I took it as a negative sign that I was speedily heading into senility because I remember my grandmother doing the exact same thing but now I’m glad that these things come back because we never take photos at the time; or perhaps that’s exactly what our memories are.

I don’t know what possessed me but it was a Friday night and I’d been stuck inside for what seemed the whole winter. I had a severe case of cabin fever and had to get out. It was nine thirty in the evening; a time when I’m normally fixated on the box and longing for my bed because the feet are playing me up and I feel like crap. Then out of nowhere came this urge to go out and meet people - gay people.

There was another motive. I’d been contacted via the internet by an attractive man just a couple of years younger than myself. Cultured, interested in the arts, music, seen a bit of life and wanting to get to know someone at least superficially before hitting the sack; you know the type. He’d expressed interest in a meeting and said that he was in the bar on Friday nights and specifically, this Friday night.

Now despite my dotage, I’m not stupid and fully realise that that is not a date under anybody’s definition. He hadn’t arranged a time, so clearly wasn’t so interested that he wanted it contractually bound. It was a vague, ‘maybe I’ll see you there’ sort of thing. Nevertheless, it was the deciding factor and I decided to give my need for social contact and the possibility of something more a go; you should never give the needy half a chance!!

The last time I’d been to a bar in Amsterdam was probably two or three years ago. I can’t be more specific because my memory about that sort of thing’s shot to pieces these days. One of the reasons is that the bars are soulless deserts until about ten thirty at night and don’t get busy until after the witching hour. By that time normally, I’m in a medication-induced half-sleep and battling the demons in my feet and legs. This particular evening however, I was wide awake; in less discomfort than normal and seized by the need to take advantage of every window of opportunity my neuropathy gives me. Nevertheless, I knew that just getting to the nearest bar wasn’t going to be easy, requiring some walking and a tram ride and taking the walking stick wasn’t an option, so I took an extra pain killer just in case.

Now I’ve learned a thing or two over the years and in preparation, gave myself a serious talking to. I awarded myself ten self-confidence, bonus points to start off with, with the aim of hitting more before the evening was over and knowing that point zero was the time to come home. For those who don’t understand, these are the single guy’s imaginary boosts to his confidence designed to make him feel good enough about himself during the evening ahead and help him through the first hour or so, or at least until drunk enough not to care anymore. 

Then came the hour of primping and preening in the bathroom. Don’t laugh, the older you get, the longer it takes to achieve even looking your real age! So nose hairs, ear hairs, wayward eyebrows, goatee and side burns were all dealt with. Showering, scrubbing, hair washing and personal hygiene all scrupulously done. 

Clothing was the next problem. It’s still winter, so showing off the hairy chest under the T-shirt ‘V’ wasn’t an option and I needed a top jacket that would have enough pockets to stuff the cap, gloves and scarf in when I got there. I settled for good-fitting jeans and a shirt big enough to hide the spare tire. Both jeans and shirt were dark coloured. I wanted to blend in, not stand out like a geriatric peacock. So, finally satisfied that no matter what I did, I wasn’t going to improve the best I could be, I set off on my little adventure.

I was heading for a bar that I thought would be the most comfortable and least intimidating for a first venture out in a long time. From what I remembered, the patronage was a mix of bear types, bar flies, bored tourists and Asian boys with their mentors, plus the odd complete psycho to liven up the proceedings. More importantly, it was generally a slightly older crowd and I wasn’t going to expose my fragile ego to a bar full of narcissi (is that the plural of Narcissus?)

When I arrived outside the bar the feet were playing up, the butterflies were doing the fandango in my stomach and I nearly turned around and went back home. I had to lecture myself; ‘For God’s sake, you’re 63, not some virgin teenager hitting the scene for the first time!’ The virgin teenager in me was screaming to get the fuck back home but bravado won out and I walked in.

Now body language is everything during the first two minutes when you walk into a bar. I knew this and had rehearsed the casual confidence and natural half smile that were necessary but still stumbled in with two left feet; fixed my rabbit-in-the-headlights stare on the row of stools at the bar and flew, jet-fuelled onto the nearest vacant stool. One of my ten self-confidence bonus points already gone and the evening hadn’t even begun. Not a great start and the disinterested glances that greeted my arrival seemed to go on for hours. Nevertheless, once ensconced on my stool, I felt more at ease and ordered a beer from the grizzled barman. The last time I’d been here, this barman was on my wish list for Christmas but time takes its toll on us all,l I guess.

A beer wasn’t a good idea considering my medication but it was ordered before my rational brain kicked in. Oh well, one wouldn’t harm. Actually, after five minutes, most of my fears were ebbing away. One thing about gay bars in Amsterdam is that they never change, never! The bar owners are too tight to invest, the few tourists that still come find it quaint and the local clientele is not that demanding. The only thing that moves with the times is the price of drinks. Three and a half euros for a small beer; good grief!

My favourite begin to an evening had always been perching on my stool, with my back to the wall and with a good view of the circus. Taking time to case the joint and see what, who and where was essential, especially if I was on my own. See but not be seen was the motto, at least in the beginning. I began by looking around to see if internet guy was here and then realised I wasn’t entirely certain I’d recognise him if he was; there’s a certain generic look that I find attractive but lots of guys have that look and no matter how much I tried, I couldn’t really recall his profile face clearly. I had to hope that he would find me first. Actually, the bar that Friday was not exactly teeming with ‘my types’, so I was pretty sure I hadn’t missed him.

There were two guys whom I recognised from twenty years ago. The difference being that now they were both bursting out of their T-shirts like Arnold Schwarzenegger and were probably just as old. Always intimidated by muscle Mary’s, I bitchily concluded that these guys were steroid queens but nevertheless still slumped over my bulging stomach on the stool. One more point lost!

There was a clique of a few really young guys acting like humming birds round a feeder. They were hyperactive and alternating between frenzied chatter amongst themselves and flitting to the bar to flash impossibly long eyelashes at whoever might buy them a drink. 

Another group was gathered round the pinball machine. These were lads in their late twenties; smartly dressed, short hair and street savvy. These guys are at the peak of their game and know their own pulling power. I used to be like that for a few short seconds in time. However, that didn’t shake my confidence; I’ve never been into younger guys so I didn’t see them as intimidating, until that is…

…I’d been staring for too long. I realised it at the very second that one of them turned to meet my gaze but it was too late. The lip curled into a Presley sneer and the eyes narrowed, gimlet-like, into bullets of sheer venom. As he turned to inform his friends that the perv in the corner was eying him up, another self-confidence point bit the dust. The collective group glare that followed nearly lost me another point but by that time I was ordering another beer I shouldn’t drink and considering flight.

For the next few minutes, I counted all the spirits bottles hanging behind the bar; fixated on the mechanical porn on one of the TV screens and tried to regain some self-control. Luckily I was rescued by a tap on the shoulder. Thinking it was the guy from the internet, I turned optimistically to greet my saviour. It wasn’t that guy but it was someone else that I half-remembered from years ago and he looked pretty good! After confirming mutual recognition, I bought him a beer and he sat down next to me. My twenty five year old internal man-about-town, returned and the next half an hour was spent chatting, catching up on mutual friends and subtle but unmistakeable flirting. The restoration of a point to my confidence chart came from the fact that he was also flirting with me! And he wasn’t drunk and didn’t seem to have any hidden agenda; yippee!

Okay, to cut a long story short; I’d repressed my needy gene, brought about by a long time without this sort of contact and was playing it cool. I was proud of myself because everything was in control and we had clicked. You know that feeling when it’s just right and you know you’ve read the signs and body language correctly. It got to the point where I was musing on the evening’s end and what I’d do if internet guy walked in. Overconfidence; fatal!

He asked me if I’d like to get out of there and go back to his place nearby. I contained my excitement and feeling like that teenage virgin again, demurely accepted. Trust my rational mind to choose that moment to poke me in the conscience…’Ahem, aren’t we forgetting something!’ I swear to God, I got icy chills but came out with it anyway. Lowering my head close to his, I uttered the words!

“By the way; I think you should know; I’m HIV positive; is that going to be a problem?”

I honestly thought it wouldn’t be but that was completely my own fault. By his look and his conversation, I’d sort of assumed he was too. Big mistake; never judge a book by the cover! He recoiled as if I’d thrown my beer over him and I could see him struggling to remain politically correct:

“ Uhm…yeah, well you see…I didn’t realise…uhm… no I can’t do that, I’m sorry. See you around.”

Two immediate confidence points lost right after the look he gave me and one more after the excuse and I felt as though someone had hit me with a sledge hammer. I was furious but not at the fact that it actually was a problem; that’s a risk we all have to live with but at the lily-livered, cowardly response! This was a guy who had lived in Amsterdam for most of his life; was not much younger than me and must have lived through the HIV/AIDS years and yet he couldn’t get away fast enough, despite apparently finding me sexually desirable just five minutes before. Talk to me damn you!

Only five bonus confidence points left and they were barely keeping me from running out of the bar in hysterics. I decided to wait another half an hour to see if internet guy showed up and had prepared every available barrier to that being a potential disaster too. This time, I would ask him right out first but even then I knew that I’d still have to confess sooner or later. The eternal optimist kicked in then and the third beer was ordered. I was feeling somewhat woozy but nevertheless perversely proud of myself. I hadn’t always disclosed at the right time and realised that I’d overcome a subconscious barrier without really trying. I felt I’d be telling every time from now on; not that the opportunities were falling at my feet but there you go, three beers can work wonders and blunt edges.

It was getting busier but it remained the same eclectic mix that I was comfortable with. I accidently caught the eye of the younger guy from earlier but this time my lip curled first and he got ‘the look’ full in the face. Revenge is a sweet bitch, however small the victory.

Suddenly my sixth sense alerted me to the fact that I was being watched. It was a guy at the other end of the bar and he was staring unashamedly. Not bad looking, if a little worn around the edges. Now I knew I looked more than a little rough around the edges too, maybe there was a match here. I casually picked up my glass and putting on my slightly tipsy, ‘come hither’ look, stared back, more meaningfully. I think the penny dropped when his head suddenly lolled forward. He recovered quickly but the glazed eyes gave him away and when he dribbled as he leered at me, I got the message; he was completely out of it. Another point lost; I was being seduced by someone who needed to be blotto to do it; great boost to the ego that!

Okay, enough already. I looked at my watch and realised I’d been there for less than two hours. I got up, put on my coat and headed for the exit. Of course, internet guy chose that very moment to arrive and despite looking me full in the face, he walked right on by. With my remaining confidence points falling to the floor like leaves in autumn, I stalked out and went home.

It was okay, really; c’est la vie. It sounds like a good old, self-pitying rant but the evening had actually been good for me and I quickly realised it. I’d confirmed my place in the world at that snapshot in time and was okay with it. You’ve got to laugh at life sometimes, because it can never be a Hallmark greeting card: it wouldn’t be so interesting if it were.

It's morning, I open my eyes
And everything's still the same
I turn to the guy who stayed last night
And ask him, "What's your name?"

‘So Many Men, So Little Time’: Miquel_Brown 1983

I must admit, when I read this title quote by the much-lauded, British performance artist and TV personality David Hoyle, I thought it must be something from a late eighties politician and one not exactly gay-friendly. In fact, the very gay David Hoyle said it in 2007, on the day before World Aids Day and on the flyer for a night at the Royal Vauxhall Tavern in London, was added the following text:

 'All over Vauxhall they are fucking without condoms', it reads. 'All over Vauxhall they are dancing till Tuesday morning. All over Vauxhall they are taking G, K, C, V and E [that's GHB, ketamine, cocaine, Viagra and ecstasy]. All over Vauxhall they are dying.'

Depending on your viewpoint, this was either in your face, plain speaking by a prophet with street cred or the outburst of a gay artist, exhausted and frustrated by the hedonism of the scene in which he performs?

Let me try to put this in context. The numbers of new HIV infections in the UK have remained more or less the same between 2001 and 2011, despite awareness and sexual health education having reached practically all young people. So somehow, the message which is understood by everybod, is not being translated into action between the sheets. Despite the current youth culture being brought up with the mantra that safer sex saves lives, HIV cases are just as high as 15 years ago and are being fuelled by rampant alcoholism and drug abuse within the gay scene itself.

Now I can’t judge; I was young too once but sex, drugs and alcohol are a powerful cocktail and the potential for harm is self-evident on the gay scene. In Britain particularly, there is a cultural expectation amongst young people, both straight and gay, to get wasted on either drink, drugs or both. Sex is the climax to the evening but by that time, rational thought is by definition diminished.

There has been a spate of drug-induced deaths in gay saunas and clubs recently but even this hasn’t deterred people from giving in to peer pressure and the weight of gay social expectation. More stories are appearing of horrible situations where a partner who has been on GHB suddenly dies straight after sex. Apart from that and despite the lurid publicity many young people also seem to agree with the following from Time Out: 

“Several younger gay men I've spoken to in the past few months have argued that HIV is no big deal. They've heard about combination therapy, they've seen the ads with muscular men climbing mountains and they've jumped to the conclusion that life on anti-retrovirals is one long picnic. There are even the fatalistic few for whom contracting HIV is seen as some sort of rite of passage, or a stepping stone towards having lots of unprotected sex without having to think about the consequences.”

On the other side of the coin, Hoyle’s sentiment from 2007, is echoed in a recent article by Matthew Todd in the Guardian, titled, ‘The Roots of Gay Shame’. He says,

“If you didn't think you were worth caring about in the first place, why would you care if you caught HIV?”

The rise in HIV infections amongst older guys, shows that the problem is not confined to the ‘live hard, die young’ generation. In the older age groups, the causes may lie more in a rejuvenated sex life thanks to erection enhancers than the gay scene in which even the fittest older guy struggles to keep up. The risk taking, though, is proportionately as high. Maybe the older you are, the stronger the feeling that you’ve dodged the bullet so far, why should it change now? My HIV-specialist shakes his head, bemused at the sheer lack of logic regarding new infections in the 45+ groups. After all, it’s not as if they’ve not seen what can happen and no age group is better educated, so what’s going on in the gay psyche, both young and old, that shuts out reason at crucial moments?

"Do we really have an uncontrollable problem that nobody’s talking about?"

Was David Hoyle right? Are we part of a massive, subconscious suicide cult? Do we really have an uncontrollable problem that nobody’s talking about? We can surely assume that if it is happening in UK cities, other urban conurbations across the world will be similarly affected.

It may not be helpful to take the moral high ground either. Many people, will be quick to jump on the ‘serves ‘em right’ bandwagon and people living with long term HIV may also wag stern fingers but it can’t be as simplistic as that. Maybe it’s good that LGBT insiders like David Hoyle, are criticising behaviour from within the scene, however much it sounds like he’s betraying his own by speaking to the world at large. However, he’s not alone. All sorts of people from club owners to social workers are quietly bemoaning the consequences of unbridled hedonism and asking for it to be talked about at least. The point is that it’s not done to be a whistle blower in any social group but in this case something is clearly going on within the scene and could threaten resistance to the virus if it gets out of hand.

To my mind, however tempting it may be to come over as, ‘outraged from Amsterdam’, this isn’t a cut and dried moral issue. Very few people actively set out to catch the virus and there’s never been so much information available on every social platform. So why is a substantial group of LGBT people rushing lemming-like off the cliff despite knowing a hundred reasons not to?

I’ve got to disclaim here: many people go out socially, have a few drinks, meet someone and have safe sex with them – everything in moderation. Not everybody is socially reckless and having unsafe sex; the virus would be out of control if that were true. So I’m not talking about those who follow the ‘rules’ and live fulfilled and happy lives but the rise of a hedonistic culture which leads to a carpe diem attitude and if they get something, too bad. Enough people are spreading the virus to keep the statistics at a stable high. It’s almost as if for every ten converts to safe sex, ten ‘refuseniks’ emerge to take their place and then the stats never improve.

It surely has to be a social issue, with a very strong sexual component attached. You’re bought up in a society that still discourages homosexuality and encourages normality. You discover you’re gay and are immediately confronted with dilemmas over what to do about it. You may have a tough time with your family and at school and via school peer pressure, may take to distractions like drugs, alcohol and smoking even before you hit the gay scene. Heterosexual youth culture sees getting wasted as a rite of passage and then, with hormones raging, you take your first tentative steps onto the gay scene, where your insecurities are quickly masked by the availability of everything in the candy store. You then learn how to mask rational thought with excessive drink and party drugs and before you know it, your trousers are round your ankles, without a condom in sight.

So that’s maybe how it starts but god knows, there are enough social messages and pressures to make you think twice, so why do so many ignore them and wilfully seeking out yet more thrills without brakes. Even ‘normal’ STDs like, gonorrhoea, chlamydia and syphilis don’t stop them in their tracks: antibiotics for a few days and then back on the scene but it’s only a matter of time for many before the law of averages kicks in and hepatitis and HIV take their disease dossiers to the next level. Even then (and here lies the great unspoken problem) people aren’t deterred by disease; as long as it doesn’t kill them, they carry on regardless.

Why do they do that? Very few people can be sanctimonious about it; most people with HIV have slipped up somewhere and not just once and rejected reasonable behaviour. So what drives us to indulge in irresponsible behaviour; irresponsible for ourselves and irresponsible for others?

Maybe we underestimate what my ex-partner used to call, ‘the power of the cock’ and the nature of the sexual act itself. We all know that there’s a point of no return with sex and especially sex with strangers. You’re condom-aware throughout the encounter until the point where you’re going to do it or not and then desire, lust and your sex-drive determine your decision making and sometimes, the sexual urge is just too strong. We’re built that way by nature; remember the original idea was to beat off the competition and procreate like bunnies to extend your own section of the gene pool. It’s one of the most powerful human autonomic reactions and in the moment, very difficult to resist. If you have to break off to put a condom on, not only do you lose the moment and a part of the excitement but you have to have enough willpower to overcome ‘the power of the cock’.

"All you want to do at that point is have sex; the urge can be irresistibly strong, especially if fuelled by GHB and the rest. It takes a strong mind to unwrap both condom and lube packets and roll it on, with every chance that your bee has buzzed off to another flower . .  "

For many, the very act of putting a condom on is enough to lose them their erection  - and nobody likes that. So although we know we should and must, it’s not easy and your mind has to be at its most rational to do it every time. Put yourself in the situation where you’re on recreational drugs to get you through the night, possibly drunk as a skunk and you’ve exchanged ‘the look’ with a hottie heading for the darkroom. All you want to do at that point is have sex; the urge can be irresistibly strong, especially if fuelled by GHB and the rest. It takes a strong mind to unwrap both condom and lube packets and roll it on, with every chance that your bee has buzzed off to another flower. Morally we all know it’s wrong but it happens and the blame has to be shared between the person himself and the social pressures around him. It’s maybe those social pressures; the drink, the drugs and the social mores, that allow sexual impulse to overcome rational thought but it’s just as likely to be your own biological urges.

I think that maybe if we’re being realistic we will never achieve 100% safe sex behaviour and maybe we should be satisfied if the current HIV new infection statistics for each country remain stable. Aiming for the total eradication of HIV transmission, as HIV organisations trumpeted last year, can only come as a result of a cure or a vaccine because people’s behaviour isn’t going to change, however much you confront them with the facts.

This sort of thinking is, of course, blasphemous in the eyes of health organisations and socially conscious HIV groups. We feel we have to strive for the elimination of HIV but considering social behaviour in certain groups across the world, I’m not sure if we can by trying to change behaviour alone. Moralists can preach that we need to return to taking personal responsibility for our actions but take a step into a modern gay club and you can count on the fingers of one hand how many eyes that stare at you aren’t glazed, or hyper active. Party drugs rule! Pragmatism and not preaching is what we need.

David Hoyle and others see it differently. They believe that there’s something much deeper behind it all. It’s claimed that the apparent lemming-like behaviour amongst our youth groups, stems from shame and self-loathing, rather than outside influences like drugs, drink and hormones. It sounds like a very old-fashioned concept, stemming from the days when staying in the closet was more the norm than the exception. LGBT society was bombarded with messages that it should be ashamed of itself and its behaviour was disgusting to decent, god-fearing folks. It’s not something that you would expect to hear in these days of gay marriage and Gaga birth certificates that prove we were born that way. So what do they mean when they link HIV infection to shame and loathing on the gay scene?

The theory goes that internalised shame leads to compulsive behaviour and this is applied to LGBT people in the following ways:

Children are brought up to believe that sex and sexual relationships are wrong and sinful and gay sex sends you immediately down to Satan’s sin bin.

When they’re old enough to make relationships, society barks at them from every corner like rabid dogs that any relationship they might make has no value and actually causes a breakdown of society.

They learn that some people hate them enough to make their lives a misery of social network sites, or even attack them physically on the street.

They see cases of teenagers killing themselves out of horror at what they’ve become.

So it’s believed that people turn to compulsive behaviours to either compensate for, or hide from, their real selves. People become addicted to drink, drugs, smoking, porn and promiscuous sex, etc. This then leads to situations such as those on the gay scene, where safety is found in numbers and solace in collective substance abuse and sex. These feelings then become so embedded, you hardly know they are there. Becoming infected with HIV becomes a sort of culmination of the lifestyle and when it’s too late to turn back, people get a sort of perverse pleasure in the fact that they were right all along and their shame and guilt has led to this ‘deserved’ punishment.

The British and gay pop singer Will Young claimed recently that his own shame at being gay led to dysfunctional relationships and an addiction to porn. Now Will Young seems like an okay guy and someone fairly typical of his generation but is his claim purely personal or representative of many?

On the face of it, you would think that most of the sorts of behaviour that go on in many areas of the ‘scene’ are hardly symptomatic of shame and guilt. It looks to be more the result of a sort of arrogance and fuck you attitude which young people have had since time immemorial. Add to that the feeling that you’re immortal when you’re young and you have to ask whether guilt plays any part at all, never mind a subconscious collective suicide wish!

That’s the theory and although I may have described it far too simplistically it sums up what many people believe. Although I’m sure that many people carry guilt around with them like a Prada purse and some of them become compulsively obsessive; it by no means explains the problem, except as a sort of moral judgement based on amateur psychology. Why can’t we accept that young straight or gay people these days are just out for a good time because with the pressure that society brings to get a job and have more ‘stuff’ than the next man everybody needs an escape?

"When their own ‘elders’ preach the plague years and bitter experience and every gay site on the planet tells them to avoid HIV by all means possible, of course a percentage are going to rebel and do their own thing . . "

Possibly the only difference between gay and straight twenty-something’s, is that three letter acronym HIV. It’s such a loaded term that the pressure from society that it’s evil and morally reprehensible, leads to what all youngsters have always done; they do the opposite! When their own ‘elders’ preach the plague years and bitter experience and every gay site on the planet tells them to avoid HIV by all means possible, of course a percentage are going to rebel and do their own thing. After all, they’re immortal, right!

Maybe we need a more pragmatic approach to unsafe sex; accept it will happen and aim research at newer and more direct forms of prevention (effective anti-viral lubes for instance). Ease up on attacking the morals of those who indulge in reckless behaviour and concentrate on creating barriers to the virus, while at the same time taking active steps to change people’s recreational stimulant use. Stop treating HIV prevention as a moral issue maybe and concentrate on killing the virus.

It’s no good lecturing young people that they don’t know what they’re getting themselves into because a significant proportion will get themselves into it whatever you do. At the same time, I’d wager there isn’t an LGBT person on the planet who hasn’t felt guilty, or ashamed, or angry at some point, at the cards they’ve been dealt. But by no means have all of them ended up with HIV through reckless living as a result.

The title of this article is a brilliant sound-bite but in my opinion not very strongly grounded in the truth. I’m beginning to believe that the best policy is to mop up afterwards, do our best to give unbiased advice and a safe environment and go for the throats of drug dealers and exploiters just interested in making a buck. It may sound heretical to many but we’re all aiming for the same result it’s just the approaches that are open to debate.

‘Knowledge is power only if man knows what facts not to bother with.’

Robert Staughton Lynd

How much interest do you take in what you’re swallowing every day? Okay, wrong article: stop sniggering at the back of the class!

No seriously, do we know exactly what’s in the medications and supplements that we take and do we know what they do to our body and exactly how they affect our health? Of course we don’t and nobody reasonably expects you to. However, we do tend to bury our heads, ostrich-like, in the sand and blindly accept whatever we’re prescribed without having any idea what sort of risks and side effects are involved. Even with innocent sounding things like supplements and vitamins, we throw them down our throats in daily rituals because they sound good and should do us good but do we really know if that’s true?

On top of all that, we take recreational things like cigarettes, alcohol, sexual performance enhancers and anything else that will keep us up all night with the in-crowd. A hundred years ago the human body had never been exposed to such a cocktail of chemicals but of course more people died from disease and arguably had far less fun.

Speaking from personal experience; when I moved from one city to the other my HIV details somehow got lost along the way. I didn’t find this out until later, when I started wondering why certain combinations of drugs weren’t working for long and why my HIV-specialist was experimenting his little heart out. I casually mentioned that I shouldn’t be on one particular drug because I had been found to be resistant to it in my last town. He knew nothing about my resistance history but because the viral load wasn’t anywhere near high enough to measure it again, we had to go on until the right combo was found. Needless to say I was more than a little pissed that important details could be lost but had no option but to work with him. That’s the reason why I’ve had six antiretroviral combinations over the years but it did persuade me that from that point on, I was going to leave nothing to chance and keep a careful eye on what was prescribed for me.

I was still given things that did me harm (Videx and Kivexa for instance that brought rampant neuropathy with them as a freebie) but at least I quickly found out why. When the specialist put me on Truvada as part of a combination for the third time, after my kidneys had started showing alarming figures the second time; I was able to stamp my foot and ask him politely if this was wise. I’ve successfully been on a double-boosted regime for some time now (instead of the normal triple therapy) but when my blood pressure started soaring through the roof and my cholesterol figures were way too high, I was able to produce details of the right studies that showed that this was a result of the drugs and not a louche lifestyle (honest to god) and from that point on, the specialist knew that I wasn’t going to let anything more slip by without me knowing the risks.

The neuropathy was largely dealt with by neurologists and the circus started all over again. I was put on drugs with nasty side effects but again, because I’d done my research, I was able to recognize the problem, change the drugs and get the best possible pain relief for me. Much to his visible irritation, I’ve  unfortunately had to prove the neurologist wrong on several occasions since by producing up to date evidence as to why this that or the other just didn’t work. It sounds as though I was deliberately aiming to trip the doctors up but that absolutely wasn’t the case. I realized early on that they’re just human; they have hundreds, if not thousands of patients to deal with; they’re under immense pressure from time constraints, patient numbers and their hospital administrators and mistakes can be made.

The point is that most people don’t question their doctors; it’s just not done. They were brought up to respect the medical profession as some sort of untouchable divine force. That has changed and has to change. It’s the age of the internet network interaction and patients have access to possibly more information than the doctors themselves have time to read. The old adage that you should never believe what you read on the Net and other doctors’ standbys such as ‘a little knowledge is a dangerous thing’, just aren’t pertinent anymore.

To their credit, doctors are beginning to realize this and medical training schools lay much more emphasis on the concept of a patient/doctor partnership where knowledge can come from a variety of sources. It’s logical really; if you only have ten minutes for your doctor’s appointment, you won’t achieve much if the doctor has to explain your disease and the drugs he or she prescribe to you in detail in that time. That’s why, you walk away with a prescription but with little idea of what it’s going to do for you.

Medicine packaging includes lengthy pamphlets issued by the drug companies but they are designed to cover every option and their asses in case of law suits, so you will be faced by an encyclopedia of possible side effects which may worry you unduly and are too confusing to take in. Little wonder that most people do as they’re told and take the drugs according to doctor’s orders. If it goes wrong later, then that’s a problem for another day.

There are real benefits to doing your own research before the doctor’s appointment:

• You can find out why you have a problem, what the usual or possible cause is and what’s usually done to fix it.
• You can then approach the doctor with a certain amount of background knowledge and providing you don’t stuff it down their throats, or come across as arrogant, that will be appreciated because it saves so much time.
•  Most of the time, if you’ve established a personal rapport with your doctor, he or she will appreciate that actually, you’re taking a load off their shoulders. They can correct inaccurate assumptions but they won’t have to start from square one and the treatment will go ahead much quicker.
• You’ll be surprised how much the doctor then begins to respect you and your limited knowledge and the more research you do beforehand, the more it becomes a real partnership which makes the most of appointment times.

If you also bear in mind that mistakes can be made and resign yourself to the fact that shit happens and it’s no use flying into a hissy-fit about it, you’ll achieve health improvement much more quickly and what’s more be psychologically much more at ease with the process.

The same applies to the things we take which are largely outside the doctor’s control and that means, vitamins, supplements and many alternative therapies. Because we generally have to pay for these ourselves, you would think that we would be much more discerning about what we actually take and whether we’re actually just pissing our money away because things aren’t being absorbed properly. Of all the treatments meant to improve our health, vitamins and supplements are the most prone to advertising chicanery and the hard sell.

It started in the first decade of HIV/AIDS, when people were dying because the official treatments couldn’t save their lives. People grasped at any straws that were flying about in the wind and bought vitamins, herbal concoctions and supplements out of desperation. Rumors that this, that or the other, was a wonder supplement spread like wild fire and many people were taking 20 or 30 extra pills a day on top of whatever their doctors had prescribed. Some may have helped, others not but the point is that for us, the supplement industry boomed and continues to this day. It’s happened throughout history; the biggest money makers in the middle ages were the quacks who roamed around selling ‘cures’ for the plague to the desperate.

Now many supplements and vitamins can help you enormously if taken the right way but it’s possible that we are taking far too many things which aren’t doing us any good because we feel we should, or we’ve read the latest article about them, or because we daren’t stop in case the unquantifiable benefits disappear. In this way, many people still take masses of vitamins and supplements which build up and are rarely reduced.

We need to take responsibility for our own actions and again, the internet is an invaluable source of information. Try to steer away from commercial sites promoting their own products – they just want your cash - and read trusted sites which will tell you how to make the best of vitamins and supplements without wasting your money. You can also ask your HIV specialist or home doctor to test you for vitamin deficiencies but also other things like testosterone and cholesterol. In this way, if you’re results show that you’re already self-sufficient in those things, you don’t need to supplement. Many people living with HIV are deficient in certain vitamins but it’s always worth confirming that by a simple test. After that, do your research and base your purchasing decisions on the information you’ve found. It’s also advisable never to rely on one source for information; always get it corroborated by one or two other reliable sources.

Exactly the same applies to alternative therapies. Many people living with the complications of HIV, plus other conditions, try one or more alternative therapies to see if they help. There’s a feeling that if you’re avoiding chemicals in some way that alternative treatments are somehow better for you. If there’s a therapy (for instance, massage, acupuncture, aromatherapy, yoga and countless others) that fits your bill and genuinely helps then of course that is probably better than ingesting pills. However, although you may feel that you know what you’re doing, checking it out with your doctor first may not be such a bad idea. There are pitfalls and traps on the alternative therapy circuit too. Countless clinics will make exaggerated claims to be able to help, or even ‘cure’ your condition but it’s worth remembering that these are private businesses that are out to make money and your interests may not come first.

It’s always wise to check out therapists to see if a) they’re qualified in the field (and not just a vague, printed qualification from an unknown university, in a frame on the wall) and b) what their track record is like. Again, the internet and social media are excellent sources of information but even there, unscrupulous operators can log in on forums under a pseudonym and make wild claims of how brilliant their product is. If you’re going to give out your hard earned money, it must be worthwhile doing your homework first – there are so many shysters out there who are only interested in your bank balance and not your health.

So the point of this article is not to lecture people about the decisions they make but to encourage people living with HIV to be a little more responsible for their own treatment, whatever form that may take. It’s the age of rapid information exchange and although not all information is trustworthy, there are enough serious HIV sites to provide you with all you need to know about living with the virus and its complications. The medical profession has never been under such pressure from all sides and the rise of aggression in the waiting rooms and hospital departments show that patients are becoming frustrated too.

However diligent a health professional may be, he or she doesn’t really know you and how your body is reacting to medication or treatment. Mistakes can be made and if we want the best possible help for our conditions we should really be prepared to take some of the responsibility and acquaint ourselves at least with the basic background information. In that way, we’re helping our doctors make better decisions because we can fill in the gaps that a ten minute consultation won’t allow. If you’re concerned that you have an unexpected problem and know that others have experienced the same things, you can take your evidence and point this out to your doctor, or be reassured that you’re not alone. You’ll be amazed at how much more seriously they will take you and how much more directed your treatment will become. Doctors rely on a lot of guesswork based on their own knowledge and experience but you can make their task so much easier in your own case by learning what’s normal and what’s abnormal for your body. This is how partnerships are made and how you can actually make your doctor your friend, if you approach it in the right way.

The medical profession is learning that the internet can be an ally and a useful tool; surely we can do the same; it’s in our own best interests.

HIV medications, doctor patient relationship, HIV knowledge, vitamins and supplements, alternative therapies

It’s very difficult, and perhaps slightly arrogant, to write about a continent you’ve never been to and about people you have never met and about a lifestyle you’ve been lucky enough to avoid - but I’d still like to bring this subject to your attention. I’d love to be able to write that I’d visited…and spoken to…and heard about people’s lives and done something concrete to help but I can’t. That doesn’t mean that the information you may see here is any less relevant. I can read and watch our world as it shrinks to YouTube size and from what I can see from a distance, HIV positive children in Africa need as many people to speak up for them as possible.

Having neuropathy as a consequence of HIV may give me a tenuous, personal link to these children living with HIV-related pain but these are children, not adults and children find it so much more difficult to put their pain into words. As an adult, I find it difficult enough to describe my problems with neuropathy; how much worse must it be for them when they don’t understand what’s happening to them, or why?

Please allow me to introduce you to Susan, whose son Jethro died in terrible pain two years ago. Susan is HIV positive and Jethro was too. Susan is a community health worker and lives in Kibera, the largest slum area in Nairobi, Kenya. Jethro was an active 5 year old, who loved going to school, playing soccer with his friends, practising Tae-Kwon-Do and watching movies. A little boy like millions of others across the world; except that he had been born with HIV. He was lucky enough to be on retro-viral treatment but he was in a lot of pain. The pain was mainly abdominal and possibly partly due to the severity of HIV medications on a young body. He also suffered severe chest pains from time to time. His mother gave him over-the-counter pain killers but they were nowhere near powerful enough to help; the pain was just too strong. He needed proper palliative care and access to controlled, morphine-type drugs to raise the quality of his life.

One of the biggest problems in both Kenya and many other African lands is the lack of organised palliative care and the lack of resources for children with HIV.

One morning Jethro woke up and told his mother that the pain was just too severe to go to school. Susan could see how it was affecting him because his body was stiffening from the agony. She could see how much he was struggling, especially when he started screaming…

He died in terrible pain.

Imagine yourself in that situation. As an adult you would be able to rationalise your pain to some extent and be able to describe it to others and maybe even know what sort of help was necessary. This was a little boy who could do none of that and just wanted it to go away. His mother could see how much he was suffering but had neither the means, nor the knowledge to make it better for him. Multiply Jethro’s case by hundreds of thousands and you have the reality in many sub-Saharan lands struggling to cope with the consequences of HIV. You can watch Susan describing what happened in this short Human Rights Watch video here;  it’s only 2½ minutes long. Sometimes words are just not enough! 

One more person I’d like you to know about is Sammy. Sammy was an orphan, whose mother had died of HIV complications when he was only four. After that, he was taken in by the Nyumbani children’s orphanage for children with HIV, in Kenya’s capital, Nairobi. Just like Jethro, he was also an active little boy, who loved playing with his friends and displayed above average ability in school. He is remembered as being brave and strong until he developed resistance to the anti-viral drugs he was taking. Unexpectedly, he became paralysed on one side and could no longer talk. The people looking after him felt helpless, especially when it was obvious from his crying, how much pain he was in. Eventually he was given morphine to help with the pain and in this respect he was lucky because it meant that he would eventually die peacefully. Nyumbani orphanage however, is unusual in being able to provide this sort of palliative care. As the head of the orphanage says:

“As a human being, we cannot ignore a child or a person in pain when there is the possibility of drugs like morphine. The children who are sick don’t have any voice to raise.”

You can see Sammy’s story for yourself here in another very short Human Rights Watch video – the pictures make it so much more valid.

These are only two examples of children’s sufferings with HIV related illness and death and it would be grossly unfair to single out Kenya, when most countries in the region have exactly the same problems.  There are often limited counselling services for families of chronically ill patients but very few programs for children. Besides this, most sick children are cared for at home where there is a clear need for easily-available, low-cost palliative medication. The problem is that governments have greater priorities and many social workers in the villages don’t have the necessary knowledge or training when it comes to severe pain management. What they do have is experience of how children can suffer in these situations but even when medication is available, many doctors or nurses are afraid of prescribing things like morphine for children; so the suffering continues.

Did you know that nine out of every ten children with HIV live in the sub-Saharan lands of Africa? Roughly three million children are infected; the vast majority of whom have contracted it from their mothers during pregnancy, delivery or breast feeding. Now in Western countries, anti-retroviral medicine is available which will allow HIV-children to live almost normal life spans but free medicine is only available to a tiny percentage of children with HIV in Africa. Why is that? They need it more than anyone because they are the future of their land.

In South Africa alone, where the country’s wealth is better distributed to their people living with HIV than most; 38,000 babies are infected at birth every single year and in most other southern African countries, the figures are worse. So you can see what’s happening and the brutal irony of the situation. A huge peak of orphaned children and children born with the virus is building up. In the region, approximately 12 to 14 million children have lost a parent to HIV/AIDS.

Forget the medical consequences which are horrific enough; what about the psychological and mental health effects on several generations who will be needed to help keep their countries’ economies going if they reach adulthood!

“No child should be born with HIV, no child should be orphaned from HIV, no child should die from HIV”
11 year old HIV orphan, Ebube Taylor, speaking to a UN panel.

Of course progress is being made but not quickly enough. Every day, some 1,500 children under the age of 15 are infected with the virus! When does a problem become urgent enough for the world to take action and not just leave it to governments that are paralysed by the extent of the problem and the inefficiency of their own economies?

Children are powerful voices for change but only if they can be heard and for some reason, the subject is just not ‘sexy’ enough for the world’s media to get behind – it really is nothing less than scandalous; or am I over-reacting?

Part of the problem is that many people underestimate the range of health problems many African children are exposed to. It’s not just HIV; although reading the headlines you would assume it was. Children suffer disproportionately from other life-changing and potentially fatal conditions such as: cancer, tuberculosis, malaria, severe malnutrition, severe disabilities from accident, disease or war, genetic abnormalities, organ failure and neurodegenerative conditions such as neuropathy. These are just a few of the problems that sub-Saharan children suffer from far more than their 1^st World counterparts. Add HIV to the mix and life doesn’t get much harder for thousands of kids.

Here’s the thing: pain is inevitable but at the same time optional! With the right resources, these children can have their pain made bearable. The cause may not be removed but the effects certainly can. However, because so many are not diagnosed and seldom complain, the correct pain medication (if available) is not administered. Even if they are diagnosed as suffering from HIV-related pain; the resources aren’t there to ensure follow-ups and re-assessments. It may be socially frowned upon in those countries to complain of pain, especially when there is so much visible suffering around them but surely a simple and universal pain scale for African children could be designed to at least identify the strength of the suffering? In that way, if all children are screened, individual cases can be very quickly identified.

Another huge problem is the continued and widespread use of the so-called, ‘d-drugs’, Stavudine (d4T) and didanosine (ddl, Videx, Videx EC) as HIV retrovirals in African countries. Despite the fact that they are renowned for causing peripheral neuropathy, abnormal body fat loss and lipoatrophy, they remain the main treatment for HIV in many lands. The number of children with painful neuropathy is alarmingly high. Remember, this is a condition for which there is no cure as yet and children have to live with the symptoms for the rest of their lives. It not only affects the quality of their lives but makes them more or less unproductive in society. In many parts of rural Africa, if you’re unproductive, you’re made to feel worthless. You’re a child with HIV; maybe an orphan and you can’t contribute to the society you live in – how must you feel?

The World Health Organisation may be concerned about the side effects of d-drugs and may recommend switching to tenofovir (Viread) but that’s just words. The real decision makers and some may say culprits, are the drug companies and decision-makers in individual countries.

In 2006, Bill Clinton may have said;

“Why is it that Americans who take the retroviral drugs these companies produce survive whereas their counterparts suffering from the same illness in Africa and other developing countries die despite taking the drugs?”                                       

Bill Clinton (2006) @ the 16th International Conference at Toronto, Canada.

but the drug companies cynically continued to dump their reserves of d-drugs onto the African markets at a reduced price because they weren’t being used in the richer countries any more. The African governments took up their offer because of the price and the scale of the problem and maybe, who can blame them. However, this was more than ten years ago and d-drugs, with all their nasty side effects are still the commonest HART drugs in Africa.

It’s so short-sighted. Cliché it may be but the children really are their future but making them a priority seems to be frequently unconsidered. Here the W.H.O. could step in; as could the West and instead of Americans exporting evangelists to encourage hatred against LGBT Africans, the 1^st World has the resources to provide modern HIV drugs at affordable prices. Why don’t they?

It would be easy to throw all the blame on Big Pharma and a disconnected Western politics and media but there are sound arguments for a sea-change in social attitudes within African cultures themselves. When the South African High Court can pass a judgment such as the following: 

“It is no longer a criminal offence for children aged between 12 and 16 to engage in consensual sexual activities, the Pretoria High Court ruled yesterday…

…It asked the court to declare certain provisions unconstitutional as they infringed on a child’s right to dignity and privacy.” (More information here).

You wonder how on earth they are going to control the spread of HIV amongst sexually active teenagers and younger. Women traditionally still play a subservient role in society and sexually even more so. If they are infected with HIV, their unborn children are at much greater risk. Add that to men’s reluctance to use condoms, plus the lack of safe sex education, plus the high incidence of rape, abuse or conflict and the spiral continues.

In the end, the greatest sufferers are the children who are born into HIV, or orphaned by HIV, or become infected by the socially irresponsible. Given that these things won’t change quickly and children are still becoming infected at horrifying rates; the least that can be done for them is the provision of effective palliative care. It doesn’t cost that much to keep a child out of pain but first there must be a will to do it and there, adults across the world must bear some responsibility.

‘A nurse we had been working with for several months said “Doctor, I do not see how this Palliative Care can work – the patients, they just keep dying!”

Caring rather than curing. A revolutionary concept to many places in the world’.

(Quotation source and more info here.

Further information:

Pain Management in Africa

Pain assessment in Sub-Saharan Africa   

A child's body talks of his pain

Until the middle of the 1990s, there were relatively few cases of HIV in Russia. However in 2012, Russia and the other Eurasian countries were experiencing the highest rate of new infections in the world. It’s a potential pandemic that could have devastating consequences if the right sort of action isn’t taken soon.

The World Bank has estimated that by 2020, as many as twenty thousand Russians could die every month as a result of HIV/AIDS and that the total HIV+ population could be five and a half million. Less optimistic predictions point to a possible HIV+ rate of infection as large as fourteen million.

The difference with the rest of the world is that in Russia, the officially greatest source of infection was and probably still is, drug abuse and intravenous injection. The potential for the virus spreading into the general population is probably driving these alarming predictions and although we are used to doomsday predictions like this (which have eventually turned out to be exaggerated), the problem can’t be ignored in the way it has been up until now.

The fact that an estimated eight out of ten people with HIV in Russia became infected through shared needles highlights the source of the problem. But as long as the nation continues to regard drug abuse as a crime and not a sickness, it’s difficult to see how it can be controlled. Drug abusers are, by their nature, a marginalised group in any society but in a land where there is no structured support or help and the nature of their activities leads to an underground culture, they can become invisible HIV-carriers.

When drug addiction leads to prostitution to feed the habit, the virus finds another easy conduit into the population at large. A Russian ex-addict, Kostya Lyubinov, said that in his experience, it was nothing unusual to have ten people in a room sharing one needle and even if they had enough money to buy new needles, laziness and lack of motivation stopped them doing it.

It seems blindingly obvious then that treating drug addiction is an essential prerequisite for preventing the further spread of HIV. But when the authorities throw people into jail with no support and expose them to an in-house criminal environment, the problem is only temporarily kept from the streets.

Lyubinov went on to say that:

“The biggest challenge I see is the huge intolerance, stigma and discrimination against people with HIV. Things are slowly improving, as awareness of the drug problem and HIV is higher than five years ago. But from my experience from the rehab centres, ex-addicts living with HIV face huge stigma and discrimination – from society at large, as well as from much of the public health system. Sometimes it even comes from their own family. In most cases this is simply because of ignorance; so most people living with HIV feel they have no option but to lead a double life, hiding their status.”

There are statistics to back up the prominence of drug-related HIV numbers. In 56.2% of all new infections, injections, using dirty needles are the cause. Men who have sex with men come second at 41.4%. Most HIV cases in Russia are men but 36% are women and that’s surprisingly high compared to western statistics. Deaths from AIDS-related problems are growing by 14% each year and although the Russian health authorities must be well aware of the problem, their track-record in dealing with it leaves much to be desired.

According to the UNAIDS World AIDS Day Report of 2011; 160,000 people became infected in 2010 and 60,000 people died of HIV/AIDS.

Part of the problem stems from the massive influx of heroin from Afghanistan in the 1990s. This may well explain the relatively high incidence of HIV infections in Kazakhstan, Uzbekistan, Azerbaijan and other Islamic former Soviet republics and from these countries, the smuggling routes to Russia, Ukraine, Moldova and other eastern European states are much easier.

So, drug users and drug users who become sex workers are a proportionately high source of HIV infection. If they are caught, they then take the infection into prisons where unofficial accounts claim that HIV is rife and because of the dual sexuality of drug addiction, access to the general population is probably higher than anything we are used to in the West. Similar ratios where heterosexuals infect heterosexuals happen in parts of Africa but more due to prostitution than drug misuse.

So what about gay men and HIV in Eastern Europe and Eurasia? Officially, HIV infections through male to male sex are proportionately low in comparison to the western world. Officially less than 1 percent of newly registered cases in Russia in 2006 came via gay sex but as we know, the statistics have exploded since then. Still, nobody can say with any certainty what the true statistics for MSM, HIV cases are because the climate is so antagonistic for gay men and women. It is believed that HIV is spreading rapidly in the MSM community but very few people dare reveal their contact details. Stigmatisation and worse are significant barriers to honesty in these cases. Nobody wants to go into a Russian jail or hospital, with the tags ‘gay’ and ‘HIV’ around their necks.

Homosexuality is not a criminal offence in Russia but at the same time, the stigma from both public and official sources is enormous and enough of a threat for gay men to deny that their sexuality was the cause of their infection.

"Governments everywhere in the area are reluctant to spend money on sex workers, on drug users, but MSM comes at the top of the reluctance list. It is probably the last programmes that the governments will start." Roman Gailevich, UNAIDS Regional Programme adviser. 

If all the statistics are accurate and the predictions are anywhere near the truth, Russia and other states in the region are facing huge health-management problems in the near future. There may be many Russians and Russian politicians who would cheerfully round up all drug users, gay men and prostitutes and ship them off to Siberia, thus isolating the problem. Of course this isn’t going to happen, even in countries that are officially so conservative and homophobic, so Russia needs to face reality and make a cultural U-turn in order to begin to deal with the problem of HIV.

The availability of needle exchange programs and drug substitution therapies are vital in order to help drug addicts who may be at risk both to themselves and others. This requires an admission that the problem exists and further, a social program that seeks to rehabilitate rather than imprison. More than this, information about safe sex, widespread free condom distribution and information about the dangers of drug addiction need to be put into immediate effect, especially in the school systems where it is illegal to mention homosexuality at all.

At the moment, there are between 70 and 100 needle exchange schemes in the whole of Russia! Without meaning to pun, it’s a needle in a haystack when there are officially 2 million intra-venous drug users. The change needs to come from the top down and the political and social climate needs to change to allow the full extent of the problem of HIV to emerge. If there is a climate of fear and punishment, people are going to hide both their identities and their health problems, leading to a logical rise in new infections. The authorities need to make it safe to admit addiction, or sexuality and more importantly, to submit to testing and admit HIV infection. In order to do this they need to allow private support systems to grow, meaning gay and HIV organisations and groups who give support to drug users.

Passing laws that make distribution of information about LGBT issues illegal clearly works against any efforts to bring HIV infection under control. Vladimir Putin did promise to put much more effort into the fight against HIV but really needs to translate words into concrete action. Treating drug addicts and men who have sex with men as the scum of the earth, is not a constructive way to move forward. We have to hope that in the near future, the government will invest heavily in ‘harm reduction’ programs and seek to turn HIV positive people into positive contributors to Russian society but for that to happen, they need to suspend outdated moral politics and look realistically at the situation on the ground.

Finally, the video below may be 25 minutes long and you may raise an eyebrow at its source but it’s an excellent appraisal of the HIV problem in Russia and the 16 other countries that made up the former soviet union – worth a look if you have the time.

http://aje.me/Wa3A55