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We’ve got several HIV epidemics going on, and one group is being brushed under the carpet – we’re the inconvenient past: the people damaged by early HIV drugs

I had a new meeting with the “worker for people with long term conditions” today. Let’s just say it left me with a bad taste in my mouth…

I ended up with a badly designed THT Cymru leaflet (someone needs lessons on aspect ratio for graphics as well as placing of text within text boxes, not to mention colour balance – and I’m just an amateur) with the worker’s email and phone number scribbled on it. Very professional. A good proportion of the leaflet talked about how Community Service Volunteers helped and were welcomed. The office I was at had already said that they didn’t have a tradition of using volunteers. What was I there for?

A lecture, an expansion of the relevant bits of the leaflet as they may be relevant to me, which is not much. Basically of all the services offered in the leaflet the only one that might be relevant was transport to the HIV clinic, which frankly is a bit of a kick in the gut. I was a biker: I could go anywhere: part of my therapy for that is learning to “cripplethink” – it’s unlikely my ankle will ever heal so I’ve got to get used to the pain and tiredness of getting somewhere in two hours instead of twenty minutes. Mabon (my bike) and I had a lot of fun, so much so that a character in my mucky (let’s be honest: totally pornographic – so much so that I doubt I’ll find a British publisher) novel is named after him.

I asked a number of what I thought were pertinent questions, like the re-boot of the support groups here: yes, but only initially inviting those registered with the one clinic. I know full well that people from this area go as far as England for treatment: I’ve even considered going back to Southmead in Bristol myself. A friend of a friend who lives further west that man goes to Hereford. The problem with Wales is that the few general hospitals we have are around the borders, and it’s only them who offer HIV services. A friend had a dose of genital thrush which his GP didn’t feel able to diagnose (hell I know when I’m thrushed up with just a look) and so waited in itchy, painful stress before the GU clinic were able to tell him (three weeks later) what I could have told him over the phone and confirmed in person. (As a person with diabetes I consider myself pretty expert in in genital thrush – don’t worry: I don’t do it when I’ve got it. It’s too painful!)

I hear some experienced and/or astute readers asking themselves “This theme again?” The truth is that we’ve got several HIV epidemics going on..

The Young
First are the newsworthy twenty somethings who are madly chasing the bug, intentionally or not. On the sites I frequent they’re more concerned about how to have natural sex while avoiding the HIV. My advice remains the same: make sure you can trust him (insofar as you can trust any man… me bitter? Never!) Guys who have regular check-ups are far less to be unwittingly HIV+ and far less likely to have other STIs. Gold star, lads!  The guys who leave it a long time between check-ups are statistically far more likely to have picked something up between check-ups.  Syphilis, gonorrhoea etc are bloody painful as well as reducing immunity (as a gay man who knows his classics, Syphilis is such a wonderful name) and the longer you leave it between check-ups, the more likely you are to pick up an STI, one of which may be HIV. Test frequently!

The Ageing
Next up are the people who caught onto the last wave of antivirals and made full, or nearly full recoveries. We still had scary moments and people still died (we didn’t know about abacavir and HLA-B*5701, for example). We’d pretty much worked out drug regimes involving opportunistic infection, it didn’t stop our wonderful Dr Sarah walking into John’s room one day, after a particularly rough week to ask “how do you feel now we’re not poisoning you?” Sarah was a love – wherever she is, if you know her, tell her Steve with the rottweilers sends his love and thanks.

We are the wrinklies – I count myself as one, before you object. I earned my grey hair hair and wrinkles and am proud of them – they tell the story f my life with my little passenger just as surely as my tattoos do. For some of us HIV has been a recent infection, for others, like me, it’s been there for more years than I care to remember. Either way, while we have a pretty good idea what HIV does in young bodies, we just don’t know what it does to our ageing bodies. All those years ago we never thought there’d be a need for ‘HIV geriatrics’ as a speciality and all of a sudden the kids have got these oldies messing up their “of course you can be totally healthy with HIV” messages. We’re getting the standard diseases of old age along with effects from the early drugs.

I’m going to name drop (and I remember when she was a shop girl in Athena, even if she is now one of the most powerful women working in HIV – mae’n ddrwg gen i, cariad!): returning from National Long Term Survivors weekend I was warming myself in the underpass between the platforms of Cardiff station. Suddenly a big figure like the beginning of Killing of Sister George (my sight is hopeless) was bearing down on me. We hadn’t seen each other for twenty or more years and babbled like it was only yesterday. She’s been having trouble with her knee and suspected arthritis, while I talked about my diabetes “Ah the diseases of old age…” she said

“No” I said. “High dose ritonavir, ddI and d4t”

She looked me in the eye and said “yep, that’ll do it.” Honest to a fault our Lisa. I really sincerely wish she wasn’t leaving THT, but I recognise the need to move on.

The Survivors
But there’s your third epidemic: those of us who got a bit messed up by the drugs. I’m not seeking sympathy: yes we were doing it for those who didn’t need the drugs yet, but we were also doing it to stay alive. Double blind trials meant you had a 50/50 chance of getting the real thing as well as increased monitoring.

I’ll admit my vulnerabilities: most obviously I need a walking stick to get about unfamiliar places. My body’s a lot older than my head, thanks to the chemical castration of early ritonavir.

After bereavement I live in an area where neither of us had lived, but was ill on arrival I’m not a gay scene fan (can’t stand all that loud music, and besides you should see the taxi fare from Swansea if you don’t score!), and so am, apart from all too brief bursts of activity, almost totally isolated. I can’t even walk as far as the nearest (straight) pub: I have no problem phoning for a taxi, but doesn’t a taxi to the pub look a little tacky? And besides, I’d far rather walk into a bar with a man than by myself.

Virtual life (which is what I live, spending on average 23 hours and 59 minutes alone each day) isn’t all it’s cracked up to be. I’d love to talk more, but it’s getting late, 2am infact (I wish I had someone to nag me to bed) and I may miss a delivery slot for my groceries…

Steve (@rottiesteve on twitter)

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3 COMMENTS

  1. Thanks to Steve for this article. It ought to be compulsory reading for anyone thinking of or already engaged in HIV work. Well done ‘Beyond Positive’ for making it available.

  2. Diagnosed with HTLV3 in 1983 while on a trial for what would become the HIV test. I was not expecting to find myself alive now. The initial drugs that went on trial were harsh and we pooped and vomited all day and night for years. My teeth were black and my bum was like a dragons nostril for years while while I took pills in handfuls of 8 at a timer. The nerves in my legs were destroyed and my organs rearranged themselves to make room for a giant pancreas. The biggest shock came recently when the pip assessor lied about what she saw and heard at my interview resulting in the loss of my DLA, my car and putting me into instant poverty. I have no way to buy food or get to a food bank. I won’t be able to get to my appeal tribunal or have any representation and I had to stop taking my meds in order to acheive the tasks forced upon me by the joncentre who just ignore letters explaining what their arbitrary decisions are doing to me. In 1997 my dental clinic gave me veneers to prevent me feeling stigmatised. Last year the same clinic removed them and I assumed they would be replaced , but they left me with teeth looking like a row of broken beer bottles which shocked the first people I saw, so I haven’t seen anybody since. I’m now cold and hungry all the time and to be honest I think I’m entering the last phase of my life.
    What’s bugging me is that after surviving HIV, full blow. AIDS, the Concorde trials, nebulised pentamidine and DDI in tablets that were like bars of soap, I’m going to die because of a random decision made by a person with no idea at all of the medical and mental challenges I face and thinks she knows all she needs to because she’s got a little book of diseases to refer to when deciding that all I have to do is take a pill or two a day and can see no reason for needing any help. My consultants letter was very clear in its outline of my various conditions but it was not even glanced at.
    So surprisingly my HIV has done me less harm in a lifetime than a couple of Inhumans at the Jobcentre have managed to do in a couple of years. Hope I don’t catch it again

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