Interview 19

Age at interview: 48

Age at diagnosis: 29

Brief Outline:

Although medically retired, he is very active and works voluntarily. He is currently on lopinavir, 3TC, abacavir, ddI and tenofovir, with 1700 viral copies. Side-effects have included lipodystrophy.

Background:

A 48 year old gay man who lives in a small village in the UK. He was diagnosed in 1986.

More about me...

Age at interview' 48

Age at diagnosis' 29

Sex' Male

Background' A 48 year old gay man who lives in a small village in the UK. He was diagnosed in 1986.

Outline' A 48 year old gay man who lives in a small village in the UK. He was diagnosed in 1986. Traumatically, he was 'outed' with HIV in the 1980s in a newspaper story, and is concerned that confidentiality should always respected. Although medically retired, he is very active and works voluntarily a number of days a week. He was involved in initial trials of HIV anti-virals, and so has developed some resistance to current day medication. He is currently on lopinavir, 3TC, abacavir, ddI and tenofovir, with 1700 viral copies. Side-effects have included lipodystrophy (treated with New Fill), loss of his gluteus maximus and 'buffalo hump' (treated with testosterone). He feels he is still recovering from the break-up of his last relationship. He has benefited from counselling and anti-depressant medication in the past. He believes that with creativity, safe sex can be sustained by gay men.
 

In facing death and grief he developed deeper connections with people.

And then they got to the stage where they're no longer there' they just died, you know. You'd go to their funeral, you had' you would have very deep conversations, you'd hardly know' I mean I only knew [name] for about nine months, by the time I'd' Towards the end visiting him in hospital and things, it looked like I've known him all my life. There was that friendship that was, that was there that we'd been through so much together, even though it was only nine months and he was longer there. And then there was somebody else in the group that came along that was, that was positive. And you'd build that relationship up again with somebody else and, for the grace of God, I could go there, you know, I could be the next one.

Believes that other sexually transmitted infections can make HIV infection more likely.

And historically looking at the figures, you can say, if oral sex was a risk then we'd see a hell of a lot more gay men infected with HIV than the present just short of 2,000 every year. What we're actually seeing in the clinics is multi-infections where oral sex has been the route of transmission. So if they've been infected, shall I say if the guy had' the positive guy had syphilis right, and you performed oral sex on him, not only would you get syphilis but you would also get HIV. Sort of piggy backing on the back of the initial infection, although probably that's not technically correct but, that's the way it works. So whether we're talking about Chlamydia, again you see a hell of a lot of Chlamydia, something like 100,000 new cases every year right, in the United Kingdom. So if you pick up Chlamydia and you're HIV positive, there's a good chance you'll pick up both infections through oral sex. Whereas if they were solely HIV positive, then you'll probably need, more difficult to acquire HIV as a mono-infection.

Proved to himself that HIV discrimination can still exist in the gay community.

I did a little experiment, I went into, to one of the [gay] clubs and I'm going back about 2 years, after [my partner]'s death. Went into a club and got chatting to people and I would purposely tell them' I did it four times in one particular evening and told them I was HIV positive. And every time they talked to me very nicely, made an excuse and it ended. Which told me a hell of a lot' right. That just because I was being upfront and honest about my HIV, I was being discriminated against. They didn't want anything to do with me, and that's from my own sub group, in the sense, being the gay community. We're supposed to be probably more educated around HIV than the general population, because of what we went through in the 80s'

Telling people about your HIV status is not easy, it is very, very difficult. Your biggest fear is that you want to be accepted but your biggest' you're going to be rejected and it hurts.

He was under enormous stress when his HIV diagnosis became public in his village.

That was one of the most difficult days in my life, in sitting down and explaining to my brother and my parents' because one of the reasons I didn't want to tell my parents was that A. there was nothing they could do for me and B. they would only worry about me, that I was going to die and a parent doesn't want, actually want to hear that, that one of their children is seriously ill. So, after I did that, a week later the nurse came to take my stitches out. And she brought a letter from the managing director that said basically, 'Sorry yeah to hear about your accident but you've caused a little bit of disquiet within the company and before we consider whether we can let you back to work we want you to go and see the doc, the doctor.' I thought shit, they're going to get rid of me, I'm going to lose my job. How am I going to pay the mortgage, just bought this house, so how am I going to pay the mortgage? Who's going to employ me? You know things had taken a nosedive and that was probably the same time I thought about suicide as an option. You know that I couldn't see a way out of it you know. 

Talks about the risk of getting HIV in unsafe sex.

And it's a, well the thing is that HIV is not a contact infection, so you can't say' If I have unprotected sex with somebody with HIV therefore I must then be HIV positive, I must pick the infection up. That is not true, right. There has to be, several factors must come into play. How much viral load is in the genital tract, what sort of sex you have, whether there's any trauma there, how often you do it, those sorts of things come, come into play. You know I know of couples where one has been admitted to hospital with very little immunity and an opportunistic infection, tested the partner, partner's negative, right. That's not unheard of you know. So HIV is not an automatic infection.

Discrimination against HIV positive people can, and should, be challenged.

I had an endoscopy, was another procedure I had a couple of years ago, and I was the second in line, 10 o'clock was my, was my slot. They got me on the table, anaesthetised me and you could see the doc looking at my notes. You know calling the sister over with his eyes, saying you know are you aware he's positive? And he said to me, 'Mr [name] are you HIV positive?' And I said, 'Very much so. Must have been about what ten, twelve years I've been positive.' And he said, 'We can't treat you', and I said, 'Why not?' 'Well you have to go at the end of the list', and I said, 'Why?' and he couldn't give me an answer. But he uses the stock phrase that all professionals in the medical field use, guidelines. 'Sorry the guidelines.' To which my reply would be, 'What guidelines? Whose guidelines? When were they written? When were they last updated? Where's a copy of them?' to which he couldn't answer. So I went back at the end and the hospital wrote me a nice letter saying that, how sorry they were that because I was immune compromised, they wanted to make sure the machine was suitably clean so I didn't pick up an infection. To which I wrote back and said are you telling me you're putting patients at risk because you don't clean the equipment properly?