Treating and preventing HIV in the post-HAART situation: perspectives from qualitative research

Mark DavisSchool of Social Sciences, Media and Cultural StudiesUniversity of East LondonPaper presented at the British Sociological Association Annual Conference, University of East London12 April, 2007

Overview

C8 programme suggestion: the ‘future expectations’ of gay men with HIV

Using qualitative interviews with gay men with HIV to explore personal aspects of living with HAART and preventing HIV

Background

‘Changed expectations’ is a dominant way of thinking about the post-HAART situation, eg: Medical watershed (protease moment, post-

AIDS, post-HAART . . .) Orienting to change in psychosocial care

(coping with uncertainty) Lack of use of condoms explained in terms of

changed expectations (treatment optimism or reducing fear of HIV)

HIV prevention responsibilities have become a focus in the post-HAART situation (criminalisation, ‘barebacking’)

Critique

Are our perspectives on change grounded in the lived experience of gay men with HIV? Need to situate interventions in the

language, meanings and practices of gay men with HIV

Question dominant assumptions about the post-HAART epidemic

Methodology

Qualitative interviews with gay men ‘Transitions in HIV treatment study’ in

Glasgow and London (n=21) Sexual Health and Anti-retroviral

Project in London (n=25) 12 month follow-up with the SHARP

group (n=11)

Themes

Accounting for future expectations with HAART

Public complacency/personal insecurity

Accounting for risk in the post-HAART situation

Living with HAART

Transition and uncertainty

Planning and expectations

Prognostic paradox

Transition

I'm very aware that it's new territory. I've been lucky I think because if I'd got sick even three years before I did, I would be dead. When I was in hospital one of the… well the main doctor, told my partner I had two years to live maximum. And then he said “Oh actually, make that one”, because they really did not know how to deal with toxo [toxoplasmosis] (Transitions, G02)

Uncertainty

I think there is an issue in regards to the long-term effects. But I think because, you know, we just don’t know anything about it, you’ve just got to travel hopefully and be quite . . . Hopeful towards the future you know. But the long-term side effects as regards maybe the heart and the lypo stuff and all the rest of it is something that … could be right there round the corner you know (Transitions: G09)

Planning

I've got no plans to make any plans. I'm virtually living from year to year, month to month. I don’t plan any further than a month down the track. I don’t see any point to it at the moment. Because if I have to think about it then I don’t see any light at the end of the tunnel just yet … … Certainly don’t want to start building up my hopes and find out, six months down the track: ‘Oh sorry to tell you, but those tablets have stopped working on you now’ (Follow-up: George)

Prognostic strategy 1

I said to my counsellor in this room: ‘Well how long have I got?’ She said: ‘Oh you mustn’t look at it like that love, it’s more like diabetes these days’ . . . ‘You know, it’s a sort of chronic illness rather than a terminal one, and people are living for years with high quality lives on combination therapy already’ . . . what she was trying to do was put me in the most positive frame of mind (Follow-up: Kevin)

Prognostic strategy 2

My doctor is much more sort of tight-lipped and less upbeat about saying things . . . she looked at my results first of all and I had a CD4 count of 20 and a viral load of 164k, I’d just had pneumonia and about six other things on the sheet, and here I was developing KS. So my doctor wasn’t going to say, because she’s not the disposition of that kind of person: ‘Oh it’ll all be fine darling’. She wasn’t going to say that. In fact she told me I had a 60% chance of dying within the next 36 months (Follow-up: Kevin)

. . . not a bad innings

… I feel very well, you know, that’s sort of the main thing isn’t it. You know, and I think I’m 40 and, you know, if each drug I’m on lasts for 2 years then, you know, I might be around 60 … … I think for a gay man 60’s probably enough … … 60’s not a bad innings … … none of us know until we’ve been there … (Follow-up: Robert).

Public complacency/private insecurity

The complacent ‘other’ Changed meaning of AIDS Personalising HIV Individualising HIV prevention

The complacent ‘other’

… a lot of gay people have forgotten about the HIV issue (SHARP: Edgar)… at first there’s all this sort of big fuss and whatnot, but when all that dies down, everyone just gets on with their lives (SHARP: Rodney)… I think combination therapy, to some people, has been seen as a panacea (SHARP: William)… people think rightly or wrongly that it’s no longer a death threat (SHARP: Tony)

Changed meaning of AIDS

. . . my doctor . . . once said: ‘You're in very good condition for somebody who has had AIDS’. There's a sense in which AIDS really described having reached a more or less irreversible stage of decline in your health. Whereas, that kind of description of what happens in the illness now doesn't seem to be very appropriate because that's not what's happening to an awful lot of people. Once you stick combination therapy into the equation people's viral loads come down and the CD4 count goes back up and therefore the word AIDS has come off and there's much more use of the term HIV. And it just seems to be a less frightening thing in people's minds (SHARP: Kevin)

Personalising HIV

It’s my job to look after myself and the doctor’s job to help me do that. It’s not the doctor’s job to look after me. If something goes wrong with my treatment, it may not be my fault, but it’s certainly my responsibility to deal with it (SHARP: Stephen)

Individualising HIV prevention

. . . depends what your attitude is to HIV. I mean, depends whether you regard it as life threatening or if it's just another of the many diseases around which, you know, there are a number of drugs which sort of deal with it even if they don't cure it. Depends what your attitude is … … ultimately whether you think there's going to be a cure around the corner. I suspect in everyone's mind there is this idea that there's a cure around the corner and that you can basically screw around and not really worry about it … (SHARP: Tony)

Viral and social risks in sex

Post-HAART language of risk identity

Assessing the effects of HAART on infectiousness

. . . shagged by another virus

. . . we discussed this the first time I saw you, that whole bareback riding thing . . . it’s such a big chance to take that you could be well like . . . shagged by another virus and then become really quite ill, you know, coz that virus could be completely different to the one you’ve got (Follow-up: Edgar)

Viral load

I think by having my viral load as low as it is I am not as infectious, but I’m still infectious. So it’s just, it is, you know, yes, I’m putting somebody at less risk … (SHARP: Vincent)

I always assume, I behave as though, it doesn’t reduce the chances (Follow-up: Thomas)

Contested knowledge

I'm a bit confused about that and the reason that I'm confused at the moment is because of a remark made to me by [my doctor] some weeks back . . . he said that I had more chance of passing on hepatitis B than I did of passing on HIV given the low detectable, the undetectable level of my viral load . . . I walk about with those words reverberating in my head, not knowing whether I can believe them or not (SHARP: Alastair)

Summary

The post-HAART situation is more complex than implied by ideas like ‘treatment optimism’

Future expectations cautious or hedged Present awareness of uncertainties,

paradox in prognostic strategies Shift in meanings of AIDS and HIV Personalising of HIV & individualising of HIV

prevention Post-HAART risk language used to objectify

self and talk about HIV prevention Contest over risk implications of treatment

Implications

Need expanded options in the domains of self care and HIV prevention that engage with transition, uncertainty and contest, eg: Establishing personal security throughout

treatment transitions Overcoming the isolating aspects of living with

HAART Deciding and communicating about effective

methods of HIV prevention in light of treatment effects

Acknowledgements

Paul Flowers, Glasgow Caledonian UniversityJamie Frankis, Glasgow Caledonian University

Graham Hart, MRC

John Imrie, UCLMarsha Rosengarten, UCL

Judith Stephenson, UCLIan Williams, UCL

Oliver Davidson, UCL