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Sociology of Health & Illness Vol. 26 No. 5 2004 ISSN 0141–9889, pp. 575–596 Marsha Original HIV medical Rosengarten, Articles technologies John from Imrie, thePaul perspective Flowers, al. prescribers Blackwell Oxford, Sociology SHIL © 0141-9889 July 0 1 5 26 00 Blackwell 2004 UK Publishing ofPublishing Health &Ltd Illness Ltd/Editorial Board 2004ofettheir

After the euphoria: HIV medical technologies from the perspective of their prescribers Marsha Rosengarten1, John Imrie1, Paul Flowers2, Mark D. Davis3 and Graham J. Hart4 1

Department of Sexually Transmitted Diseases, University College, London Psychology Department, Glasgow Caledonian University 3 St Bartholomew School of Nursing and Midwifery, City University, London 4 MRC Social and Public Health Science Unit, Glasgow University

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Abstract

This paper focuses on the relationship of HIV medical technologies to current styles of medical practice and highlights issues posed by the technologies for those working and/or living with HIV. The paper examines HIV anti-retroviral combination therapies and associated tests from the perspective of their prescribers. The prescribers were interviewed during the later part of 2002 at three London HIV clinics. Their comments, considered in light of other recent studies in the field, suggest that current therapies are part of a transitional phase in the epidemic which informs the identification and negotiation of known risks and uncertainty. An undetermined but extended life expectancy, afforded by anti-retroviral therapies, is understood against risk of iatrogenic diseases and/or viral drug resistance. The tension arising in this situation of unwanted and even uncertain phenomena poses ethical dilemmas and affects doctor/patient relations. Indeed, it also contributes to a reconfiguring of the lived experience of managing HIV. While the new technologies have offered considerable advances in the medical management of HIV, they are altering the nature of HIV medicine both materially and socially. The scenario is further complicated by the uneven allocation of resources and different patient health and disease states. The heterogeneity of resources, disease states and technological effects points to the need for ongoing and extended evaluation as the relationship between these and the everyday practice of medicine continues to change.

Keywords: HIV antiretroviral combination therapy, medical technologies, doctors/patient relations © Blackwell Publishing Ltd/Editorial Board 2004. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden MA 02148, USA

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Marsha Rosengarten, John Imrie, Paul Flowers et al.

Introduction I first became aware of combination therapy, as a treatment strategy following Vancouver . . . there was a kind of wave of euphoria there. And it really was euphoria actually. I think I came out of that with a feeling that the tide had changed . . . ’cos I think Concord [a trial of AZT as a monotherapy] had really deflated lots of people’s hopes of, you know, ‘therapies were going to work . . .’ People were quite excited about it [HIV anti-retroviral combination therapy] and kind of, you know, almost forgot that actually these were very potent drugs which would have side effects (HC8). This paper revisits a site of intense medical transformation involving pharmaceutical and diagnostic innovations that, by effectively suppressing HIV replication, can prevent AIDS. The Vancouver AIDS Conference, in 1996, was the first official public announcement that HIV anti-retroviral drugs, when used in combination, can effectively intercept HIV replication and, by doing so, prevent or reverse the onset of AIDS for an indefinite period. Prior to this time, some clinicians may have been anecdotely aware of the likely benefit of using drugs in combination but, as with medicine more generally, large-scale instituting and acceptance of a prescription-based pharmaceutical therapy relies on clinical-trial outcomes. Peer-refereed trial outcomes provide a sense, if not a guarantee, of certainty for doctors and possibly patients alike. Alongside this certainty, however, may be the knowledge that an intervention will produce ‘other’ unintended effects. Seven years since the widespread introduction of antiretroviral therapy (ART), in countries with the resources and/or will to implement them, there are now significant trial data as well as anecdotal material to raise consternation about unanticipated and unwanted ART effects. Here, we focus on how HIV clinicians see current issues posed by ART and also how they understand their own practice, including their relations with patients, in this context. Our aim is to provide some insight into a field characterised as posing new challenges and dilemmas for those working and / or living with HIV. By doing so, we also want to forge an engagement with other areas of medical innovation. While HIV medical interventions are specific in numerous ways, they can also be viewed through a broader lens of medical change. This change is shaped by knowledge derived through the development and implementation of molecular biology and, more recently, genomics. Since its introduction in the early 1980s, the HIV antibody test has provoked many of the questions and activities now emerging within the field of genomics in terms of risk, changed personhood and patient activism (Flowers 2001, Kippax and Race 2003). The more recent introduction of ART has recast the field from one of primarily predictive technology (HIV antibody test) and palliative care to pharmaceutical intervention with profound medical, bioethical, ethical and social consequences. Indeed, in various ways, © Blackwell Publishing Ltd/Editorial Board 2004

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ART shares in the pervasive and disturbing uncertainty observed in other areas of medical innovation (Webster 2002). Many people in the HIV field express concern about its unknown long-term efficacy (see, for example, Yallop et al. 2002: 432). Within clinical practice, the degree of uncertainty inherent in the day-to-day management of HIV is so familiar that it might well be regarded as commonplace. As Moatti and Souteyrand (2000: 1523) note, standard tests on which prescribing decisions are based do not provide absolute threshold measures. They go on to state: ‘Criteria for identification of treatment failure and clinical decisions to switch . . . [treatment] regimen also remain a matter of debate’. These ‘grey areas’, amongst others, constitute HIV medicine as an emerging terrain structured not only by uncertainty but also ambiguity. It is not easy to comprehend and medically evaluate unanticipated or, as yet, indeterminate bodily changes. Nevertheless, it is critical to begin to consider how lack of certainty and ambiguity, in how to classify or locate phenomena as medical or non-medical, affects medical practice. Like other molecular-based technologies that claim to reveal new truths about our bodies and, thereby, introduce new obligations to ourselves and others (Novas and Rose 2000), ART has already been shown to reconfigure relations to self and others in the realms of health and also infectivity. For Race (2001: 177), the specific technology of viral load measuring1, working in tandem with the delivery of the drugs, institutes a highly individualised experience of HIV infection in which the person becomes responsible for keeping their own viral levels down. This new style of personhood is achieved through medical monitoring that links viral progression with patient dosing adherence. For Rosengarten et al. (2000), ART challenges fixed meanings of infectivity and thereby provides a condition of possibility for new styles of risk reduction within gay sexual cultures. However, although there are many points of overlap and exchange between HIV medicine and other areas of medical innovation, there are specificities to HIV and ART that locate the HIV medical field somewhat differently, for instance, its continued status as a sexually communicable infectious disease despite its arguable transformation to a chronic illness marks HIV as distinctive. It is surprising that the significance of HIV to the broader world of new technologies remains largely uninvestigated. The field of HIV, having once been a forerunner in cultural analyses of science (see, for example, Haraway 1989, Treichler 1988, Martin 1990), now tends to shy away from a social study of its technologies. Although it is beyond the scope of this paper to examine how or why this has come about, we propose to put forward a series of partial explanations as they relate to the substance of our research documented here. As will become apparent in this paper, ART is invariably framed by what came before it. It is also framed by an absence: the vast global majority of HIV-infected people, mainly in resource poor countries, who continue to be denied it. Both ways of contextualising ART may limit ‘the will’ necessary for critique. Also relevant to why there is little impetus to undertake social analyses of ART may be the way that some of the struggle against HIV, within © Blackwell Publishing Ltd/Editorial Board 2004

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countries such as the UK, has metamorphosed into treatment information. Organisational energy at the national level is very much directed toward making the scientific knowledge of ART accessible to the lay person for the purposes of patient involvement (Rosengarten 2004). But, most of all, HIV social research tends to be harnessed to a preventative approach which, to date, has largely failed to recognise the overlap between the therapeutic and the preventative (Kippax and Race 2003). Although there are numerous studies for the purpose of achieving patient compliance with HIV drug regimens (see, for example, Chesney et al. 2000, Wagner 2003), critiques of the disciplinary consequences of this insistence on people living with HIV/AIDS (PLWHAs) are rare. Studies of how these disciplinary strictures are conceived and dealt with by prescribers appear to have been overlooked altogether. Certainly there is little research on the pharmaceutical industry that produces the requirement for adherence through the design of anti-retroviral drugs (see, for example, Flowers 2001, Rosengarten 2004). A recent issue of the British Medical Journal made evident the need to examine the way in which pharmaceutical profits are used to enlist medical practitioners in prescribing on the basis of brand (BMJ 2003). Key to this is the role that medical practitioners as well as social researchers, like ourselves, play in influencing the research and development process of new technologies (Callon et al. 2002; Rosengarten 2004). Here, we focus on the perceptions of practitioners working with ART. Specifically, we address the questions: how do clinicians perceive the risks and benefits brought about by ART? How do they understand their role as a medical practitioner in this context? What do they foresee as the biomedical and social consequences of the introduction of these treatment regimens?

Method The interview material comprising the main body of this paper is drawn from in-depth interviews conducted with eight London based HIV clinicians, cited according to numbering HC1 to HC8. Five of the interviewees were recruited through an e-mail circular followed by self-selection at one major central London clinic. Three others, working in clinics in west, central and east London respectively, were invited to participate in order to ensure sample experience with a diverse patient population. All eight began working in HIV before the introduction of ART. The interviews were conducted during September to December 2002 by MR. They were open-ended in approach and guided by a semi-structured schedule. Key areas covered were a comparison with HIV practice pre ART, the role of diagnostic tests, prescribing practices, ART side effects, dealing with death in the context of ART, and the role of patients in decision making. Each interview was tape recorded with the interviewees’ consent and analysed for thematic consistency (Strauss and Corbin 1998). These themes were then contrasted with existing relevant © Blackwell Publishing Ltd/Editorial Board 2004


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material provided by other studies (Gerbert et al. 2000, Race et al. 2001, Yallop et al. 2002).

Results An uncertain future after so much dying . . . It’s because they [anti-retrovirals] have had such an impact that we’re worrying about lipodystrophy [disfiguring disease resulting in fat redistribution to stomach and back of neck, plus wasting of musculature]. But the iatrogenic things will become the main thing won’t they? More and more people on therapy means more and more iatrogenic problems . . . The incubation period for a drug effect is a very long period, so it’s an accumulative thing, happens and then suddenly so many hundreds of thousands of people have been taking it and we’ve got this problem. Don’t know. But faced with people just dying, what do you do? (HC5). Implicit in the tone of the above statement is the tension between providing drugs that have transformed an HIV diagnosis from a terminal disease to a chronic illness (Palella et al. 1998) and the potential of these same drugs to produce serious damage (BHIVA 2001). It is within the space of this tension that many HIV medical practitioners see themselves. It is a tension that provokes new challenges and responsibilities. For HC7, these are identified in ways that raise ethical concerns about the role of the doctor as no longer ‘healer’ or ‘carer’ but ‘risk taker’: ‘now we are in that position of whatever decision I make now is going to impact on this person’s virus for the rest of their lives’ (HC7). Similarly, for HC4, the prescribing of ART may have long-term, irrevocable consequences: ‘the worry is not that penetration will be very precise but possibly irreversible changes will occur . . . particularly to the [immune] system’ (HC4). This mix of uncertainty and risk, now anticipated by HC5, HC4 and HC7, reflects prevailing views of developments in medical technologies (Webster 2002: 443). Across the field of HIV medicine, and that of new technological medical developments more generally, it is evident that the conception that medicine functions to heal or correct, perhaps even prevent, is now under challenge. Increasingly publics are being made aware of unintended and damaging effects brought about by medical interventions. For HIV doctors the tension between preventing viral replication and doing damage, by the same means, is almost palpable. In the study by Gerbert et al. (2000: 416) a focus-group participant stated s/he was ‘besieged by the capacity to do harm’ in relation to prescribing drugs that may cause toxic effects and/or lead to drug resistance. This statement, consistent with those above, underscores a possible growing tide of anxiety amongst practitioners as their patients increasingly present with iatrogenic disease and/or drug © Blackwell Publishing Ltd/Editorial Board 2004

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induced viral resistance. These unwanted phenomena may cause significant problems in the present as well as possibly limiting future treatment options. It seems that one of the ways in which HIV doctors make sense of the very worrisome risks associated with ART is to refer back to what it was like pre-combination therapy. This constitutes a particular historical lens that serves to contextualise current difficulties, limitations and risks posed by ART. Here we wish to highlight this attempt to deal with uncertainty as a way of also showing how medical practice has changed and is continuing to change in relation to current HIV technologies. For some of our interviewees, clinical practice has shifted away from a more ‘hands-on-holistic’ approach to a more limited engagement with the patient’s day-to-day concerns and is dominated by diagnostic test results: I guess it was quite an unreal time really looking back on it . . . the patients weren’t patients, they were your friend(s) and that kind of blurred boundary . . . you know you’d meet someone when they came in with PCP [AIDS related pneumonia] . . . that you would start to look after and then they’d ricochet backwards and forwards in and out of hospital for the next sort of 18 months and then die horribly. You got to know people really, really well and . . . So that becomes really hard . . . I think it was really important for the patient because they were just going through hell but it was incredibly stressful. I can remember occasionally leaving the ward round, just going off to cry in the toilet and then coming back to the ward round and pretending that nothing had happened . . . (HC2). HC6 discusses the intensive nature of HIV medical care pre-ART, but uses it to contextualise a very different style of practice that might be characterised as ‘managing the delivery of therapy’ rather than ‘managing the disease’. Pre-1996 my clinics were full of people who I would see every month or every few weeks and manage their symptoms . . . , progressive immuno-deficiency, gradually more disabled . . . , then come into hospital and die. That was the sort of pattern of management. That’s now changed completely. I now maybe only have a few people who have severe immuno-deficiency where we’re having problems in treating their HIV infection because of multi-drug resistance. My clinics are now largely to do with therapy, managing the response to therapy, managing the side effects of therapy, monitoring HIV infection in those people not on therapy and it’s become very much a chronic disease management, definitely (HC6). The above accounts are characteristic of the way in which HIV medicine before and after ART is most usually narrated (Yallop et al. 2002, Gerbert et al. 2000). A typical statement within the ART-dominated medical field is: ‘We have all seen people get up and walk out of here that once you would have never predicted’ (Yallop et al. 2002: 433). However, while the shift from © Blackwell Publishing Ltd/Editorial Board 2004


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dealing with the terminally ill to ‘managing the delivery of HIV’ has removed the rather more publicly acknowledged distress of dealing with dying, it may well belie the fraught nature of what has taken its place. Chronic disease management fits within the conception of medical practice as providing care, if not cure. But, in HIV, this care may incur other worrying effects notwithstanding those associated with drug failure and the emergence of resistant virus. One of the most noted worrisome side effects, seemingly specific to HIV drug interventions, is comprised in the phenomena of lipodystrophy and lipoatrophy. Lipodystrophy is most usually explained as involving fatty increases on the torso including the stomach, breasts and upper back. Lipoatrophy may manifest itself as facial, upper arm, buttock, and lower leg wasting2. The causes for both are unclear. In the absence of a scientific explanation and, to date, with no evidence of how either affect life expectancy, their status within a medical diagnosis is rather ambiguous. Within everyday practice, however, there is no place for such ambiguity. Obvious physical changes must be located, that is, they must be invested with some sort of meaning. For some medical practitioners (and possibly patients also) this meaning is obtained through a comparative framework. For instance, lipodystrophy is regarded as of relatively minor significance when compared to the previously unpreventable legacy of AIDS. If you talked to people, particularly people who have been ill with AIDS, they will say ‘oh right, you know, I may have lipodystrophy . . .’, particularly older gay men where . . . where maybe you know, they’ve had people who have died of AIDS and they’ve lived with the symptoms and the lipodystrophy is a small price to pay, right? So there are different perspectives (HC6). The ambiguous status of lipodystrophy may also be translated into a ‘cosmetic’ problem and, as such, of minor consequence within a schema of possible terminal disease: There are always a few patients that die from the more serious side effects but those are quite rare and the toxicity is much more, you know, it is the things that patients don’t like such as lipodystrophy. It’s not dangerous but it’s got an image sufficiently to make life pretty miserable for a lot of patients (HC4). These ways of locating lipodystrophy and lipoatrophy as ‘patient’ concerns, rather than as medical concerns, highlights the problematic way in which medicine grapples with questions of embodiment. For those aware of the importance of body image in everyday lived experience (see, for example, Bordo 1988), lipodystrophy and lipoatrophy may be regarded very differently. Below, HC7 provides a type of counter to a more traditional medical approach to phenomena. © Blackwell Publishing Ltd/Editorial Board 2004

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I think it is a hugely difficult problem. Because it carries with it so much ‘stuff’ about the meaning of the body, the meaning of how you look, your body actually being the thing on which your disease is inscribed . . . But the other thing that I think is really important is that it is a very difficult thing to complain about. . . . You’re allowed to complain about a headache and you’re allowed to complain about a list of symptoms, but to say ‘I don’t quite like my face’ is a very difficult conversation to have with somebody who’s trying to save your life (HC7). Underpinning the problem of drug effects, such as lipodystrophy and lipoatrophy, when deemed either not serious or not medical issues, is the way in which they are produced as outside the primary medical focus. As Persson (2003) states ‘This marginalisation of certain effects, reinforces the bias towards medical drugs as essentially lifesaving products and their prescription as necessarily therapeutic’. In the context of ART, it means that viral suppression can continue to be assessed apart from other phenomena that emerge with it. In other words, the way in which drugs and their effects are conceptualised contributes to making the dilemma with which patients and prescribers must then deal. Although, according to our interviewees, it is ‘unproven’ that lipodystrophy and lipoatrophy are damaging to physiological health, there is evidence on how it can be profoundly disabling (see, for example, Persson et al. 2003, Power et al. 2003). Indeed, according to the accounts of our interviewees about the nature of an ART structured HIV medical practice, even when ‘side effects’ are regarded as less consequential to the target of maintaining a ‘healthy’ immune system, they do affect doctor and patient decisions about ART. They are one of the factors that doctors must consider when discussing treatment options for a patient whose test results suggest they should start ART. They can also be a motivating issue for delaying, ceasing or altering ART. Indeed, the way in which a doctor understands the significance of ‘side effects’ may be indicative of their approach to patient involvement in decision making. I have a patient . . . [who] . . . ought to be taking her drugs but she is chancing it. She’s waiting because her figures, though low, are stable. Now that’s risky. But she’s banking on things changing because there’s such an effort to get new drugs with less toxicity that she’s waiting for that to happen . . . Before people would be saying ‘stupid’ and all this business, ‘why are you saying that when faced with death?’ But now lipodystrophy is extremely important. Faced with death you don’t worry about the way you look. But, suddenly, when you’ve got life everything becomes important and that is what has changed, really (HC5). The above account turns on the specific effect of lipodystrophy as a highly visible and distressing effect of ART. It also suggests an alignment by the doctor with the patient that can be attributed to shared knowledge with the patient about risk and uncertainty. Further, it points to the possibility for a © Blackwell Publishing Ltd/Editorial Board 2004


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style of medical reflexivity in which the traditional view of ‘doctor knows best’ can be questioned in relation to a broader perspective on the limits of medicine. From a less subject-oriented perspective, medical approaches to negotiating so-called ‘side-effects’ – such as lipodystrophy and lipoatrophy – might be understood in relation to the structuring effects of ‘routines’. Berg explains that dealing with phenomena that have not become a routinised part of medical disposal (problem solving) requires an action whose correctness must be explicitly negotiated (1992: 171). Over the course of time, and in relation to other phenomena that may emerge in the context of HIV management, the management of ‘side-effects’ may become ‘routine’. By becoming central to the nature of medical management, they may no longer occupy such an ambivalent status in HIV medical management. In the meantime, however, confronting ‘side-effects’ as a highly worrisome phenomenon for at least some patients and their clinicians remains a restructuring force in everyday clinical practice. In the following extract HC3 alludes to a bioethical issue posed by side effects, and highlights how a close working relationship with the patient might assist in negotiating this issue: Probably the most difficult thing is dealing with side effects that you have induced but that is partly where my approach of discussing and letting them [patients] make decisions, letting them or ensuring that the decision was as fully informed as possible, these are in part a way of reducing the em burdening guilt if something happens to go wrong, I don’t know how people [practitioners] decide ‘this is what you must do’ (HC3). A diverse terrain of reasoning for patient involvement Other clinicians in our study also gave emphasis to the role of patients in decisions affecting the management of ART. But the reasons varied. They ranged from sharing the responsibility and burden of risk in relation to side effects and long-term uncertain consequences, to reducing consultation time and achieving patient compliance. You know, the traditional thing about the doctor knows best and just do what they say, don’t have to think about it yourself, is just completely wrong. And I don’t really think it makes good medicine either . . . if you understand what you’re doing, why you’re doing it, why you have to do it, adherence is better for example. If patients don’t trust you, they’ll tell you they’ll do it but they won’t. So you know, they’ve got to be able to feel that you’re not gonna judge them if they get things wrong, that you’re on their side, that you’re gonna give both sides of the story, that you’re not just trying to give the medication, that you’ll give pros and cons and you’ll discuss it with them (HC6). The requirement for strict patient dosing adherence creates a particular relation between doctor and patient that is not built on ‘the doctor knows best’ © Blackwell Publishing Ltd/Editorial Board 2004

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so much as ‘the patient may not do what is best’. Consequently, the medical practitioner is positioned to perform a type of policing role. Through reference to viral load test results, the practitioner monitors not only the progress of the virus but also, possibly, whether the patient is telling the truth about his/ her dosing compliance. If the viral load increases while the patient is on ART, the practitioner may assume the patient has ‘failed’ to adhere (Flowers 2001, Race 2001). The assumption is based on the knowledge that without strict dosing adherence drug levels can fluctuate allowing drug resistance to develop (Mortimer and Loveday 2001). Viral load monitoring, however, also creates a situation in which doctors can establish a different style of relationship with their patient. HC6’s statement about making patients aware of why strict dosing is important highlights one of the new ways in which the technologies are shaping doctorpatient relations. Below, HC6 goes on to convey how this role may not necessarily be straightforward but, nevertheless, is critical. You’re trying to convince somebody that they need anti-retroviral therapy, you want them to take it because you think if they don’t take it they could suffer from a life-threatening illness. But you can’t withhold from them the fact that they may have problems. You might want to because it’s more likely to increase their chance [of compliance], but you mustn’t. I think they’re more likely to agree with the whole thing if you come up-front with them and say these are the problems, blah, blah, blah, but this way it’ll work. I think most clinicians know this (HC6). The following account by HC7, however, suggests that the current style of patient involvement may be more tenuous in the dynamic context of genomic-based knowledges of the virus. Increasing demand on medical practitioners to engage with data detailing changes in the genome of the virus is considered for its ability to exclude patients from prescribing decisions. If the account is correct, it suggests that the HIV doctor is being moved towards the position of greater responsibility in prescribing. Moreover, in contrast to HC3’s comments on the importance of sharing the responsibility for risk in a context of uncertainty, it also suggests that ethical responsibility for treatment decisions is returned to the doctor. Consequently, ethical responsibility for risk is also returned to the doctor: We got very good in the eighties dealing with uncertainty and the management of uncertainty. Both patients and doctors were familiar with this way of working. So when another new thing came along [ART], it was actually par for the course. It has only been in the last few years that it’s changed . . . I think we can easily share stuff about side effects, impact on lives, life expectancy, but once it’s . . . ‘does a 103 mutation confer this or that?’ and ‘does it interact with a 246 or is it to do with the 74?’ the knowledge is moved out into another place. I think it’ll make it harder © Blackwell Publishing Ltd/Editorial Board 2004


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to be sharing. So the gradient between the doctor and the patient has changed and doctors are now expected to have a competency and a knowledge, which they’ve always been expected to have, in some way, but now it’s taken a step . . . Almost backwards actually (HC7). Of all our interviewees, HC7 expressed the most concern about the potential of ART to transform the virus into a more difficult property to manage. However, HC7 was not alone in raising concern about the long-term effects of current medical interventions. These concerns about resistant virus and damaged bodies are interrelated. Although the manner in which they may be approached may vary according to how this interrelationship is conceived. One of the factors that may influence this later point is patient input, as indicated by the statement from HC5 cited earlier. But this, in turn, highlights a paradox in the role of technological sophistication for improving medicine. If we are to go by the perception of HC7, the patient is likely to be increasingly excluded by the growing complexity of technological information. The sort of certainty potentially achieved through increased technical knowledge undermines the more traditional expert doctor and lay patient relationship (Barnes cited in Webster 2002: 451). Shifting uncertainty and complexity Without more extensive study of the field, it is not possible to determine to what extent HC7’s comments signal a new aspect to the role of genomicbased diagnostics in HIV medicine. However, the perception that this may be taking place is significant in itself. It suggests that doctors may be refashioning their mode of communication with patients or at least attempting to find ways of explaining new areas of knowledge. The language of viral load, viral mutations, CD4 T cell counts and immune system constitution is now commonplace in HIV medicine. Yet the way in which this is incorporated into an individual schema of understanding is likely to vary. This is already evident in linguistic analyses of doctor/patient relations (see, for example, Moore et al. 2001). Further, as knowledge becomes more complex, more driven by the language of genetics, it is likely that a more everyday simplification of these data will also develop. This is especially likely given the role and functions of HIV treatment information organisations3. But it will be necessary to consider how this simplification, or translation into ‘lay’ terms, may obscure, erase or reconstitute the phenomena of the science they seek to explain (Schapiro 2001: 312). Statements by clinicians such as HC7 underscore the need for treatment organisations to decipher sophisticated medical knowledge for a lay audience. In the field of HIV, there are a number of highly-respected organisations. However, although ART is a molecular-based technology and shares similarities with developments posed by new medical technologies, HIV treatment-information organisations have not, to date, begun to engage in the debate around how the knowledge, and new medical phenomena, should be © Blackwell Publishing Ltd/Editorial Board 2004

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approached by patient/consumers. There is, for instance, little if any activism for the extension of pharmacogenetics to HIV medicine even though HIV management is almost entirely dependent on pharmaceutical interventions, with significant differences at the level of the individual immune response. The comments contained here give weight to the view that many people with HIV are ‘expert’ patients, informed of the latest in treatments and with sophisticated knowledge of the workings of drugs equivalent to that of some clinicians. Changing styles of clinical practice While all our interviewees mentioned that ART has brought about changes in medical practice, they also expressed reticence about whether the changes are necessarily an improvement. While pre-treatment medical practice involved dealing with pathologies and, if not being a ‘healer’, then providing a form of palliative care which often included intense inter-personal relationships, viral monitoring is now a technologically-oriented process which may involve shorter and less personal clinic appointments. Some of the change is clearly to do with the economics of providing pharmaceutical interventions through outpatient clinics to increasing numbers of patients. As fewer people die from AIDS as a result of treatment success, the prevalence of HIV increases and more people are living with the disease. The cost of the drugs takes up possible previous monies allocated to time with the patient. This is placing increased demand on services and means that the style of personal service previously available is unsustainable: Sometimes with HIV you’ve taken someone from very serious risk of death to something where they are much more stable and that involves their physical wellbeing and their psychological wellbeing. And clearly there is a great role for the consistency of a doctor-patient relationship, as there would be for, you know, psychology . . . or a particular nurse . . . But I do feel it’s . . . increasingly difficult to deliver to everyone who wants it because of the number of patients being newly diagnosed (HC6). Later in the interview HC6 said: Looking after chronic disease . . . I may know some patients now for 20 years, that’s quite a long emotional sort of attachment isn’t it? Hopefully that evolution of doctor-patient relationship will become, will last that length of time, that’d be great, but it will become looser, right? It may well be very tight at the beginning but over the years it becomes looser because therapies are better and it’s just a matter of checking once a year or something. That would be a very nice thing to be able to do . . . it’ll still have an emotional tie (HC6). Although not dealing with death may be a vast improvement for HIV doctors, it is important to note that the more pared-down relationship is not © Blackwell Publishing Ltd/Editorial Board 2004


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only different from what has gone before but can raise new concerns. For HC1, similar to participants in Gerbert et al.’s study (2002: 416), the increasing technologisation of HIV medicine creates somewhat of a quandary: I think there are some people who – these aren’t kind of bad people – but people who really think they are technicians, and their job is to . . . make sure they’re prescribing combination therapies safely and effectively and a lot of the other stuff . . . in which maybe you’re looking at other healthcare needs, maybe prevention needs . . . reproduction healthcare needs, can be done by someone else who’s literally an expert on that. ‘I’m the combination therapy expert’. And some people are shortening their consultation times, and seeing more people . . . That might be a good use of their expertise, I can kind of see that. There are other people who have a much wider idea about what should be available, but are finding that all of that is being squeezed out, because they’re spending so much time talking about combination therapy, going through the minutiae of the drug, that even in half an hour appointments, you can’t address wider issues (HC1). Reassessing treatment optimism Within the field of HIV, the term ‘optimism’ is frequently used to denote the ‘promise’ offered by new medical technologies to which Webster refers (2002: 443). In Gerbert et al.’s study (2000: 412), treatment optimism is said to have been expressed in relation to ‘helping HIV-seropositive patients live’. The commentary provided by some of our interviewees, however, suggests that not only has the sense of ‘optimism’ passed – as signalled from the outset in the opening quote on euphoria – the very suggestion of optimism has disturbing overtones. In response to being asked about the mix of excitement and cynicism that might be reported with the release of a new drug, HC1 stated: I think we’ve been there so many times before . . . If we have therapies I think there are always going to be problems, we already know that right from the word go that an anti-retroviral can cause problems. It’s in a tablet and that means it will probably cause adherence problems and that means it will probably cause metabolic problems. So we already know that it’s not the answer at all . . . So those people who are being very optimistic about it should just get a bit of realism (HC1). The difficulties now posed by the drugs are, in HC1’s view, critical to understanding current attitudes and expectations of HIV medical management: This idea that, those people who lived through the eighties and nineties who remember all their friends and partners dying, these people would be so grateful for combination therapies, as a lifesaver, that they wouldn’t be © Blackwell Publishing Ltd/Editorial Board 2004

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bothered about lipodystrophy or other side effects, I think the nature of people is not quite like that. People, at first, are very grateful and see the benefits. But now expectations from therapy are rather different (HC1). For those less aware of the very worrying aspects of current HIV management, ART might suggest that HIV is no longer a serious disease. Certainly this view has been the focus of much social research concerned to show whether ‘treatment optimism’ does or does not translate into unsafe sex practices (see, for example, International collaboration on HIV optimism 2003). However, although important for shedding light on how HIV is currently perceived, little investigation has been done on the experience of receiving an HIV diagnosis in the context of combination therapy. HC6 observes how, despite the extended life expectancy offered by ART, such a diagnosis continues to be a profoundly upsetting experience: I don’t think there are many people, I haven’t come across anybody who hasn’t found diagnosis of HIV difficult to deal with . . . I think people still look at it as a serious diagnosis, even so because they are infectious to others . . . Do they have different expectation? Yes, of course they will, because of what they’ve been told at the time. They will have different expectations due to the fact that they can monitor the therapy, monitor the infection much better, being in care is much better, therapies are much better, they [therapies] will improve (HC6). Of particular note, in this assessment of the significance of an HIV diagnosis, is the continuing issue of being infectious to another. It is an aspect of HIV that distinguishes it from other forms of chronic illness. It is also an important reminder of how ART may not address all of a patient’s concerns. Currently a debate is taking place within HIV medicine on whether an ‘undetectable’ viral load test result obtained from blood plasma can be extrapolated to seminal fluid (Baroso et al. 2000, Quinn et al. 2000). Already there is social research that suggests that notions of infectivity may be challenged by viral load test results (Davis et al. 2002, Rosengarten et al. 2000). The implications of challenged conceptions of infectivity have yet to be explored for what they mean to the day-to-day lived experience of being HIV positive. The role of the prescriber in creating ‘patients’ A specific feature of HIV management that has received some attention is the phenomenon of treating the virus before its effects become apparent to the patient and, by doing so, making the patient feel and/or look ill. Race et al. (2001: 2) state: ‘If HIV diagnosis created the possibility of being diagnosed as sick while feeling healthy, viral load testing has created the possibility of being diagnosed as acceptably healthy while feeling very unwell’. They go on to say that this places doctors and patients in a difficult relationship whereby the former must advocate ‘seemingly incongruous indices © Blackwell Publishing Ltd/Editorial Board 2004


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of health . . . to patients who are thoroughly demoralised’. This aspect of ART was raised by HC1 in order to highlight the difficulty of achieving treatment compliance. Interestingly, the extract also hints at the ethical dilemma in encouraging patients, otherwise feeling well, to commence a therapy very likely to cause some discomfort and, possibly, even serious risk. Another thing is that people try treatment when they’re well, and . . . it’s a kind of act of faith that the treatment’s going to keep you well, you know looking at your blood results and having some trust in your doctor when s/he says that if you don’t stay on them you’ll get sick. But if you’re feeling well when you’re starting therapy . . . and then you start getting ill, and the only illness you have is related to the combination therapy, well then you know it’s very difficult to have much faith in the therapy. So, again, a problem (HC1). The HIV antibody test and the viral load test are two diagnostic technologies, within HIV medicine, that have the capacity to create patients without symptoms, not unlike molecular technologies that penetrate the surface of an otherwise ‘healthy’ body (Webster 2002: 445). The work of Novas and Rose (2000) draws attention to the way in which new molecular knowledges of the body about genetic risk may give rise to new concepts of self and new ways of conceiving of self in relation to others. New knowledge of bodily identity may pose new questions, new possibilities for action or non-action (for example: whether to reproduce or not). It may also effect a new relationship to medicine whereby interventions are undertaken within a newly-forged temporal relationship to disease, otherwise unavailable without diagnostic technologies. But HIV ART is also active in producing iatrogenic disease and drug resistance. It is, however, not alone in doing so. Radiotherapy and chemotherapy patients may also be subject to ‘illness-creating’ technologies. In the long term, such interventions may also create new diseases, susceptibilities and incapacities. And, non-symptomatic bacterial or other viral infection may bring about drug resistance. The problem of drug (or radiation) induced effects is a growing one in medicine. While HIV medicine may not be able to resolve it, conflict between ‘feeling sick’ and ‘being well’ underscores the productive and worrisome relation medical innovations may have for those requiring them. Although this paper provides only a cursory recognition of the historical nature of current HIV medical practice shaped by ART, we are keen to initiate consideration of the contribution of those for whom ART is intended. Yallop et al. (2002: 435) report that some doctors see their current role as more significant than during pre-combination therapy. But what is not accounted for, although implicit in the statements of Yallop et al.’s interviewees as well as the clinicians cited in this paper, is the manner in which the diverse matter of bodies is caught in an ‘intra-relationship’ with ART (Barad 1998: 90, 91). The biological status of a body is changed by the intervention of ART. Newly diagnosed, the body is then returned for further © Blackwell Publishing Ltd/Editorial Board 2004

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interventions and so on. In the process of collaborating with ART, the virus may be altered, most notably in terms of developing into drug resistant strains. Other iatrogenic conditions may also be incurred requiring additional diagnostics and possibly other forms of intervention. Broader implications While medical management has altered over the length of the epidemic, its delivery also depends on the state of the health of the person who presents for treatment. For doctors working with diverse population groups, the framing of the current state of HIV medicine as an advance on a pre-ART era is inadequate and possibly politically worrisome also. The following account by HC7 provides a very complex view of this scenario. It includes the difficulty of dealing with new more optimistic expectations from HIV medical practice in light of patient diversity: When things don’t go well and people are very sick, it’s more difficult because the expectation is that you won’t get to that point . . . We’ve got an old cohort of patients many of whom are getting to the end of the road and we’re also seeing people with a variety of terminal things that we didn’t see before combination therapy. But also, because of the particular environment that I work in, we’re seeing people who’ve never accessed therapy, and so, we’re still doing some of the old-fashioned stuff and people are dying before our very eyes of acute untreated disease and of long heavily treated disease, but the expectations of the team are that we can fix it. And so, those events are now more powerful and more disturbing to the equanimity of the team than they were I think, before combination therapy (HC7). Attention to issues nominated in response to the perceived ‘newness’ of a medical technology, such as ART, can result in more longstanding issues being overlooked. Indeed, as the lens is focused on challenges posed by new technologies, issues arising as a result of a historically disparate context may be hard to reconcile. Besides the challenges posed by uncertainty and risk due to ART, there is the highly disturbing and urgent issue of people continuing to die from AIDS in a country such as the UK with good treatment access. One of the more obvious contributions to this situation is the problem of late presentation, that is, when patients seek treatment after prolonged infection and, consequently, with irrevocable damage to their immune system. But behind this ‘medical’ phenomena may be a host of social issues that limit earlier patient access to medical services4. Within the space of the clinic, that is, for individuals who are able to access medical services, it is imperative that the clinician is able to communicate effectively. The following extract draws attention to how a changing HIV-affected population group has given rise to differences, across as well as through time, which require different communication skills: © Blackwell Publishing Ltd/Editorial Board 2004


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When I first went into HIV it was really a disease of white, middle class wealthy and well-educated gay men who were highly motivated to find out about the disease and there wasn’t a whole lot to know about it, really. Now a lot of gay men still have HIV but suddenly they’re ehm porters, and you know admin consultants and market traders, they’re not . . . although that doesn’t mean that they’re still not interesting people to look after, . . . but they’re less well informed and need to be facilitated much more and there’s a lot MORE [emphatic] for them to have to understand. Then of course you have other groups such as drug users and African men and women, and that’s, that’s much harder . . . Like some African communities expect the doctor to act in a very paternalistic way and if you ask them what they think you should do they then see that as a sign of . . . ‘Well who is this person?’ ‘What?’ And also . . . if someone is recently arrived from Africa they’re concept of . . . ‘well what’s a virus?’ Ehm it really is very different. You have to completely change how you explain something to someone if they don’t even have a conception of what a virus is and what infection is (HC2). HC8 offers yet another perspective on the diverse nature of the epidemic within a city such as London. Here poorer resource allocation, in an area, intersects with the geographical location of disadvantaged patient groups, particularly migrant groups: There are the big centres, which have big patient loads, well-developed research units, and do a lot of clinical trials . . . and then there are centres like this one. In actual fact there is a second wave of clinics within London and outer London which predominantly see people from African, sub-Saharan Africa . . . Some trials are available, extended access drugs are available, but, for example, Newfil – which is a kind of Collagen substitute for people who have likely severe lipodystrophy – we don’t have that available here but in some big centres they can access it. There aren’t very many things, . . . you could probably name them really . . . say T-20 say, which is a new P gene inhibitor which is an injection. Um, we can’t have access to that . . . (HC8). The various ways that the epidemic might be viewed in a country such as the UK, or even within a more specific and specialised area such as London, point to the need to carefully consider how various sorts of differences play a part in what comprises HIV at this time. Besides disparities in the delivery of HIV medical services touched upon by HC8, it is clear that those living with HIV present with historically affected bodies as well as knowledges and communication skills. The treatment options for those exposed earlier to AZT monotherapy are likely to have different treatment needs from those who are treatment naïve in a biological sense and/or social sense. Issues of early diagnosis compared with late-stage infection are also integral to the form that HIV may take in the clinical setting. © Blackwell Publishing Ltd/Editorial Board 2004

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Conclusion This paper has sought to highlight the complex and somewhat fraught nature of HIV medicine in the context of what might, more usually, be regarded as a privileged site of access to highly-specialised medical technologies. It has further sought to identify some of the ways in which ART is shaping and to some extent being shaped by the thinking of specialist medical practitioners. Webster (2002), Novas and Rose (2000), Race (2001) and Rosengarten (2002) all make apparent that medical technologies frequently do more than intended or anticipated. In the HIV medical field, it is apparent that medical technologies produce new biological phenomena, most evidently ‘resistant’ virus and iatrogenic disease. They also generate new modes of delivery and new styles of doctor-patient relations. Associated with new biological and social phenomena are new medical, ethical and social questions and a now well-identified set of challenges. On the basis of our interview material, one of the most pervasive ways in which the current field is understood – although perhaps without adequate scrutiny – is in the tension between extended life expectancy and risk of iatrogenic diseases and/or viral drug resistance. Within this tension, the onus of responsibility for decision making which may have long-term and treatment-excluding consequences may be situated with the practitioner, with the patient or shared. None are entirely satisfactory and suggest that further inquiry into the nature of the technology is required to address a situation where ‘care’ and ‘treating’ is overshadowed by risk of distressing and/or disabling side effects. Further, concern about unknown risks in the long term may, in fact, be shaping decisions about treatments in an unintended manner. The dynamics of the current situation – in which prescribing practices have altered significantly from the early days of therapies – also highlight the tenuous nature of this current phase in the epidemic. They suggest that ART is part of an ongoing scenario which is negotiated with an awareness, by some clinicians at least, of what ART has meant in terms of transforming HIV/AIDS to a situation where AIDS can be reversed and much of HIV medical practice no longer includes opportunistic infections in its repertoire. At this point it is difficult to draw conclusions from what the changes in medical knowledges and styles of service delivery may mean for those living with the virus. Already, though, there is concern that the increasing specialisation and demand to engage with increasingly complex molecular-based knowledge may undercut a well-established ‘expert’ patient. If so, this will most certainly alter the experience and practice of the HIV clinician. It may also contest the ART-enabled construction of ‘active consumer’ which has, arguably, replaced that of ‘passive patient’ in pharmaceutical promotion and potentially in clinical practice (Fuqua 2002, Race 2001, Rosengarten 2004). Although the specifics of what might be termed ‘genomic’ testing for viral mutations are beyond the scope of our inquiry, it seems probable that the move © Blackwell Publishing Ltd/Editorial Board 2004


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to ever more complex accounts of different genes and multi-variations, for anticipating a medically observable effect, may, as HC7 stated, be increasing the gradient for patient involvement. Certainly, this will have implications for those practitioners who now deal with issues posed by risk and uncertainty through an inclusive relationship with their patients. Somewhat paradoxically, the clinical setting – well established as a supportive environment for ‘expert’ patient involvement – may now be in doubt as a viable site for this mode of personhood. Up until now, the HIV field has demonstrated the presence of a highly sophisticated infrastructure which may be competent to tackle the demand for refitting ‘the expert patient’ to engage at a ‘new gradient’. However, before proceeding with the drive to maintain ‘patient expertise’, it might also be important to reflect on how this could ensure better medical, ethical and social outcomes. As the role of the HIV medical practitioner has shifted from ‘carer to risk taker’ the medical, ethical and social stakes have changed. With this change are new challenges for patient involvement, perhaps most especially a mode of involvement able to resist a potential shift of responsibility for risk to the patient while also inclusive of patient diversity. Important for tackling the ongoing developments within the HIV field will be their consideration against a backdrop of struggle within medicine and within the broader community for more and better resources. Prescribing decisions involve many skills, knowledges and also assumptions. The latter include assumptions about pharmaceutical properties, the meaning of diagnostic test results and about the patient. This process takes place within a field that has experienced what those included here regard as ‘huge’ change. But it is important to note that the change is not uniform across bodies or across the geographical scope of NHS services. Living with HIV in one part of London, for example, may be a different experience from living with it in another. In this paper we have not been able to explore the implications of these sorts of differences but there is enough evidence to highlight the need for further investigation. We are also especially aware of how our focus on clinicians working with adults infected with HIV and mainly in the central areas of London has tended to overlook more specific differences in individual case management, particularly in terms of co-infection such as with Hepatitis C or tuberculosis. Nor have we been able to consider the more particular field of paediatric HIV medicine. These areas and possibly a host of others, notwithstanding those concerning doctor/drug company relations, remain for future social analyses. Some seven years on from the initial promise of ART, much of the optimism has gone for those working with and/or living with it. The risks to the body do not outweigh the risk of the virus if left untreated in the long term. But the risks have tempered the thinking and practice of clinicians in their use of the drugs. In doing so, they reveal the importance of reflexive practice in prescribing patterns, evaluation of new interventions and, just as importantly, doctor/patient relations. In light of what is perceived by clinicians as changing © Blackwell Publishing Ltd/Editorial Board 2004

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knowledge requirements, changing practice and yet considerable uncertainty about medical outcomes, it is evident that the epidemic is far from over. Rather it appears as another phase in the struggle against the virus and one that is providing new insights into the scope of HIV medical management, as well as the field of medical innovation more generally. Address for correspondence: Marsha Rosengarten, Department of Sociology, Goldsmiths College, University of London, New Cross SE14 6NW e-mail: [email protected]

Acknowledgements This paper was undertaken as part of a study titled ‘Transitions in HIV Management: the role of HIV innovative health technologies’. The study was funded by the Innovative Health Technologies Programme, UK Economic and Social Research Council. We are especially grateful to the clinicians who participated in the research and also to Mortimer Market Clinic, Royal Free and University College Medical School, University College London which provided overall support to the project.

Notes 1

For clinical purposes, viral load is measured in blood plasma and functions as a surrogate marker for disease progression and for monitoring the therapeutic effects of combination HIV anti-retroviral combination therapies (Mortimer & Loveday 2001). 2 For more explanation of lipodystrophy and possible causes under debate see http://www.aidsmap.com/treatments 3 In the UK there are a number of non-government organisations that provide treatment information. The most prominent of these are National AIDS Map and HIV i-base. 4 Further research conducted by the authors of this paper suggests that some members of African HIV affected communities do not anticipate an HIV positive diagnosis and therefore do not seek testing. It is also likely that continuing fear of the knowledge of having HIV, fear of stigma associated with the diagnosis, migrant lack of familiarity with medical services and also possible lack of knowledge about long term prospects of living with HIV deters people from seeking access.

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