Shared embarrassment: (not) talking about sex in HIV-related doctor-patient encounters.

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Shared Embarrassment: (Not) Talking about Sex in HIV-Related Doctor–Patient Encounters Fernando Villaamil

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Department of Social Anthropology, Universidad Complutense de Madrid, Madrid, Spain Accepted author version posted online: 23 Jul 2013.Published online: 27 Jun 2014.

Click for updates To cite this article: Fernando Villaamil (2014) Shared Embarrassment: (Not) Talking about Sex in HIVRelated Doctor–Patient Encounters, Medical Anthropology: Cross-Cultural Studies in Health and Illness, 33:4, 335-350, DOI: 10.1080/01459740.2013.826215 To link to this article: http://dx.doi.org/10.1080/01459740.2013.826215

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Medical Anthropology, 33: 335–350, 2014 Copyright © 2014 Taylor & Francis Group, LLC ISSN: 0145-9740 print/1545-5882 online DOI: 10.1080/01459740.2013.826215

Shared Embarrassment: (Not) Talking about Sex in HIV-Related Doctor–Patient Encounters Fernando Villaamil


Department of Social Anthropology, Universidad Complutense de Madrid, Madrid, Spain

The incorporation of HIV prevention into medical care is a central element of the redefinition of HIV prevention policies currently underway. In this article, I explore how safer sexual practices are promoted in doctor–patient encounters in the context of treatment of HIV infection in Madrid, Spain. Issues pertaining to the sexuality of people with HIV were usually absent after the initial visit, despite national and international recommendations that these be addressed. This absence is analyzed not as a mere lack or inefficiency but as a feature of prevention as a technology, that is, as a concrete array of relations of power, knowledge, and legitimacy. Silence surrounding sexual matters legitimates the power relationship established between doctors and patients around a biomedical narrative of (safer) sexual practices and shapes a field of knowledge and visibility with regard to the sexuality of people with HIV. Keywords biopolitics, HIV/AIDS, positive prevention, subjectivity, technology

Public health, as a specific modality of relationship between the State and its citizens (Rose 2006; Rose and Novas 2005), has been conceptualized among social scientists as a governmental project that is “at the heart of politics nowadays” (Fassin and Memmi 2004:10). As part of this larger framework, risk prevention and health education represent a pivotal point of technologies of the self and the politization of the life of the species (Foucault 1977, 2008; Rose 2006). In this respect, it makes sense to approach the practices, techniques, institutions, bodies, and subjectivities that we know as HIV prevention, and ‘prevention with positives (PP)’ as practiced in doctor–patient encounters specifically, as biotechnologies, “hybrid assemblages of knowledges, instruments, persons, systems of judgment, buildings and spaces, underpinned at the programmatic level by certain presuppositions made about human beings” (Rose 2006:26; see also Davis 2009; Davis and Squire 2010). PP as biotechnology is part of the formative process of “making up” HIV-positive subjectivities and bodies (Hacking 2006; Rosengarten 2009). PP also produces a specific form of legitimacy and knowledge around a naturalized entity, HIV FERNANDO VILLAAMIL is associate professor of Social Anthropology in the Department of Social Anthropology at the Universidad Complutense, Madrid, Spain. His current work focuses on the social aspects of medical technologies, specifically the social organization of HIV testing. Address correspondence to Dr. Fernando Villaamil, Universidad Complutense de Madrid, Department of Social Anthropology, Campus de Somosaguas s/n Madrid 28223, Spain. E-mail: [email protected]


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transmission, in a manner that is deeply affected by the relationship between doctors and patients in a specific historical and institutional context. As pointed out by Haidar (2009) and Lock and Nguyen (2010), it might be problematic to analyze biotechnologies solely as discursive constructions. Lock and Nguyen and Reynolds-Whyte (2009) made a strong point when arguing the need to account for the articulation of biotechnologies into concrete practices, without which the program advanced by Rose easily falls into one-sidedness and the same monolithism and universalism that is constitutive in biomedicine. In the intricacies of practices related with technologies, the actual meanings, objects, morals, and social relationships of a specific technology as promoted by experts and as used in specific strategic settings by laypersons (Menéndez 2003) might indeed render the social relevance of medical technologies quite differently from those an outsider might expect from the sole consideration of the technical and programmatic discourses underpinning such biotechnological objects and socialities. I suggest that micro-political, everyday relationships and practices regarding the use of biotechnologies should be taken into account in order to assess their social meaning and political relevance. As Fassin (2007), Biehl (2007), and Petryna (2002) showed, the relationship between power and life cannot be read from general legal or institutional arrangements, but its nature must be derived from the concrete form that biotechnologies acquire as they become social practices carried out by social agents in specific historical, political, and institutional conditions. Apprehending the social character of medical technologies requires an intensive, ethnographic attention to their social life (Biehl and Moran-Thomas 2009; Reynolds-Whyte 2009). Medical technologies affect and are affected by patients’ subjectivities and subjective strategies (Biehl and Moran-Thomas 2009). From this perspective, the relationship between lay and expert knowledges, bodies, and selves is transactional in nature and must be captured in specific socio-historical and institutional frameworks (Menéndez 2003; Mol 2008; Pizza 2002, 2005; Rosengarten 2009). Practitioners make arrangements in doctor–patient encounters that derive not only from the features of technologies themselves but from learned definitions of the situation and their professional role (Datye et al. 2006; Kielmann et al. 2005). Patients are not, as Gramsci said, “trained gorillas” (Pizza 2002:38). They do not embody technologies passively, but insert and re-fashion them in strategies that can never be fully predicted from programmatic discourses or the technical arguments that underpin those technologies. In what follows I argue that silence can be a salient feature of HIV prevention for positives (PP) as deployed in concrete interactions between doctors and patients. I describe first how issues pertaining to the sexuality of people with HIV and the transmission of HIV were addressed in initial visits and then, as a norm, were absent afterwards. This is analyzed against the background of how information is exchanged in everyday transactions between people with HIV and their doctors. From this standpoint, silence around sexual matters can be interpreted not as a mere lack or inefficiency but as something fraught with consequences. The actual way a privileged technology of HIV prevention (‘safer sex’) is deployed in the interactional setting of the doctor’s practice (counseling) is shaped by and is fundamental in shaping aspects of the social universe of doctor–patient encounters: the asymmetrical relationship that is established between doctors and patients around (safer) sexual practices, and the field of forms of knowledge and invisibility around the sexual experience of people with HIV. Given the moral and political complexities of living with HIV, information management has traditionally been a particularly vexing issue. Authors have explored ethnographically the uses of silence in interpersonal and clinical contexts. Klitzman and Bayer (2003) showed how the


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everyday experience of people with HIV is fraught with dilemmas of secrecy, morality, and trust. Huby (1997) found in her study of patient’s satisfaction with the care provided by specialist hospital departments and community-based services that patients’ silence about significant parts of their illness experience could be interpreted as strategies of resistance to “the complex and pervasive system of care upon which they had come to rely” (p. 4). Datye and colleagues (2006) and Butt (2011) showed compellingly the extent to which international standards and recommendations regarding doctor–patient communication technologies can undergo deep resignifications and adaptations as they become embedded in particular political, cultural, and institutional settings. Eaton (2008) also showed how culturally and socially embedded “ways of knowing aids” (p. 239) (disclosing, silencing, revealing, disguising) reflect “understandings of social relations, the body and affliction that animate experience, construct knowledge and define choice in relation to HIV” (p. 240). I argue that what counts as legitimate forms of knowledge and intervention in the clinical encounter cannot be taken for granted. They do not merely reflect previously existing patterns of response to a delicate issue as argued, for instance, by Wood and Lambert (2008), but are dependent on the uneven capacity of defining what should be addressed in doctor–patient encounters, in what terms, and under what conditions. In this sense, what is said and what remains unsaid are of equal importance. What becomes legitimate knowledge and what is set aside as an aspect of patients’ personal intimacy must be critically analyzed as part of what a technology becomes as it travels from the desks of international policy experts to actual day to day interactions in specific socio-historical contexts (Hardon and Dilger 2011).

POSITIVE PREVENTION Prevention of sexual transmission of HIV is a complex social object (Race 2009; Rosengarten 2009). It involves a set of institutional arrangements, discourses and knowledges, subjectivities, moral economies, subject positions, and power hierarchies (Treichler 1999). It unfolds in a specific framework of socio-historical relationships, which both affect and are affected by the social object ‘prevention.’ The prevention of the sexual transmission of HIV has seen a steady history of dispute over its specific configuration (Altman 1994; Martin 1994; Patton 1996; Rosengarten 2009). It has involved various stakeholders, both at local and supranational level, whose relationships have not been stable (Kippax 2010). Historically in Spain, as elsewhere, in the field of HIV, labor has been clearly divided into prevention tasks and treatment tasks. A National AIDS Commission (Plan Nacional sobre el Sida) devised a national prevention strategy.1 Prevention is carried out by nongovernmental organizations and coordinated by regional governments’ public health authorities, which provide most of the funds. The regions act with a high degree of autonomy. In Madrid, nongovernmental organizations (NGOs) of different kinds have played a key role in the fight against the spread of HIV infection, carrying out the bulk of HIV prevention interventions, especially among so-called hard to reach populations. Although in cases of extreme social exclusion, a hospital social worker or local social services may manage the available social care resources (pensions, benefits, and housing), NGOs provide most services to people with HIV—from psychological therapy to informal advice on treatment. Public mental health services are extremely overloaded, and neither doctors nor


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patients trust their efficacy. It is important to point out that, historically, NGOs concerned with AIDS in Madrid have operated within a framework of meager funding; this situation worsened with the withdrawal of prevention subsidies in 2010 (Público/Europa Press 2010). A total amount of 242, 926.76 Euros, due from 2009, was finally distributed to 18 NGOs in 2012 to support a total of 31 prevention programs: an average of C 7800 per program. Health care providers, until now, have had a less defined role in HIV prevention. It was not until 2008 that positive prevention in doctor–patient encounters was addressed as a priority by the National AIDS Commission in the Plan Multisectorial 2008-2012 (PNS 2008).This does not necessarily mean that positive prevention was not practiced or seen as important previously. The Plan (PNS 2008:87) states that “prevention among people with HIV has been almost limited to the relationship between doctor and HIV patient,” ignoring in this context the role of self-help groups and NGO services. At the same time, the Plan acknowledged that there had been no specific training for doctors, and that there was “growing evidence” (PNS 2008:87) indicating that actual interventions initiated by doctors were insufficient, citing a French source to support this claim.2 However, there are no studies exploring these issues, and what actually takes place in consultations is presupposed rather than known. Nevertheless, the insistence on the need to ‘do more’ in the Plan indicates a certain expectation both that doctors will participate in prevention and that there is reluctance to do so on their part. Inside hospital units, doctors do not take actions to coordinate or discuss the way they deal with prevention. Further, doctors who were interviewed did not use a standardized protocol. In any case, given the extensive autonomy of action of the agents concerned, the Plan should be understood as a set of recommendations rather than obligatory guidelines. At the time of carrying out the research, there was no referral protocol or active collaboration program with NGOs at hospitals. The relationship in the past has ranged from setting up onsite mutual support groups, on the one hand, to manifest hostility toward establishing any kind of collaboration, on the other, depending on the hospital. There has been no attempt, institutional or informal, to coordinate prevention activities, either by hospitals or NGOs, and even those physicians open to collaboration with NGOs insisted that prevention was part of their remit. Further, there is no specific policy document regarding the model of counseling supported by the PNS, and Madrid’s regional AIDS authorities have not issued any recommendation concerning this question. Doctors we interviewed were familiar with the recommendations issued by the Centers for Disease Control and Prevention (CDC 2001) and the European Center for Disease Prevention and Control (2010). The latter does not specify what is meant by ‘counseling.’ The much cited recommendations of the CDC guidelines for counseling, testing and referral (CDC 2001) and the recommendations for HIV testing in health care settings (Branson et al. 2006) follow a top-down approach of a ‘client–provider’ relationship, based on the unidirectional transmission of information (Kippax 2010). These recommendations rely on the same narrow concept of prevention (and individual agency, for that matter) we will see among the doctors we interviewed. Although the guidelines (CDC 2001) explicitly advocate an open approach to counseling, the delimitation of what counts as HIV-related problems to be legitimately addressed during counseling sessions are ultimately those that can easily be incorporated to a strictly medical biological narrative of HIV infection, as seen in the following recommendation:


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Keep the session focused on HIV risk reduction. Each counseling session should be tailored to address the personal HIV risk of the client rather than providing a predetermined set of information. Although counselors must be willing to address problems that pose barriers to HIV risk reduction (e.g., alcohol use in certain situations), counselors should not allow the session to be distracted by the client’s additional problems unrelated to HIV. (CDC 2001:5)

According to Kippax (2010), such biomedical models rely upon behaviors (universal, discrete acts implying organs), as opposed to practices (socially produced and locally situated interactional processes). Arguably, the biomedical model also involves presuppositions about human beings (Rose 2006) and the way they should relate to others that are moral in nature. The ‘client’ is represented as a responsible, rational individual who wisely manages the risk of infecting others. Unprotected sex is thus represented as failure due to ‘barriers’ to an otherwise rational behavior (Kippax 2010). Risk management is thus privatized (Race 2001), with strong disciplining effects. A distinction between relevant problems and personal problems is drawn; I return to this point later. On an international level, the expansion of prevention programs that specifically target people living with HIV seems to imply a redefinition of the role of the actors involved. While in the first years of the epidemic, other tasks (fight against stigma, care, and treatment advocacy) were considered a priority (Davis and Squire 2010), since the advent of ART especially PP has become crucial in the management of the epidemic from a public health perspective (Janssen et al. 2001; Wolitsky et al. 2005). The role of health care services in PP is being redefined and expanded, not without controversy (GNP+ and UNAIDS 2009). In Spain, the international trend toward the integration of prevention in treatment (Rosengarten 2009) coincided in time with a weakening of NGOs. Their involvement in the design of a national strategy for the fight against HIV/AIDS was not institutionalized until 2003 (Fundación FIPSE 2005), and then subsequently dismantled in 2012. In the context of a devastating economic and fiscal crisis in Spain and particularly in the region of Madrid, the expenditure of public administrations on financing preventive interventions of NGOs was withdrawn, as mentioned. The rationale was that prevention activities should be integrated within existing health structures and programs (primary care and hospitals) in a context of the ‘normalization’ of HIV infection as well as rationalizing state expenditure (Sevillano 2010). Although this is in contradiction to recommendations of international organizations, community organizations are being systematically marginalized while positive prevention and support is shifting mainly to health care settings. HIV should be treated from now on ‘like any other disease,’ de facto putting an end to AIDS exceptionalism, that is, “the idea that the HIV/AIDS epidemic requires a response above and beyond “normal” health interventions” (Smith and Whiteside 2010). In this article, I reflect on these recent developments from the perspective of the implicit consequences of what can be termed a ‘return to normal’ in HIV treatment and prevention in order to contribute to current debates about the consequences of the normalization of HIV and the integration of treatment technologies in prevention interventions (Kippax 2010; Mykhalovskiy and Rosengarten 2009). In doing so, I do not wish to romanticize the role of community: I am well aware of its limitations and shortcomings. From 2008 to 2010, the research team I coordinated explored how antiretroviral treatments and prevention of transmission were addressed in hospital consultations in the region of Madrid


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(Spain), a study commissioned by the Institute of Public Health of the region. From the first contacts with us, the public health officials who were our interlocutors expressed their concern for the degree of implementation of both national and international recommendations on positive prevention in doctor–patient encounters. The extent of doctor’s involvement in PP was unknown, but public health officials expected it to be low. We were asked to both explore the potentialities of the doctor–patient encounter and to map the prevention and promotion of adherence that was actually carried out at hospital level. Fourteen interviews were conducted with doctors working in HIV consultations at 14 of the 15 hospitals in Madrid belonging to the public hospital network; one declined to participate. The doctors were recruited based on their experience in the corresponding HIV unit. Seven of the doctors interviewed had started treating people with HIV in the 1980s, while the rest had more limited experience. Most HIV treatment units were part of Internal Medicine Departments, with a few exceptions due to the specific circumstances in which hospital care to people with HIV had been organized in the 1980s and 1990s. Another 30 interviews were conducted with people with HIV in treatment, applying the diversification criteria of the sample by gender (16 men, 14 women, of whom 4 were trans-sexual), age and declared path of infection (7 through heterosexual practices, 10 through homosexual practices, 13 through shared needles). The interviewees were contacted through three associations of people living with HIV, active in the region of Madrid, and to ensure diversity of the sample, we recruited participants with different degrees of involvement with the associations. Thus, six of the interviewees took an active part in their associations as volunteers, whereas the rest had sporadic or no contact with the associations. All of them were in treatment at the time of the interviews. Last, eight observation sessions were carried out at a HIV unit and seven nurses and five social workers at public hospitals were interviewed, as well as a psychologist, a social worker, and a lawyer who worked at two different NGOs. We were not authorized to carry out observations in the initial consultations of recently diagnosed patients. In what follows, I present mainly the materials from the interviews to doctors and patients, using the interviews with other professionals and those obtained through observation for triangulation purposes. We resorted to a transactional model of the doctor–patient relationship to understand the limitations and potentialities of the consultation, understood as a social and formative space whose fundamental focus is treatment. Structured around clinical management of HIV is a field of interactions in which the strategies deployed by patients in the management of their status as a person with HIV may be either visible or invisible. We approached the management of the seropositive status, taking into account its ambiguities in particular with regard to the role of medical technologies and the ambivalence of the medication and safer sex that control the virus while making it present in daily experience. We observed that, in contrast to what occurs with sexuality–as shown next–compliance control is seen by doctors as a field where their authority is deployed (and potentially questioned). As noted, HIV consultations evolve around treatment and, in this sense, are highly hierarchical. The promotion of adherence in a hierarchical setting tends to obscure the complex experience of the body, mediated by medication, deeply influenced by patients’ social conditions and laden with ambivalence, as treatment side effects and strictures impose a reflexive consciousness of the body in an undesired way. In what follows, I address the impact on the promotion of safer practices of this hierarchical relationship that takes place in doctor’s consultations with patients.


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THE ABSENCE OF POSITIVE PREVENTION IN DOCTOR–PATIENT ENCOUNTERS


All the clinicians interviewed stressed the importance of promoting safer sex in their interactions with patients. Nevertheless, they considered that their proper remit was the ‘management of HIV infection,’ that is, the control of virus replication in the body and, more generally, keeping the patient in an acceptable health condition: I work as a physician only seeing patients infected with HIV, I have little to do with primary prevention of infection out there . . . well, if someone asks for collaboration I gladly agree . . . but that is not my primary business. It may have more to do with the job of the primary care physician, keeping people who are not infected from becoming infected . . . But nevertheless we do have a very important tool, in that we are the ones who oversee, and monitor and track infected people who are at any given time doing the wrong thing, and can transmit it (HIV) to the rest of the population. This is very important. Among physicians involved in this there is a clear commitment in this regard. (Dr. S)

The importance given to HIV prevention with positives at the discursive level is in stark contrast with observed interactions and with the practices reported by both patients and clinicians. In interviews, both doctors and patients generally coincided in their descriptions of what goes on in the doctor’s practice in relation to the promotion of safer sex: sexual practices and means of transmission are intensively addressed in initial doctor–patient encounters, immediately after diagnosis. Patients are given the chance to ask questions of and seek clarifications from the doctor. Doctors leave open the possibility of any further questions whenever the patient chooses, at any point in the future. After these first encounters, however, doctors will not address questions of sex unless they “detect” that the patient is experiencing “troubles with safer sex,” or unless this is explicitly raised by the patient. According to the observations of both doctors and patients, as well as our own observations, this happens rarely. In the initial sessions, besides the preventive intervention, doctors declared that they also gave information to their new patients about HIV infection and treatment, and about the practicalities of dealing with hospital structures. Doctors and patients described the initial counseling session as fitting quite well with the biomedical narrative discussed previously: an emphasis on how HIV is transmitted and how infecting others and getting reinfected can be avoided—basically, by using condoms. The tone is one of scientific authority: I always say condoms must always, always be here, here! [Making a circle with her thumb and forefinger, and beating her brow with them] Always! Not here, not in your pocket, here! In any relationship you have! The first thing you must do is—wear the condom on the forehead, know that you’ve got to put it on, you have to protect others and you have to protect yourself. (Dr. Q)

The way that doctors elaborate on their specific remit with regard to prevention with positives is consistently built around two central axes: the basic information to be provided to the patient, and the elimination of any fears they might have. The basic information included using condoms, the idea of superinfection, and basic epidemiological information, with a focus on the precautions to be taken in daily life to prevent transmission. Fears are sometimes conceived of as due to associating HIV with death and guilt, as Dr. L phrased it. Fears are understood as the result of a lack of information, which can be replaced with certainties from scientific knowledge possessed

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by health care providers. For Doctor V, scientific accuracy might even be less important than certainty. In his description of first encounters, he explained: My very clear specific message is: you have a transmittable disease. It is a transmittable virus; not an illness. Because sometimes I tell them, you aren’t ill, you are infected. You have a transmittable virus. They may slip into believing that if they are doing well, with a negative viral load, they do not transmit it. There can be no room left for doubt. If you have HIV you have to use a condom and that’s that. If you leave the slightest room for any other interpretation, they are going to grab it. (Dr. V)


It is worth noting that the doctor quoted below refers to the prevention advice given in these first sessions as “the norms,” which are even given in writing: The issue of prevention has a greater presence in the first visits, doesn’t it? Later, when they have become old friends, their questions are occasional, and we no longer insist. In appointment number 110 we don’t insist, and say “hey, you remember about prevention.” So it is part of the material we given them at the start, and then, well, in my experience, we address prevention mainly in . . . the first three visits. That is when the spontaneous questions arise. Of course they sometimes ask you something a long time after, “look, this has happened to me, is there any risk in it?” “Look, I’ve been wondering about this, is there any risk?” The actual norms, we state them in the first visits. In writing and verbally. (Dr. S)

For some physicians, this absence of discussion of the prevention of sexual transmission after the first visit is not seen as a contradiction, since prevention is not considered a central part of their remit. Others are aware that this limited role in prevention is less than what is required by international standards, which they explain in terms of the need to prioritize time in doctor–patient encounters. In this regard, the following quote summarizes a critical opinion—expressed in a tone of resignation—of a situation that is perceived as motivated in part by the excessive workload, in part by the routinization and the growing technical complexity of medical intervention in the management of HIV infection; this has occurred especially since the introduction of ART and, in turn, has changed the doctor–patient relationship: In this environment there is so much pressure to discuss the latest antiretroviral whatnot, the slightest development. . . . I don’t mean to trivialize. . . . But I mean, the pressure to pay attention to the slightest advance . . . in . . . Lipodystrophy or . . . I don’t know, whatever . . . the latest, slightest development in an obscure paper. . . . I don’t know, what effect this specific medication has on whatever. . . . So, this information overload, this approach to the problems of HIV by focusing all the attention on the medication, even on the part of patients, and on the part of many NGOs, and of many . . . patient associations, right? I mean, the neurosis is such that it’s already. . . . I think it absorbs all our attention. (Dr. C)

During observation the question of prevention of transmission emerged in two instances, and was addressed through statements about the mechanisms of transmission, risks of infection, and infectivity. In a case of post-exposure prophylaxis, the patient initiated an explanation of the circumstances of unsafe practice. The doctor heard what the patient had to say, but did not encourage any further explanations. In the second case, the patient asked for technical information about HIV transmission, conveying through his tone and gestures that the motives and circumstances of the unsafe sexual practices were beyond discussion. Even so, the physician devoted much of the consultation time to ‘small talk.’ Most of the doctors interviewed regarded some of their long-term patients as ‘old friends’:


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If the patient is stable and has no problem, the doctor–patient encounter can be what we call a superfast visit, in other words, the doctor’s visit3 can be very brief. If the patient has a specific problem, then this encounter is stretched out more, and then also depends on the professional you are seeing, not everyone is the same, and some people are not only concerned to see how well you are doing on antiretroviral therapy, CD4 and viral load, but also care about their patients’ overall situation. “How are you doing? How’s your work? Do you have any problems?” (Dr. P)


EXPLAINING THE ABSENCE: PERSONAL INFORMATION IN DOCTOR–PATIENT TRANSACTIONS In visits that I observed, the opportunities for speaking of matters that could be deemed personal were numerous, but always touched on the medical management of the infection. How doctors and patients managed the exchanges of personal and medically relevant information is a pivotal element in the doctor’s legitimacy, central to the formative dimensions of doctor–patient encounters, not always acknowledged: the way the ‘patient with HIV’ and ‘person with HIV’ is forged as a social role and as a specific subjectivity (Villaamil and Jociles 2013). A closer look at the exchanges in the visits that I observed suggest that a formative frame of asymmetrical relations is compatible with gathering considerable personal information from and about the patient. Before the patient entered the consultation room, the doctor had a folder ready with the blood tests prescribed at the last visit, usually months before, and which the patient would have had done in the immediately preceding weeks. These tests included, at the very least, a CD4 count and viral load; in many cases the distribution of body fat and indicators such as cholesterol, sugar, iron, and vitamins were also tested. The folder also included the pharmacy report, which informed the doctor whether the patient had collected the medication he or she was due, although I never saw the doctor refer to this report. The interaction followed a rather regular structure: it started with a broad question, such as “How have you been since your last visit?” From that moment, the patient offered a mix of personal information (“Well, cheerful”; “A bit depressed”; “Fed up at work”) and physical information (“feverish”; “A bit thinner”; “I’ve been having headaches, I think related to stress”). The doctor would then look through the blood test results, taking special care to involve the patient in the process: turning the results page to the other side, marking with a pen all the relevant figures, and making ad hoc graphics for more complex explanations, for instance, if it was necessary to change medication. Systematically, the doctor would take their blood pressure and check their weight. He would use somewhat old fashioned equipment, a blood pressure monitor with an adjustable rubber cuff, and manual scales, which required a certain physical proximity and a slowness in the use of time that the doctor did nothing to avoid. After this, he would ask explicitly and systematically about medication: at the very least, how the patient was getting on with it and if he or she was having any trouble taking it. These consultations occurred only at six, sometimes 12 month, intervals. From the initial enquiry and the ensuing comments and questions about the test results and the problems (or lack thereof) related to medication, the patients would pose questions that were not strictly medical, but always were framed as medical. For instance, in one case in which the blood pressure results were high, the patient stated that he was stressed at work and that he had been very nervous for a while. He gave a little account of this, which the doctor did not interrupt. When he had finished, the doctor explained that blood pressure is not related to being


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nervous, and then offered a long, clear lay explanation of high blood pressure. He answered some questions posed by the patient, and then prescribed medication and offered some recommendations regarding diet and exercise. As the doctor stated in his interview, he handled a great deal of personal information about his patients. However, that information was gathered in an unsystematic, unconnected way—patients made statements about problems, but their relevance was determined from a medical point of view. We can ask about the effect of this kind of exchange from the patients’ point of view. A doctor’s attentiveness is one of the most valued aspects of the relationship from the patient’s perspective (Ong et al. 1996). But given the centrality of HIV management in the doctor–patient relationship, it was also a source of tension. Patients who have had conflicts related to the treatment have learned the hard way that there are limits to their agency with regard to treatment, and in the end, it is a question of authority—patients who disagree with any aspect of the diagnosis or their treatment have one option: to change their doctor. Ultimately, both in the small everyday interactions during a visit and in the case of open conflict, there is an implicit logic in practice, related to the asymmetry of the respective knowledges of doctors and patients. That practical logic does not consist in negating the knowledges of the patient but rather in each party acknowledging their corresponding place. It does not exclude intimacy and care (Mol 2008), although it posits them in an asymmetric frame (Waitzkin 1991). This general context shaping exchanges during visits is where I attempt to frame the following discussion about the existing silence regarding sex, as a way of organizing the relationships of knowledge and authority. Wood and Lambert have argued (2008) that silence around sex reflects preexisting patterns of response to delicate matters. Doctors often feel uncomfortable dealing with issues regarding patients’ intimate lives. This is the experience of some of our interviewees, as we will see next. Nevertheless, the limits of intimacy are not given but are imposed, and sometimes contested and negotiated, thus not merely reflecting but also articulating relations of power and authority (Warner and Berlant 1998). If the silence around sex reinforces previously existing patterns of response, the reverse is also true: keeping silent about the petty details of sexual relationships and affective attachments might reflect constructions of what constitutes knowledge and authority in the specific deployment of positive prevention as a technology.

CONCERTED DISCOMFORT: THE PATIENTS For most people with HIV interviewed, the lack of reference to sexual practices was not a problem: the representation of what was appropriate in doctor–patient encounters in their view did not differ fundamentally from the clinicians’ view. Most patients incorporated this central element of the framing of the doctor–patient encounter—the agreement on what counts as health and disease, their position in doctor–patient encounters, and the exclusions, silences, and invisibilities that are implicitly inscribed in the practice as a social setting. As noted, interviewees who expressed disagreement with doctors in this respect are scarce (Barry et al. 2000). I consider this agreement a common sense concordance with biomedical definitions of the situation that give an unproblematic appearance to what is a result of a formative/transformative process (Pizza 2005), as clearly manifested in the ‘negative’ cases—involving 7 of the 30 participants—where this common sense was not unproblematically accepted and the formative


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process failed. This was partly the intentional result of our sampling procedures (see previous), and was not necessarily representative. All seven interviewees had had at least 15 years with HIV therapy, and had long been exposed to activist critical discourses on medicine, either through very active involvement in NGOs or, in one case, as a patient in a community-based health center in the United States. The following quote is exceptional as far as the difficulties in discussing sexuality in doctor–patient encounters are thematized:


I came to the determination not to talk about this [sexual issues] with the doctors. Two or three times I tried to broach the subject but it seems to make them uncomfortable, you notice that they are uneasy, and I’ve had opportunities to gather information through other means, I prefer to make it simpler, more natural . . . if you see the person is already, well, embarrassed . . . because it’s hard for you [to talk about] any particular practice . . . to bring up questions. (Alfonso)

Fede agreed that doctors prefer not to address issues that bother them, but spontaneously recalled a situation when addressing his sexuality was necessary because the problem at issue was an absence of libido as a side effect of medication: They generally don’t ask anything, don’t ask about living conditions. In my case, for example, with my doctor, he avoided by all means talking about sexuality. . . . The normal thing would be to ask you how are you doing, if you get an erection, if it has been improving . . . but erm, he won’t ever mention that point, he doesn’t even touch on it. (Fede)

Fede problematized the absence of addressing his sexuality in doctor–patient encounters in a way that I find highly significant: he seems to have accepted as natural the way the exchanges of information usually took place with his doctor—and what he seems to miss is being able to talk with his doctor about strictly medical problems the way he is used to (“the normal thing . . . ”). Given that these problems are related to sexuality, within the framework of a normal interaction in a visit, the doctor should feel the need to talk about issues related to Fede’s intimacy. The issue here is not about prevention. But according to Fede, he was not able to overcome the doctor’s reluctance to talk about sex. Sometimes, respondents reported a complex set of expectations. Aurora, a former injecting drug user, was pregnant while undergoing methadone treatment, had an abortion on medical advice. She wondered whether she had received all the relevant information to make this decision. She thought that the doctor had proceeded with the abortion on the basis of prejudice about her way of life. In her view, this bias extended to her sexuality in general, but she made no effort to dispel it, as it would have been useless—or so it seemed to her: From the day I had an abortion, even more so since I became this wasted, he assumes I’m . . . [not having sex]. I can’t say it. If he thought of me as normal girl maybe he would ask himself or . . . “Got any problems?” But he doesn’t say anything, I think he assumes that I will not sleep with anyone. He is wrong, obviously. (Laughs). At the moment, yes.

Aurora has sexual relationships (invisible to the doctor and silenced by herself) with a partner who she met on a website (chat room) for people with HIV. They do not use condoms. Andrés, meanwhile, gives an explanation, at the interviewer’s request, of why his sexual practices never emerged in his encounters with his doctor after the first session, when he was asked about his

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practices, something he significantly interpreted as exclusively designed to place him in the right statistical category:


Well, as I said I am 75 years old. Sure, seven years ago [when he was diagnosed] I was younger than 75, I guess he thought there was no need to address risky practices, or sexual practices at all, for that matter. (Andrés)

Andrés raises again the ways that patients strategically disguise their sexuality. Like Aurora, he pretended to ignore the judgments based on stereotypes he suspects he is subjected to, calling into question the essential but elusive trust between doctor and patient. This illusion of trust is based on the patient’s interpretation of the physician’s expectations as he or she tries to accommodate to those very expectations. Because patients avoid questions of sex and sexuality, their doctor is very likely to have no clue that this might be an issue. Elisa made a similar point when she explained why she avoids giving the doctor information she knows he does not “want to hear.” She also has unprotected sex, in this case with a serodiscordant partner: Why? He [the doctor] is not going to believe . . . that he’s sleeping with me without a condom and has not been infected. He is not going to believe it, so, why would I tell him? (Laughs) Let him be happy, thinking whatever he wants. It’s because doctors don’t want to know certain things. They think . . . everything has to be straight and clear, and do not put the will of the person into the equation, do not take it into account. What are those things doctors do not want to know? Erm . . . anything that’s not . . . “scientific” [ironically].

Raul has a partner who has HIV. Since he was widowed, he has always chosen his sexual partners from women with HIV, and when he has a stable partner, as he had when interviewed, he does not use condoms. He knows “it is wrong,” but: “as I say, why would I say anything if they’re going to give me hell? . . . You take the risks because that is also something that has to do with your freedom” (Raul). However, the most common situation is that patients feel comfortable with this situation, and consider it perfectly acceptable that their doctors only talk about (safer) sex in the first encounter(s). They do not question the tone of scientific authority that doctors use to fill potential gaps of information. Transactions involving the person, his or her experience and his or her life contexts, are common, as noted previously. However, when it comes to preventing sexual transmission of HIV, there is what might be called a concerted discomfort: a concerted framework of implicit assumptions that tend to leave invisible a large part of the experience with sex and the moral experience of living with HIV—everything that cannot be expressed in medical terms. As I explore elsewhere (Villaamil 2013), however, people with HIV deal with everyday situations that involve sexual practices and quite complex medical knowledge—knowledge that goes far beyond basic information. Mol (2008) used the term tinkering to describe the task accomplished in a collaborative manner between the doctor and the patient of attuning all the heteroclite elements that come together in the process of treating a chronic disease in real life. To a certain degree, as we saw, Spanish patients can expect their doctors to support them in the task of dealing with treatment as long as they accept some limits to their agency. Along the way, as I discussed before, a great deal of information about patient’s life contexts is exchanged. Around sexuality, however, doctors perform their authority through a silence that inevitably reinforces the disciplining message


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delivered in the opening session: one that stresses infectiousness, individual responsibility, and types of intercourse. What is precisely silenced are not just the petty details of sexual relations but also the strategies people with HIV deploy to handle information when building meaningful relationships—or, as Kippax (2010) put it, patients do not find the chance to talk about behaviors or social practices. The agency of people with HIV is here deemed implicitly irrelevant. To challenge this silence would mean not only to question a particular doctor’s authority but the implicit moral economy—the presuppositions made about human beings (Rose 2006) that underpin the technology.


CONCLUSIONS This analysis has implications that might affect relationships between activists, public health experts, and health care providers that characterized the first decades of the epidemic in two senses. First, although the findings I discuss are related to the specifics of the organization of prevention and treatment in Madrid, the broader question of how policies—including the use of clinical consultations to carry out positive prevention—are implemented locally, are relevant beyond the Spanish setting. The context in which prevention with people who are positive is inserted determines the concrete form and value of preventive work. Taking this context into account is fundamental for the interpretation and qualification of positive prevention as technology. From a biopolitical stance, what is at stake in relationships between the actors implied in prevention technologies is how the lives of the people with HIV enter the sphere of public interest. Second, the usefulness of a unidirectional prevention model, based on an exclusively biological, technical narrative of transmission, needs to be examined. I have considered how authority and hierarchies of knowledges depend directly of this model. It is possible to support the argument that an effective PP intervention requires an open approach that “starts from the grounded experience of people who deal most directly with HIV risk” (Adam 2011:5), and that this approach is most likely to occur when medical settings are combined with spaces where the social and cultural mediation of information is possible (Kippax and Stephenson 2012). The uncritical assumption of the suitability of medical settings for positive prevention interventions, although based on a common sense conception of trust between doctors and patients, when combined with the defunding of community participation, is likely to reduce the efficacy and effectiveness of HIV prevention. In Spain, when the present economic crisis has called every priority into question, “lifeboat ethics” (Scheper Hughes 1993:405) now sits at the core of the integration of prevention in settings where treatment is provided. The biopolitical role of the state has been redefined to determine what is absolutely indispensable and what should be left to private interest or left alone. The political statement that prevention should be carried out by health structures should be understood as a cover of a political and ideological decision. The disappearance or increased precariousness of the spaces of autonomy for people with HIV will have profound effects on the future course of the epidemic; so too, in a broader sense, will the increasing relinquishment of spheres of public life to private management. NOTES 1. In 2012 its organizational structure was dismantled and staff were laid off.

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2. Stratégie de prévention de l’infection VIH/SIDA en France pour les années 2001–2004. Direction Generale de la Santé. Paris, 2001 3. This is a Spanish phrase, la visita del médico, meaning “flying visit,” a short and formal visit to a person with whom the visitor has no close acquaintance.


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