Pharmaceutical HIV prevention technologies in the UK: six domains for social science research

The development of pharmaceutical HIV prevention technologies (PPTs) over the last five years has generated intense interest from a range of stakeholders. There are concerns that these clinical and pharmaceutical interventions are proceeding with insufficient input of the social sciences. Hence key questions around implementation and evaluation remain unexplored whilst biomedical HIV prevention remains insufficiently critiqued or theorised from sociological as well as other social science perspectives. This paper presents the results of an expert symposium held in the UK to explore and build consensus on the role of the social sciences in researching and evaluating PPTs in this context. The symposium brought together UK social scientists from a variety of backgrounds. A position paper was produced and distributed in advance of the symposium and revised in the light this consultation phase. These exchanges and the emerging structure of this paper formed the basis for symposium panel presentations and break-out sessions. Recordings of all sessions were used to further refine the document which was also redrafted in light of ongoing comments from symposium participants. Six domains of enquiry for the social sciences were identified and discussed: self, identity and personal narrative; intimacy, risk and sex; communities, resistance and activism; systems, structures and institutions; economic considerations and analyses; and evaluation and outcomes. These are discussed in depth alongside overarching consensus points for social science research in this area as it moves forward

Testing public health intervention guidance on increasing the uptake of HIV testing among men who have sex with men. Final fieldwork report

This guidance is for NHS and other commissioners, managers and practitioners who have a direct or indirect role in, and responsibility for, increasing the uptake of HIV testing among men who have sex with men. This includes those working in local authorities and the wider public, private, voluntary and community sectors. It will also be of interest to members of the public, in particular men who have sex with men. The focus of the guidance is on increasing the uptake of HIV testing to reduce undiagnosed infection and prevent transmission. The recommendations include advice on: planning services, including assessing local need and developing a strategy promoting HIV testing among men who have sex with men, including outreach schemes and providing rapid point-of-care tests offering and recommending an HIV test in primary care, secondary care and specialist sexual health services repeat testing HIV referral pathways

Working class gay men: Redefining community, restoring identity

This report presents the full results of one of a suite of three studies investigating how a range of pre-existing social and cultural factors mediate the development of gay male identity and shape the many forms of gay male social life in London today. These studies aim to problematise monolithic and (we believe) unhelpful social categories such as ‘gay community’ or ‘gay scene’ and show how the population of gay men in London is riven with cultural, political and social differences. It is common to talk simplistically about ‘gay men’ or ‘the gay community’. Commentators have unsuccessfully attempted to undermine such simplistic concepts by asserting that these identities and communities are restricted to White, middle class men. However, we believe that this position on its own is unhelpful because it fails to articulate the broader impact of such sweeping terminology. It serves to obscure the myriad ways of being gay that are not currently being described or represented in health or social policy or interventions for gay men. It implicitly robs anyone who is not White and middle class of a gay identity and sociality. It therefore uses the rhetoric of exclusion to ensure that so-called excluded groups are never considered in mainstream health and social policy for gay men because they are somehow not ‘properly’ gay. In addition, it is reductionist in relation to White middle class gay men. It is always well to be suspicious of any notion of the ‘default’ group which is considered powerful, wealthy etc. Such groups are usually one of two things: an aspirational ‘brand’ created by marketeers to sell us certain lifestyles (a quick review of the commercial gay media supports this suspicion) or a conceptual construction which everyone else uses as a benchmark to establish their own ‘individuality’ or ‘difference’. In short, we are asserting that, in policy terms, the White middle class ‘mainstream’ gay community is a useful political fallacy. In short, our representations of gay men and gay sociality remain woefully impoverished and simplistic. There is one additional over-arching effect of the White middle class fallacy. That is, by speaking the language of inclusion and exclusion, we are condemned to always consider weakness as opposed to strength. There is an implicit assumption in nearly all research and policy work on gay men that to be within the charmed circle of the White middle classes is to be without need. Thus, other experiences of being gay and other groups of gay men are described as automatically disadvantaged and weaker. These three reports will show that there is no paradigmatic gay experience or group. Rather, there are myriad ways of being gay, all of which are imbued with strengths and weaknesses. To this end, we have conducted a suite of qualitative studies into gay men resident in London. One of the others examines the relationship between ethnic minority identity and gay identity and the other investigates the lives of gay migrants in London. This report examines the experiences of blue collar or working class gay men. We aim, with all these studies to change the way that health promoters and policy makers conceive of the gay male population. We want to challenge the construction of the gay male population as having a centre which is privileged – White and middle class – and a periphery of excluded ethnic minorities, migrants, bisexuals and working class men etc. Instead, we present a conception of the gay population of London as a composite of a range of different experiences. As fractured, antagonistic and constantly changing. Moreover, the factors which fracture that population, which create the flux and antagonisms are larger social and structural factors such as ethnicity, religion, education, class, income etc. To put it simply, no gay man is simply gay, he probably also has a class background, an ethnicity, a job, a family, and a religious affiliation or history among other things. It is these differences that animate the gay population of London. Therefore, in all these reports we talk about things rarely considered in policy-oriented research on gay men. We talk of the importance of biological family and heterosexual forms of sociality for many gay men. We talk of the centrality of spirituality and organised religion. We talk about education and the passage from school to work. We talk about masculinity and health. We talk about nationalism. We talk very little about HIV and AIDS and sexual health. We have a transparent aim in doing so. We are hoping to take gay men’s health and social concerns out of the service and policy ‘ghetto’ that is HIV. We are reasserting a particularly sociological perspective that gay men’s health (sexual and otherwise) and the HIV epidemic are fundamentally influenced by broader social factors. In short, if we were to recommend one practice outcome as a result of these studies it would be to produce less community interventions telling gay men what to do (or how to be). Rather, we should be seeking to transform the education of all boys and to increase the capacity of all families to live with and enjoy their gay children; of all services to meet the needs of their gay users and of all communities to capitalise on the presence of their gay members. This is not as socially transformative an agenda as it sounds. We have much to learn from the experiences of working class gay men, gay men from ethnic minorities and gay migrants. Such interventions are, properly speaking, HIV health promotion

Ethnic minority gay men: Redefining community, restoring identity

This report presents the results of one of three studies investigating how social and cultural factors shape gay male identity and influence gay male social life in London today (see also Keogh, Dodds, Henderson 2004a; Keogh, Dodds, Henderson 2004b). These studies aim to problematise monolithic and (we believe) unhelpful concepts such as ‘gay community’ or ‘gay scene’ and show how the population of gay men in London is riven with cultural, political and social differences. It has often been said that ‘the gay community’ or the ‘gay scene’ is an essentially White, middle-class concept which excludes men from other classes or ethnic backgrounds. This research shows that this is not the case. Numerically, the population of gay men in London is disproportionately White and mainly British (as is the population of London), but it is also as multi-ethnic and multi-cultural as the broader London population. Although we regularly celebrate the multi-culturalism of the capital, we rarely, if ever describe the gay community in this way. This is unfortunate because the many facets of the gay community which should otherwise be acknowledged or represented in health or social policy for gay men are obscured. As a consequence, social and community services for gay men remain woefully impoverished. Moreover, by speaking the language of exclusion, we are condemned to always consider weakness as opposed to strength. There is an implicit assumption in nearly all research and policy work on gay men that to be within the charmed (White, middle-class) circle of the gay community is to be ‘included’ and therefore without need. It follows that, those outside of it are automatically ‘excluded’ and therefore, disadvantaged, weaker or more needy. These three reports will show that there is no paradigmatic gay experience or group. Rather, there are many ways of being gay, all of which are imbued with strengths as well as weaknesses. The three reports which emerge from this collection of studies can each stand alone, but are best read in relation to one other. One examines the relationship between being less well-educated, working class and having a gay identity. Another examines the experiences of gay adult migrants to London. This report investigates ethnic minority identity and gay identity specifically concentrating on the experience of British-born Black Carribean men and White Irish immigrants to London. Our aim in carrying out these studies is to change the way that health promoters and policy makers conceive of the gay male population. We want to replace the dominant ‘centre vs. periphery’ construction with a conception of the gay population of London as a composite of a range of different experiences; as fractured, antagonistic and constantly changing. Moreover, the factors which account for these differences amongst gay men are larger social and structural factors: ethnicity, religion, education, class, income etc. To put it simply, no gay man is simply gay, he also has a class background, an ethnicity, an employment history, a family and probably a religious affiliation. On a policy level, we hope to take gay men’s health and social concerns out of the policy ‘ghetto’ that is HIV. Gay and HIV community organisations should be broadening their policy objectives. We feel they should be seeking to transform the education of all boys as well as increasing the capacity of all families to live with and enjoy their gay children. We feel they should be challenging all services to meet the needs of their gay users and of all communities to capitalise on the presence of their gay members. In seeking to do this, we can all learn from the experiences of gay men from ethnic minorities, gay adult migrants and working class gay men

Morality, responsibility and risk: Gay men and proximity to HIV. London

Network analysis and network theory have emerged in various strands of research on HIV. Epidemiological research has used network analysis to map and predict the course of the HIV and STI epidemics among Gay men (Doherty et al. 2005; Piqueira et al. 2004). It constitutes an advance on cruder epidemiological models of random mixing (see Keeling & Eames 2005). Social network analysis and social attachment have been important concepts in informing more recent HIV prevention interventions (see Fernandez et al. 2003; Latkin and Knowlton 2005) and have had specific applications in the case of disadvantaged communities such as injecting drug users and sex workers (Latkin et al. 2003; Rhodes et al. 2005). Moreover, network analysis has been useful in understanding social support of disadvantaged groups living with HIV such as African migrants and ethnic minority women (Hough et al. 2005; Asander et al. 2004; Sivaram et al. 2005). Considering a Gay man as part of a social network involves engaging with the social and cultural factors that shape his experience. Rather than thinking of his relationships as essentially random, we characterise them as being profoundly influenced by his social environment; an environment made up by other individuals who share common understandings and social norms. This social network is generally self-perpetuating and limited. Individuals come into contact and hence derive friends and partners from this finite network. Network analysis is especially valuable when examining a population that is highly heterogeneous and made up of individuals who enter that population as autonomous adults. Gay men are such a population being made up of socially mobile individuals deriving from a range of social, ethnic and geographical backgrounds. Social networks are central to our understanding of the dynamics of HIV risk among Gay men. The nature and density of social networks have been found to be connected to sexual risk practices and susceptibility to HIV infection in Gay men (Smith et al. 2004). Moreover, networks influence Gay men’s perceptions and understandings of the HIV epidemic (Grierson 2005). In addition, social networks may have a role in influencing an individuals’ knowledge and understandings of, and access to new technologies such as PEP (see Dodds & Hammond 2006; Korner et al. 2005). Social norms have been found to be important in influencing Gay men’s attitudes towards safer sex and risk-taking especially among groups that have been traditionally disempowered or marginalised such as young Gay men (see Amirkhanian et al. 2005a) and Black/ethnic minority Gay men (see Wilson et al. 2002; Peterson et al. 2003; Zea et al. 2005). Finally social network analysis has been useful in describing social support for Gay men living with HIV and their carers (Shippy et al. 2003; White and Cant 2003; Cant 2004; Zea et al. 2005). A range of HIV prevention interventions have been based around social networks and innovation diffusion theory (see Amirkhanian et al. 2005a). Such interventions would seem to have most salience with disadvantaged groups of Gay and Bisexual men and have achieved some success (see Amirkhanian et al. 2005b). Other authors point out the limitations of network interventions in reaching men at relatively low risk or stress limitations in their efficacy over time (see Martin et al. 2003). Findings from the 2003 Gay Men’s Sex Survey (GMSS) highlight the importance of proximity to HIV. That is, men in certain social and cultural networks had limited experience of HIV in their social network and these men tended to have greater HIV prevention need (see Reid et al. 2004). GMSS 2003 established a range of indicators to measure personal and social proximity to the epidemic. These included: • Having tested for HIV. • Not having tested positive, but believing you are or could be infected. • Being in or having had a sero-discordant relationship. • Personally knowing someone with HIV. At the population level proximity to HIV was mediated by a range of demographic factors. • Area of residence: Men resident in London had greater proximity than men resident elsewhere, although men with low proximity to HIV were present in every city and town and in every area of the UK. • Age: Men in their 30's and 40's had greater proximity than either older or younger men. • Ethnicity: Black men and White men of ethnicities other than British had greater proximity than men in other ethnic groups. • Education: Better educated men had greater proximity (even though less well educated men were more likely to have HIV). • Income: Men in higher income brackets had greater proximity than men in lower income brackets. • Gender of sexual partners: Exclusively homosexually active men had greater proximity to HIV than men who were behaviourally bisexual. • Numbers of male partners: Men with greater numbers of partners had greater proximity than men with fewer partners. While these differences are important it is essential to note that they denote difference at the population level. In fact, there are men with low proximity to HIV in every city and town in the UK (including London); in every age group and ethnic group; with every level of formal education and at every income level; and with a range of sexual identities and sexual practices. These population differences in proximity to HIV present an interesting health promotion dilemma. Those men with greatest proximity have less unmet needs but are more likely to be involved in HIV exposure. Those with less proximity have the greatest unmet need and will therefore be vulnerable if they do come into contact with HIV (either knowingly or unknowingly) but they are probably less likely to do so. In response, the original research recommends “a diverse portfolio of interventions that are encountered by men with a wide variety of relationships to HIV” (Reid et al. 2004). The study presented in this report is in response to these findings. That is, a qualitative examination of social proximity to the epidemic among Gay men. However, we must start with a caveat. Neither GMSS nor this study measures actual proximity to HIV, that is the numbers of social and sexual contacts an individual has who are actually HIV positive, or the percentages of a social network who are actually positive. Rather, GMSS sets up a range of proxy markers to indicate proximity (such as testing history, beliefs about one’s own status and beliefs about the HIV status of social and sexual partners). Likewise, this study measures perceptions of proximity to the epidemic rather than actual proximity (to study actual proximity would require an ambitious network analysis where we recruited all the social and sexual contacts of respondents and asked them about their actual or known HIV status). Studying men’s perceptions of their proximity to the epidemic allows us to examine the ways in which men’s perceptions of their social surroundings influence how they experience and negotiate sexual risk. Moreover, an individual’s perception of the world around him influences the types of information and messages he is likely to notice. The purpose of this study is to inform the nature of interventions targeting men based on their perceived proximity to the epidemic. We will do so by exploring how their perceptions of proximity influence management of HIV-related sexual risk among men who assume or know themselves to be HIV negative

Relative Safety 2: Risk and unprotected anal intercourse among gay men diagnosed with HIV

In 1999 Sigma Research published Relative safety: an investigation of risk and unprotected anal intercourse among gay men diagnosed with HIV (Keogh et al. 1999). This study explored the social, psychological and cultural meanings associated with unprotected anal intercourse (UAI) among men with diagnosed HIV. It highlighted both the complexity of sexual interaction for men with diagnosed HIV, and the many potential costs and benefits perceived by them. Now, with more than 24,000 homosexually active men diagnosed with HIV in the UK (Health Protection Agency 2008), a figure that is set to increase in years to come, it is vital that agencies involved in HIV prevention interrogate their own beliefs about UAI and ensure that their interventions meet the needs of men with diagnosed HIV. . . . . The following chapter explains how the study was undertaken, outlines the broad topic areas addressed during the interviews, and describes the sample of men who took part. Chapter 3 outlines the range of harms that men with HIV perceive when engaging in UAI. Chapters 4 and 5 explore the ways in which men responded to these perceived harms, firstly those relating to the risk of onward HIV infection, or superinfection, and latterly those concerning the potential for harms to their personal and social identities. Chapter 6 considers the implications of these findings for health promotion interventions targeting men with HIV, and with homosexually active men more broadly

Responsibility and HIV/AIDS: a sociological investigation

This thesis offers an analysis of how conceptions of responsibility have affected social responses to HIV/AIDS. The central premise of this work is that how responsibility for the disease is presumed has a determining impact upon policy and individual reactions to the epidemic. This in turn influence the spread of the disease. This thesis also addresses how AIDS and its associated meanings provides and necessitates new ways of understanding social relations of responsibility. I begin with a theoretical exploration of dominant perspectives on responsibility through the development of two analytical categories: responsibility as freedom and responsibility as control. The first of these represents those approaches to responsibility that regard it as the condition that makes individual freedom possible. The second views all notions of responsibility as an inherently restrictive means of individual self-disciplining which only serves to protect the status-quo. In the successive case studies on health promotion materials, I-IIV testing policy and the criminalisation of HIV transmission, I develop a detailed analysis of the embeddedness of individual responsibility as promoted by the responsibility as freedom model, and of the accompanying critiques of those individualised approaches that some from the responsibility as control model. I then explore and alternative form of apprehending responsibility that transcends this abrupt dichotomy between freedom and control. Using the example of the 1 3th International AIDS Conference at Durban, I elaborate an intersubjective model of responsibility. In this framework, I propose an understanding of responsibility founded on social relations and the interconnectedness of social actors. This position also acknowledges the political struggles inevitably involved in attempts to bring about change, struggles which involve individuals, civil society, organisations and states

The knowledge, the will and the power : a plan of action to meet the HIV prevention needs of Africans living in England

The Knowledge, The Will and The Power is a statement of what we, the NAHIP Partners, plan to do to prevent HIV transmissions occurring during sexual activity among the diverse population of Africans living in England (Chapter 1). We describe the size and context of Africans living in England (Chapter 2), the size of the HIV epidemic and the number of new infections occurring (Chapter 3), as well as the behaviours and facilitators of new infections (Chapter 4). We then articulate how the NAHIP partners intend to influence future behaviours (Chapter 5). The final three chapters describe what is required in order to meet the HIV prevention needs of individual African people (Chapter 6), of NAHIP partner organisations (Chapter 7) and of those undertaking decisions related to policy, planning and research (Chapter 8)

Tempering hope with Intimate Knowledge: contrasting emergences of the concept ‘uninfectious’ in HIV

In this paper, we contrast two emergences of the concept of ‘uninfectious’ (that pharmaceuticals can render someone living with HIV non‐infectious) in HIV. First, using Novas’ framing of ‘political economies of hope’, we describe the deployment of ‘uninfectious’ as part of global health campaigns. Second, we draw on Raffles’ (International Social Science Journal, 2002, 54, 325) concept of ‘intimate knowledge’ to theorise our own account of ‘uninfectious’ through a re‐analysis of qualitative data comprising the intimate experiences of people living with or around HIV collected at various points over the last 25 years. Framed as intimate knowledge, ‘uninfectious’ becomes known through people’s multiple engagements with and developing understandings of HIV over a prolonged period. As contingent and specific, intimate knowledge does not register within the biomedical/scientific ontological system that underpins discourses of hope employed in global campaigns. The concept of intimate knowledge offers the potential to critique discourses of hope in biomedicine problematising claims to universality whilst enriching biomedical understandings with accounts of affective, embodied experience. Intimate knowledge may also provide a bridge between different epistemological traditions in the sociology of health and illness