Social Aspects of HIV – serie

This book tells the story of the HIV epidemic in South Africa, and asks why, after more than three decades, it has not normalised. Despite considerable efforts to prevent infection, and ambitious targets set to end the epidemic by 2030, HIV infections are increasing among young women and treatment uptake and adherence have been uneven. Focusing on the years preceding and following treatment access, this book addresses why an end to AIDS may be misplaced optimism. By examining public discourses and private narratives about infection, illness and death, this work reveals the contradictions between the lived experiences of AIDS suffering on the one hand, and biomedical certainties on the other. Based on long-term ethnographic research in rural villages of the South African lowveld, and within HIV prevention interventions in South Africa more generally, this book offers an intimate perspective on the social and cultural responses to the epidemic.

This book tells the story of the HIV epidemic in South Africa, and asks why, after more than three decades, it has not normalised. Despite considerable efforts to prevent infection, and ambitious targets set to end the epidemic by 2030, HIV infections are increasing among young women and treatment uptake and adherence have been uneven. Focusing on the years preceding and following treatment access, this book addresses why an end to AIDS may be misplaced optimism. By examining public discourses and private narratives about infection, illness and death, this work reveals the contradictions between the lived experiences of AIDS suffering on the one hand, and biomedical certainties on the other. Based on long-term ethnographic research in rural villages of the South African lowveld, and within HIV prevention interventions in South Africa more generally, this book offers an intimate perspective on the social and cultural responses to the epidemic.

This edited collection brings together the social dimensions of three key aspects of recent biomedical advance in HIV research: Treatment as Prevention (TasP), new technologies such as Pre-Exposure Prophylaxis (PrEP), and the Undetectable equals Untransmittable (U=U) movement. The growth of new forms of biomedical HIV prevention has created hope for the future, signalling the possibility of a world without AIDS. In this context, the volume discusses the profound social, political and ethical dilemmas raised by such advances, which are to do with readiness, access, equity and availability. It examines how HIV prevention has been, and is, re-framed in policy, practice and research, and asks: How best can new biomedical technologies be made available in a profoundly unequal world? What new understandings of responsibility and risk will emerge as HIV becomes a more manageable condition? What new forms of blame will emerge in a context where the technologies to prevent HIV exist, but arenot always used? How best can we balance public health’s concern for adherence and compliance with the rights of individuals to decide on what is best for themselves and others? Few of these questions have thus far received serious consideration in the academic literature.The editors, all leaders in the social aspects of HIV, have brought together an innovative and international collection of essays by top thinkers and practitioners in the field of HIV. This book is an important resource for academics and professionals interested in HIV research.Chapters "Anticipating Policy, Orienting Services, Celebrating Provision: Reflecting on Scotland’s PrEP Journey", "How the science of HIV treatment-as-prevention restructured PEPFAR’s strategy: The case for scaling up ART in ‘epidemic control’ countries", "Stigma and confidentiality indiscretions: Intersecting obstacles to the delivery of Pre-Exposure Prophylaxis to adolescent girls and young women in east Zimbabwe" and "The drive to take an HIV test in rural Uganda: a risk to prevention for young people?" are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.

This edited collection brings together the social dimensions of three key aspects of recent biomedical advance in HIV research: Treatment as Prevention (TasP), new technologies such as Pre-Exposure Prophylaxis (PrEP), and the Undetectable equals Untransmittable (U=U) movement. The growth of new forms of biomedical HIV prevention has created hope for the future, signalling the possibility of a world without AIDS. In this context, the volume discusses the profound social, political and ethical dilemmas raised by such advances, which are to do with readiness, access, equity and availability. It examines how HIV prevention has been, and is, re-framed in policy, practice and research, and asks: How best can new biomedical technologies be made available in a profoundly unequal world? What new understandings of responsibility and risk will emerge as HIV becomes a more manageable condition? What new forms of blame will emerge in a context where the technologies to prevent HIV exist, but arenot always used? How best can we balance public health’s concern for adherence and compliance with the rights of individuals to decide on what is best for themselves and others? Few of these questions have thus far received serious consideration in the academic literature.The editors, all leaders in the social aspects of HIV, have brought together an innovative and international collection of essays by top thinkers and practitioners in the field of HIV. This book is an important resource for academics and professionals interested in HIV research.Chapters "Anticipating Policy, Orienting Services, Celebrating Provision: Reflecting on Scotland’s PrEP Journey", "How the science of HIV treatment-as-prevention restructured PEPFAR’s strategy: The case for scaling up ART in ‘epidemic control’ countries", "Stigma and confidentiality indiscretions: Intersecting obstacles to the delivery of Pre-Exposure Prophylaxis to adolescent girls and young women in east Zimbabwe" and "The drive to take an HIV test in rural Uganda: a risk to prevention for young people?" are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.

This book addresses the impact of HIV on populations of men who have sex with men in Africa and local responses to the issue. It documents the enduring existence of a rich variety of same-sex practices between men. More critically, it analyses how the denial and social rejection of same-sex sexuality, together with the legacy of criminalization by former colonial rulers, has not only fueled the transmission of HIV between men, but has also impeded an effective response. The book also documents some of the outstanding progress that has been made and acknowledges the differences between African countries. Through its focus on lived realities and grassroots activism in Africa, this book will appeal to researchers, policy makers and practitioners alike.

This book addresses the impact of HIV on populations of men who have sex with men in Africa and local responses to the issue. It documents the enduring existence of a rich variety of same-sex practices between men. More critically, it analyses how the denial and social rejection of same-sex sexuality, together with the legacy of criminalization by former colonial rulers, has not only fueled the transmission of HIV between men, but has also impeded an effective response. The book also documents some of the outstanding progress that has been made and acknowledges the differences between African countries. Through its focus on lived realities and grassroots activism in Africa, this book will appeal to researchers, policy makers and practitioners alike.

This book, written decades into the HIV epidemic, reflects critically on the idea that the socially excluded populations often focused on in HIV research are in fact difficult to access and reach. The author broadly applies the concept ‘hard to reach’ to characterize populations that researchers find difficult to engage with. Social factors that produce marginalization and ultimately result in people choosing not to engage in research are not captured by the concept of ‘hard to reach’. Limited attention has focused on how researchers can address the social factors that result in decisions to not engage in research. Disrupting the ways in which people are conceptualized as ‘hard to reach’ so as to refocus on transforming social systems and personal values, beliefs and approaches is understudied. This book uses case examples based on HIV research with Indigenous youth, internally displaced women, LGBTQ communities in the Global North and Global South, and persons at the intersection of these identities, to identify successful approaches to working with marginalized and often vulnerable communities and groups. The chapters signal the need for attention to five key social factors when developing successful approaches: context and storytelling; cultural humility; critical hope; imagination and possibility; and love, intimate inquiry, and the beloved community, if nations, individuals and communities are to address the epidemic in a sustainable and impactful way.

This book, written decades into the HIV epidemic, reflects critically on the idea that the socially excluded populations often focused on in HIV research are in fact difficult to access and reach. The author broadly applies the concept ‘hard to reach’ to characterize populations that researchers find difficult to engage with. Social factors that produce marginalization and ultimately result in people choosing not to engage in research are not captured by the concept of ‘hard to reach’. Limited attention has focused on how researchers can address the social factors that result in decisions to not engage in research. Disrupting the ways in which people are conceptualized as ‘hard to reach’ so as to refocus on transforming social systems and personal values, beliefs and approaches is understudied. This book uses case examples based on HIV research with Indigenous youth, internally displaced women, LGBTQ communities in the Global North and Global South, and persons at the intersection of these identities, to identify successful approaches to working with marginalized and often vulnerable communities and groups. The chapters signal the need for attention to five key social factors when developing successful approaches: context and storytelling; cultural humility; critical hope; imagination and possibility; and love, intimate inquiry, and the beloved community, if nations, individuals and communities are to address the epidemic in a sustainable and impactful way.

This book critically examines the many complex entanglements between AIDS activism and HIV science. It takes readers on a medical anthropological expedition across time and space that highlights the stakes from the perspective of those most affected by the epidemic. Author Robert Lorway reveals how early in the HIV epidemic, amid inadequate government leadership, communities of people living with and directly affected by HIV and AIDS rose to become a vital force at the forefront of prevention responses. Yet now, more than three decades later, HIV prevention and treatment is increasingly being placed under the jurisdiction of clinical, epidemiological, and management scientific expertise. In this kind of context, where does activism figure into the possibility of more democratized collaborations between affected communities, scientists, and policy makers? Coverage draws upon the findings from an array of community research projects conducted in Canada, India, and Kenya over a 22-year period. It weaves together rich, original data sources that range from in-depth qualitative interviews, field notes, and primary and secondary archival document retrievals in these three regions. Offering a rich diversity in perspectives, this book tackles the broader themes related to global health policy, science, and transnational activism at the same time as it highlights the experiences and local arenas where debates about activism and science play out. In the end, Lorway questions the growing expectation for affected communities themselves to produce sound evidence to legitimize their advocacy projects. He calls for the planners and implementers of biomedically oriented HIV research and interventions to more meaningfully engage with communities in ways that de-monopolize decision making as a matter of ethics and improved scientific practice.

This edited volume presents a detailed portrait of couples living with mixed HIV status, where one partner is HIV-positive and the other negative. Readers will come to understand the various and complex ways in which these mixed-status, or serodiscordant couples build a life together within the shadow of HIV-related stigma. Spanning the globe, coverage explores serodiscordance as a negotiated practice and process, inseparable from the social context in which it is situated. The book shows how couples draw on diverse and sometimes contradictory cultural discourses of medicine, romance, and “normality” to make sense of and manage their mixed HIV status and any perceived risks, not uncommonly in ways that depart from prevailing HIV prevention messages. Throughout, compelling personal stories accompany the empirical research, sharing the firsthand experiences of men and women in serodiscordant relationships. Bringing together research from diverse disciplines and geographical regions, this book contributes important insights for future HIV health promotion as well as offers new knowledge to scholarship on the cultural intersections of illness and intimacy. It will appeal to a broad audience working across the fields of HIV, health, gender, sexuality, development, and human rights.

This timely book looks critically at the policy response to AIDS and its institutionalization over time. It raises important questions about who benefits, who decides, and in whose interests decisions are made. Taking the early international response to the epidemic as its starting point, and focusing on the work of agencies such as UNAIDS, it identifies two logics underpinning strategy to date. First, the idea of HIV as a ‘global emergency’ which calls for an extraordinary response.  Second, the claim that medicine offers the best way of dealing with it. The book also identified the rise of something more dominant – namely Global AIDS – or the logic and system that seeks to displace all others. Promulgated by UNAIDS and its partner agencies, Global AIDS claims to speak the truth on behalf of affected persons and communities everywhere.  Founded on solidarity claims concerning the international HIV movement, and distinctive knowledge practices which determine what needs to be done. Alternative views about the nature of the epidemic or the best response are rejected as irrelevant for falling outside the master framing of the epidemic that Global AIDS provides. But to what extent is this biomedical and emergency framing of the epidemic sustainable, and to what extent does it speak to the sustainability of lives as affected people wish them to be lived?  Does scientific and biomedical advance provide all the answers, or do important social and political issues need to be addressed?  This book provides an innovative framework with which to think about these and other sustainability challenges for the future.

This book examines the structural dynamics of HIV among populations at heightened vulnerability to infection as the result of stigma, discrimination and marginalization. It first examines how the socio-structural context shapes HIV risk and how affected populations and national governments and programs have responded to these structural constraints.  Chapters focus on structural determinants of HIV risk among transgender women in Guatemala, migrant workers in Mexico, Nigeria and Vietnam, and people who inject drugs in Tanzania. Next, the book examines resilience and community empowerment and mobilization among key populations such as female sex workers in the Dominican Republic and India, and young women and girls in Botswana, Malawi and Mozambique. A third set of chapters explores how national responses to HIV have addressed the role of structural factors in diverse political, geographic and epidemic settings including: Brazil, South Africa, Ukraine and the USA. Ultimately, effectiveand sustainable responses to HIV among marginalized groups must be grounded in an in-depth understanding of the factors that create vulnerability and risk and impede access to services. Throughout, this book brings together a rigorous social science research perspective with a strong rights-based approach to inform improvements in HIV programs and policies. It offers new insights into how to better address HIV and the health and human rights of historically excluded communities and groups.

This book critically examines the many complex entanglements between AIDS activism and HIV science. It takes readers on a medical anthropological expedition across time and space that highlights the stakes from the perspective of those most affected by the epidemic. Author Robert Lorway reveals how early in the HIV epidemic, amid inadequate government leadership, communities of people living with and directly affected by HIV and AIDS rose to become a vital force at the forefront of prevention responses. Yet now, more than three decades later, HIV prevention and treatment is increasingly being placed under the jurisdiction of clinical, epidemiological, and management scientific expertise. In this kind of context, where does activism figure into the possibility of more democratized collaborations between affected communities, scientists, and policy makers? Coverage draws upon the findings from an array of community research projects conducted in Canada, India, and Kenya over a 22-year period. It weaves together rich, original data sources that range from in-depth qualitative interviews, field notes, and primary and secondary archival document retrievals in these three regions. Offering a rich diversity in perspectives, this book tackles the broader themes related to global health policy, science, and transnational activism at the same time as it highlights the experiences and local arenas where debates about activism and science play out. In the end, Lorway questions the growing expectation for affected communities themselves to produce sound evidence to legitimize their advocacy projects. He calls for the planners and implementers of biomedically oriented HIV research and interventions to more meaningfully engage with communities in ways that de-monopolize decision making as a matter of ethics and improved scientific practice.

This edited volume presents a detailed portrait of couples living with mixed HIV status, where one partner is HIV-positive and the other negative. Readers will come to understand the various and complex ways in which these mixed-status, or serodiscordant couples build a life together within the shadow of HIV-related stigma. Spanning the globe, coverage explores serodiscordance as a negotiated practice and process, inseparable from the social context in which it is situated. The book shows how couples draw on diverse and sometimes contradictory cultural discourses of medicine, romance, and “normality” to make sense of and manage their mixed HIV status and any perceived risks, not uncommonly in ways that depart from prevailing HIV prevention messages. Throughout, compelling personal stories accompany the empirical research, sharing the firsthand experiences of men and women in serodiscordant relationships. Bringing together research from diverse disciplines and geographical regions, this book contributes important insights for future HIV health promotion as well as offers new knowledge to scholarship on the cultural intersections of illness and intimacy. It will appeal to a broad audience working across the fields of HIV, health, gender, sexuality, development, and human rights.

This timely book looks critically at the policy response to AIDS and its institutionalization over time. It raises important questions about who benefits, who decides, and in whose interests decisions are made. Taking the early international response to the epidemic as its starting point, and focusing on the work of agencies such as UNAIDS, it identifies two logics underpinning strategy to date. First, the idea of HIV as a ‘global emergency’ which calls for an extraordinary response.  Second, the claim that medicine offers the best way of dealing with it. The book also identified the rise of something more dominant – namely Global AIDS – or the logic and system that seeks to displace all others. Promulgated by UNAIDS and its partner agencies, Global AIDS claims to speak the truth on behalf of affected persons and communities everywhere.  Founded on solidarity claims concerning the international HIV movement, and distinctive knowledge practices which determine what needs to be done. Alternative views about the nature of the epidemic or the best response are rejected as irrelevant for falling outside the master framing of the epidemic that Global AIDS provides. But to what extent is this biomedical and emergency framing of the epidemic sustainable, and to what extent does it speak to the sustainability of lives as affected people wish them to be lived?  Does scientific and biomedical advance provide all the answers, or do important social and political issues need to be addressed?  This book provides an innovative framework with which to think about these and other sustainability challenges for the future.