Living with HIV and Dying with AIDS

Diversity, Inequality and Human Rights in the Global Pandemic

Living with HIV and Dying with AIDS LOOK INSIDE
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  • Lesley Doyal, University of Bristol, UK with Len Doyal, Queen Mary, University of London, UK
  • Series: Global Health
  • There is now a vast literature on HIV and AIDS but much of it is based on traditional biomedical or epidemiological approaches. Hence it tells us very little about the experiences of the millions of people whose living and dying constitute the reality of this devastating pandemic. Doyal brings together findings from a wide range of empirical studies spanning the social sciences to explore experiences of HIV positive people across the world. This will illustrate how the disease is physically manifested and psychologically internalised by individuals in diverse ways depending on the biological, social, cultural and economic circumstances in which they find themselves. A proper understanding of these commonalities and differences will be essential if future strategies are to be effective in mitigating the effects of HIV and AIDS. Doyal shows that such initiatives will also require a better appreciation of the needs and rights of those affected within the wider context of global inequalities and injustices. Finally, she outlines approaches to address these challenges.

    This book will appeal to everyone involved in struggles to improve the well-being of those with HIV and AIDS. While academically rigorous, it is written in an accessible manner that transcends specific disciplines and, through its extensive bibliography, provides diverse source material for future teaching, learning and research.
  • Contents: Introduction; Posing the problems; Mapping the pandemic; A biographical overview; Depending on healthcare for survival; Challenging livelihoods; Changing sexual lives; Shaping reproductive futures; Human rights: paths to cosmopolitanism; Back to the future; References; Index.
  • About the Author: Lesley Doyal is Emeritus Professor of Health and Social Care at the University of Bristol, UK, and Len Doyal is Emeritus Professor of Medical Ethics, Queen Mary University of London, UK.
  • Reviews: ‘Amidst the plethora of books on AIDS, this volume stands out for its concern to locate and properly “contextualize” the experiences of people with HIV, both socially and geographically. The authors are to be congratulated for synthesising and adding value to scholarship and advocacy internationally.’
    Peter Aggleton, The University of New South Wales, Australia

    ‘Doyal's book shows how social science can help understand and address the challenges facing people living with HIV around the world today. It is a magisterial synthesis presented in a lucid, straightforward and engaging style that illuminates what is at stake in living with HIV today. It is ideally suited to introducing students to this vast and important topic.’
    Vinh-Kim Nguyen, Université de Montréal, Canada

    ‘In this comprehensive book, Doyal starkly traces and connects the gross inequities of the HIV/AIDS pandemic, from infection to death, in relation to political geography, political economy, gender, sexuality, class, and race/ethnicity. Confronting how these inequities harm people with HIV/AIDS and their partners, parents, children, and communities, it offers a galvanizing introduction to the pandemic’s core equity issues.’
    Nancy Krieger, Harvard School of Public Health, USA

    ‘Offering compelling evidence of the inadequacy of biomedical models for the AIDS response, this book provides a clear and lucid look at the inequalities that drive growing rates of HIV infection and the inadequacy of existing systems to address them. Bringing to life the old adage the “personal is political”, it provides valuable evidence of the social and economic realities faced by HIV-infected people everywhere.’
    Sofia Gruskin, University of Southern California, USA

    ‘A powerful combination of qualitative empirical data, sensitive sociological insights into diverse contexts of living and dying with HIV/AIDS, and a clear explication of the relevance of human rights both within nations and globally. Collaborative work between medical and social science researchers is the suggested path to deeper understanding of the profound burden of social suffering that extends beyond biomedical considerations.’
    Solomon Benatar, University of Cape Town, South Africa, and University of Toronto, Canada

    ‘A wide-ranging analysis of what makes HIV such a potent agent of human suffering, and why the remarkable biomedical progress of the past 30 years must be matched by advances in human rights, equity and access for there to be real progress. Here is a contextual backcloth against which clinicians can re-evaluate treatment and care for HIV.’
    Jane Anderson, Homerton University Hospital NHS Foundation Trust, UK

    ‘No other source provides such an insightful, integrated, broadly-focused analysis that uses an explicit conceptual framework to take context and differences into account, systematically connecting human needs, human rights and inequality. This brilliant, accessible book is essential reading for policy-makers, practitioners and academics, whether or not they are interested in the specific case of HIV and AIDs.’
    Pat Armstrong, York University, Toronto, Canada

    'Pulling together a vast amount of literature and studies - the book has 50 pages of references - they examine the global experiences of HIV and AIDS, how different cultures and countries react to HIV and the effect it has on individuals and societies. The book does not make for comfortable reading, particularly with the inequalities and social prejudice faced by people with HIV, especially those living outside of Europe and North America… The authors also explode some of the doom-laden myths that were predicted about the global pandemic. Their writing style is open, easy to read and refreshingly unacademic. This is a fascinating read for everyone interested in HIV and AIDS, those affected by the pandemic or working with people with HIV.' Nursing Standard

    This broad examination of diversity (of both life and death), inequality and human rights in the HIV/AIDS pandemic faces a difficult challenge. It shares ground with numerous other books that have appeared over the last 20 years - and continue to be published regularly each year - that seek to extend our understanding and informed response to one of the most impactful diseases in human history, and certainly the most devastating global threat to health in recent human experience. In a lucid and engaging style, all of what the Doyals have to say about HIV/AIDS is spot on … Do we need to be reminded that inequality is the critical issue in the social distribution of HIV infection, AIDS-related personal and social suffering, access to care, and patterns of mortality? Absolutely! And the Doyals do an excellent job of tracing the role of structural violence across the global geography of HIV/AIDS and bringing the complexities of the pandemic to life. Is it important to continue to explore the range of personal experiences and daily struggles of people living with the disease? Most definitely, as it is not the cold numbers of distant and faceless beings (30,000 fatalities by 2010, five new HIV cases for every two people who enter into treatment) but encountering in their own words the personal struggles and grave challenges of real people that make the pandemic palpable. … In short, it is all worthwhile and of particular use to those who are newer to the field (e.g. students) … There is much this book has to offer by way of its careful coverage of central issues in the pandemic, its unrelenting emphasis on structural factors and the impacts of inequality, and its attempt to respond thoughtfully to the changing world of HIV/AIDS resources. Its utility as a classroom text on key aspects of the pandemic is undeniable.'
    Merrill Singer, Global Public Health

    'The HIV field is critiqued for operating in a silo. Lesley and Len Doyal, who are giants in the worlds of sociology of health and illness and gender studies, and bioethics and human needs, respectively, are arguably outside of this silo. They are not regulars on the international HIV conference circuit and may not be known to many mainstream HIV researchers. But their application of an explicit and well-established conceptual framework to the vast field of HIV - with particular attention to those ‘uncared for and uncared about’ (p. 1) - makes this book a must-read for anyone working in or affected by HIV. This book is the definition of interdisciplinary scholarship, uniting perspectives from political economy, health, gender studies, ethnography, human rights, political philosophy and critical development studies, to offer a comprehensive and evidence-based picture of the global HIV epidemic. … a novel and important contribution to the fields of HIV, global health, and health inequalities. … this book is a must-read for those working in HIV (including basic scientists and clinical researchers), who should be able to locate their own efforts within this paradigm. In addition to those already working in the HIV field, this book is ideal for at least three other audiences. First, this book offers a comprehensive but accessible orientation to the HIV pandemic for anyone who is new to the field. Second, for those interested in health inequalities, Doyal & Doyal offer a compelling case study of HIV as viewed through a particular (and explicit) inequality lens. Third, although written in a scholarly format, the book may also be of interest to people who are beneficiaries of care and who may glean insights from these stories of others living with HIV.'
    Developing World Bioethics

    ‘I would suggest using this text within an advanced sociological course on HIV/AIDS or Medical Sociology …’
    Medical Sociology Online

    'An unprecedented global effort has enabled millions of people to access antiretroviral therapy. Now that the emphasis has been successfully changed from dying with AIDS to living with HIV, this book is a timely reminder of the ethical and moral imperative to match the biomedical progress with attention to social suffering. The book leaves us with the pressing question about how fragile and overburdened health systems can do this.'
    The Lancet

    'In this wonderfully comprehensive book covering a wide range of features related to the HIV/AIDS pandemic, Lesley and Len Doyal document the diversity of experiences of different groups suffering from the pandemic, or its related effects, and offer constructive solutions concerning useful directions for combating the pandemic. … This book will be an invaluable tool for anyone researching or teaching topics related to this pandemic. The research on what it is like to live with HIV or AIDS - with many quotes directly from interviews - is quite fascinating and makes for powerful reading, as we learn about the different physical, psychological and social journeys that those infected with the disease (or others close to them) experience. The conceptual framework outlining the links among HIV/AIDS, inequality and a variety of human needs provides a powerful tool for diagnosing core issues.'
    Political Studies Review.