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Books > Social sciences > Sociology, social studies > Social issues > Illness & addiction: social aspects > AIDS: social aspects
The search for a "patient zero" popularly understood to be the first infected case in an epidemic has been key to media coverage of major infectious disease outbreaks for more than three decades. Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas and fears about contagion and social disorder. McKay presents a carefully documented and sensitively written account of the life of Gaetan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero adopting, challenging and redirecting its powerful meanings as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.
A citizen's guide to America's most debated policy-in-waiting There are few issues as consequential in the lives of Americans as health care-and few issues more politically vexing. Every single American will interact with the health care system at some point in their lives, and most people will find that interaction less than satisfactory. And yet for every dollar spent in our economy, 19 cents go to health care. What are we paying for, exactly? Health care policy is notoriously complex, but what Americans want is quite simple: good health care that's easy to use and doesn't break the bank. Polls show that as many as 70 percent of Americans want the government to provide universal health coverage to all Americans. What's less clear is how to get there. Medicare for All is the leading proposal to achieve to universal health coverage in America. But what is it exactly? How would it work? More importantly, is it practical or practicable? This book goes beyond partisan talking points to offer a serious examination of how Medicare for All would transform the way we give, receive, and pay for healthcare in America.
When addressing the factors shaping HIV prevention programs in sub-Saharan Africa, it is important to consider the role of family planning programs that preceded the epidemic. In this book, Rachel Sullivan Robinson argues that both globally and locally, those working to prevent HIV borrowed and adapted resources, discourses, and strategies used for family planning. By combining statistical analysis of all sub-Saharan African countries with comparative case studies of Malawi, Nigeria, and Senegal, Robinson also shows that the nature of countries' interactions with the international community, the strength and composition of civil society, and the existence of technocratic leaders influenced variation in responses to HIV. Specifically, historical and existing relationships with outside actors, the nature of nongovernmental organizations, and perceptions of previous interventions strongly structured later health interventions through processes of path dependence and policy feedback. This book will be of great use to scholars and practitioners interested in global health, international development, African studies and political science.
To date, there is a dearth of surveillance data on the prevalence of HIV and associated risk behaviours among men who have sex with men (MSM) in South Africa. This is particularly true for data collected from several sites using the same sampling approach. This study called the Marang Men's Project was undertaken to fill this information gap. It was implemented among MSM in the three largest cities of South Africa, namely, Cape Town in the Western Cape, Durban in KwaZulu-Natal and Johannesburg in Gauteng. The high HIV prevalence estimates found in our study among MSM in each of the three study cities call for a need to implement a national HIV bio-behavioural surveillance programme for MSM. The Marang Men's Project has demonstrated that there is an urgent need for interventions, which respond not only to the heterosexual HIV epidemic but also to the HIV epidemic among MSM in South Africa. This survey therefore provides valuable information to SANAC, the national and provincial Departments of Health (DoHs), and lesbian, gay, bisexual, transgender and intersex (LGBTI) organisations to both implement and advocate for improved programmes for the health of MSM.
Whenever the topic of large jails and public hospitals in urban America is raised, a single idea comes to mind. It is widely believed that because we as a society have dis-invested from public health, the sick and poor now find themselves within the purview of criminal justice institutions. In Redistributing the Poor, ethnographer and historical sociologist Armando Lara-Millan takes us into the day-to-day operations of running the largest hospital and jail system in the world and argues that such received wisdom is a drastic mischaracterization of the way that states govern urban poverty at the turn of the 21st century. Rather than focus on our underinvestment of health and overinvestment of criminal justice, his idea of "redistributing the poor" draws attention to how state agencies circulate people between different institutional spaces in such a way that generates revenue for some agencies, cuts costs for others, and projects illusions that services have been legally rendered. By centering the state's use of redistribution, Lara-Millan shows how certain forms of social suffering-the premature death of mainly poor, people of color-are not a result of the state's failure to act, but instead the necessary outcome of so-called successful policy.
A coming-of-age memoir of life on the front lines of the AIDS crisis with ACT UP New York. From the moment Ron Goldberg stumbled into his first ACT UP meeting in June 1987, the AIDS activist organization became his life. For the next eight years, he chaired committees, planned protests, led teach-ins, and facilitated their Monday night meetings. He cruised and celebrated at ACT UP parties, attended far too many AIDS memorials, and participated in more than a hundred zaps and demonstrations, becoming the group's unofficial "Chant Queen," writing and leading chants for many of their major actions. Boy with the Bullhorn is both a memoir and an immersive history of the original New York chapter of ACT UP, the AIDS Coalition to Unleash Power, from 1987 to 1995, told with great humor, heart, and insight. Using the author's own story, "the activist education of a well-intentioned, if somewhat naive nice gay Jewish theater queen," Boy with the Bullhorn intertwines Goldberg's experiences with the larger chronological history of ACT UP, the grassroots AIDS activist organization that confronted politicians, scientists, drug companies, religious leaders, the media, and an often uncaring public to successfully change the course of the AIDS epidemic. Diligently sourced and researched, Boy with the Bullhorn provides both an intimate look into how activist strategies are developed and deployed and a snapshot of life in New York City during the darkest days of the AIDS epidemic. On the occasions where Goldberg writes outside his personal experience, he relies on his extensive archive of original ACT UP documents, news articles, and other published material, as well as activist videos and oral histories, to help flesh out actions, events, and the background stories of key activists. Writing with great candor, Goldberg examines the group's triumphs and failures, as well as the pressures and bad behaviors that eventually tore ACT UP apart. A story of ordinary people doing extraordinary things, from engaging in outrageous, media-savvy demonstrations, to navigating the intricacies of drug research and the byzantine bureaucracies of the FDA, NIH, and CDC, Boy with the Bullhorn captures the passion, smarts, and evanescent spirit of ACT UP-the anger, grief, and desperation, but also the joy, camaraderie, and sexy, campy playfulness-and the exhilarating adrenaline rush of activism.
The Life and Death of ACT UP/LA explores the history of the AIDS Coalition to Unleash Power, Los Angeles, part of the militant anti-AIDS movement of the 1980s and 1990s. ACT UP/LA battled government, medical, and institutional neglect of the AIDS epidemic, engaging in multi-targeted protest in Los Angeles and nationally. The book shows how appealing the direct action anti-AIDS activism was for people across the United States; as well as arguing the need to understand how the politics of place affect organizing, and how the particular features of the Los Angeles cityscape shaped possibilities for activists. A feminist lens is used, seeing social inequalities as mutually reinforcing and interdependent, to examine the interaction of activists and the outcomes of their actions. Their struggle against AIDS and homophobia, and to have a voice in their healthcare, presaged the progressive, multi-issue, anti-corporate, confrontational organizing of the late twentieth century, and deserves to be part of that history.
The Life and Death of ACT UP/LA explores the history of the AIDS Coalition to Unleash Power, Los Angeles, part of the militant anti-AIDS movement of the 1980s and 1990s. ACT UP/LA battled government, medical, and institutional neglect of the AIDS epidemic, engaging in multi-targeted protest in Los Angeles and nationally. The book shows how appealing the direct action anti-AIDS activism was for people across the United States; as well as arguing the need to understand how the politics of place affect organizing, and how the particular features of the Los Angeles cityscape shaped possibilities for activists. A feminist lens is used, seeing social inequalities as mutually reinforcing and interdependent, to examine the interaction of activists and the outcomes of their actions. Their struggle against AIDS and homophobia, and to have a voice in their healthcare, presaged the progressive, multi-issue, anti-corporate, confrontational organizing of the late twentieth century, and deserves to be part of that history.
** With a new introduction by Russell T Davies ** A new edition of the award-winning, ground-breaking account of the early AIDS crisis in Britain. 'A remarkable journalistic achievement.' Time Out 'Powerful . . . Indispensable.' Observer 'Superb.' London Review of Books Winner of the Somerset Maugham Prize How does a country control a virus that is killing increasing numbers of people? How does a government contain an epidemic spread by sex, drug use and blood products? And how does a population react when told that everyone is at risk from infection? By 1986, when the British Government woke up to the problem of AIDS, it estimated that 30,000 people had already been infected with HIV. Why was it so slow to act? Would the situation have been different if most of those affected had not been gay men? Award-winning journalist Simon Garfield presents a story of political intrigue, of panic and hysteria, of wasted opportunities and of a medical battle conducted against seemingly impossible odds. Including interviews with key figures in the fight against the virus as well as those facing personal devastation and prejudice, The End of Innocence is an important and powerful story, compellingly told. Features a new afterword by the author.
With the development of effective antiretroviral therapies (ART) in the mid-1990s, HIV became a treatable although serious condition, and people who are adherent to HIV medications can attain normal or near-normal life expectancies. Because of the success of ART, people 50 and older now make up a majority of people with HIV in high-income countries and other places where ART is accessible. The aging of the HIV epidemic is a global trend that is also being observed in low- and middle-income countries, including countries in sub-Saharan Africa, where the greatest number of older people with HIV reside (3.7 million). While globally over half of older adults with HIV are in sub-Saharan Africa, we have little information about the circumstances, needs, and resiliencies of this population, which limits our ability to craft effective policy and programmatic responses to aging with HIV in this region. At present, our understanding of HIV and aging is dominated by information from the U.S. and Western Europe, where the epidemiology of HIV and the infrastructure to provide social care are markedly different than in sub-Saharan Africa. Aging with HIV in Sub-Saharan Africa addresses this gap in our knowledge by providing current research and perspectives on a range of health and psychosocial topics concerning these older adults from across this region. This volume provides a unique and timely overview of growing older with HIV in a sub-Saharan African context, covering such topics as epidemiology, health and functioning, and social support, as well as policy and program implications to support those growing older with HIV. There are very few published volumes that address HIV and aging, and this is the first book to consider HIV and aging in sub-Saharan Africa. Most publications in this area focus on HIV and aging in Uganda and South Africa. This volume broadens the scope with contributions from authors working in West Africa, Botswana, and Kenya. The range of topics covered here will be useful to professionals in a range of disciplines including psychology, epidemiology, gerontology, sociology, health care, public health, and social work.
For young gay men who came of age in the United States in the 1980s, the HIV/AIDS epidemic was a formative experience in fear, hardship, and loss. Those who were diagnosed before 1996 suffered an exceptionally high rate of mortality, and the survivors-both the infected individuals and those close to them-today constitute a "bravest generation" in American history. The AIDS Generation: Stories of Survival and Resilience examines the strategies for survival and coping employed by these HIV-positive gay men, who together constitute the first generation of long-term survivors of the disease. Through interviews conducted by the author, it narrates the stories of gay men who have survived since the early days of the epidemic; documents and delineates the strategies and behaviors enacted by men of this generation to survive it; and examines the extent to which these approaches to survival inform and are informed by the broad body of literature on resilience and health. The stories and strategies detailed here, all used to combat the profound physical, emotional, and social challenges faced by those in the crosshairs of the AIDS epidemic, provide a gateway for understanding how individuals cope with chronic and life-threatening diseases. Halkitis takes readers on a journey of first-hand data collection (the interviews themselves), the popular culture representations of these phenomena, and his own experiences as one of the men of the AIDS generation. This riveting account will be of interest to health practitioners and historians throughout the clinical and social sciences-or to anyone with an interest in this important chapter in social history.
Almost four decades after the discovery of HIV/AIDS, the world continues to grapple with this public health challenge. Thinking Differently about HIV/AIDS explores the limits of mainstream approaches to the HIV/AIDS epidemic and challenges readers to develop alternate solutions, emphasizing the value of critical social science perspectives. The contributors investigate traditions of inquiry - governmentality studies, institutional ethnography, and Indigenous knowledges, among others - to determine what these perspectives can bring to HIV/AIDS research, policy, and programming. Ultimately, this book demonstrates how and why critical social science is necessary for rethinking research and action required to address the epidemic.
A tidal wave of panic surrounded homosexuality and AIDS in the 1980s and early 1990s, the period commonly called 'The AIDS Crisis'. With the advent of antiretroviral drugs in the mid '90s, however, the meaning of an HIV diagnosis radically changed. These game-changing drugs now enable many people living with HIV to lead a healthy, regular life, but how has this dramatic shift impacted the representation of gay men and HIV in popular culture? Positive Images is the first detailed examination of how the relationship between gay men and HIV has transformed in the past two decades. From Queer as Folk to Chemsex, The Line of Beauty to The Normal Heart, Dion Kagan examines literature, film, TV, documentaries and news coverage from across the English-speaking world to unearth the socio-cultural foundations underpinning this 'post-crisis' period. His analyses provide acute insights into the fraught legacies of the AIDS Crisis and its continued presence in the modern queer consciousness.
Thirty years after the identification of the disease that became known as AIDS, humanitarian organizations warn that the fight against HIV/AIDS has slowed, amid a funding shortfall and donor fatigue. In this book, Bjorn Lomborg brings together research by world-class specialist authors, a foreword by UNAIDS founding director Peter Piot and perspectives from Nobel Laureates and African civil society leaders to identify the most effective ways to tackle the pandemic across sub-Saharan Africa. There remains an alarming lack of high-quality data evaluating responses to HIV. We still know too little about what works, where and how to replicate our successes. This book offers the first comprehensive attempt by teams of authors to analyze HIV/AIDS policy choices using cost-benefit analysis, across six major topics. This approach provides a provocative fresh look at the best ways to scale up the fight against this killer epidemic.
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.
The Culture of AIDS in Africa enters into the many worlds of
expression brought forth across this vast continent by the ravaging
presence of HIV/AIDS. Africans and non-Africans, physicians and
social scientists, journalists and documentarians share here a
common and essential interest in understanding creative expression
in crushing and uncertain times. They investigate and engage the
social networks, power relationships, and cultural structures that
enable the arts to convey messages of hope and healing, and of
knowledge and good counsel to the wider community. And from Africa
to the wider world, they bring intimate, inspiring portraits of the
performers, artists, communities, and organizations that have
shared with them their insights and the sense they have made of
their lives and actions from deep within this devastating epidemic.
When Daniel Baxter, the medical director of a large community health centre in New York City, accepted an invitation to work in Botswana, he hardly knew where to find the country on a map. Yet he set out nonetheless, naively confident that he would do good by bringing his first-world expertise to help in the roll-out of Africa's first HIV/AIDS treatment programme. But Baxter's good intentions were quickly overwhelmed by the reality of AIDS in Africa, his misguided altruism engulfed by the sea of need around him. Lifted up by Botswana's remarkable and forgiving people and by the country's majestic beauty, Baxter soldiered on. His memorable encounters with those living with HIV/AIDS - their unfathomable woes assuaged by their oft-repeated declaration ''But God is good!'' - profoundly changed the way he thought about himself and his role as a doctor. Eight years later, when Baxter finally left Africa to return to the United States, he realised he was not so much the giver as the recipient of a great human gift. Compelling, humorous, courageous and often heart-breaking, One Life at a Time documents the extraordinary experiences of a fallible but compassionate doctor working at the front line of HIV/AIDS care in Botswana.
The experience of illness (both mental and physical) figures prominently in the critical thought and activism of the 1960s and 1970s, though it is largely overshadowed by practices of sexuality. Lisa Diedrich explores how and why illness was indeed so significant to the social, political, and institutional transformation beginning in the 1960s through the emergence of AIDS in the United States. A rich intervention-both theoretical and methodological, political and therapeutic-Indirect Action illuminates the intersection of illness, thought, and politics. Not merely a revision of the history of this time period, Indirect Action expands the historiographical boundaries through which illness and health activism in the United States have been viewed. Diedrich explores the multiplicity illness-thought-politics through an array of subjects: queering the origin story of AIDS activism by recalling its feminist history; exploring health activism and the medical experience; analyzing psychiatry and self-help movements; thinking ecologically about counterpractices of generalism in science and medicine; and considering the experience and event of epilepsy and the witnessing of schizophrenia. Indirect Action places illness in the leading role in the production of thought during the emergence of AIDS, ultimately showing the critical interconnectedness of illness and political and critical thought.
This book offers an original anthropological approach to the AIDS epidemic in South Africa. Based on a more than fifteen years association with the region, it demonstrates why AIDS interventions in the former homeland of Venda have failed and possibly even been counterproductive. It does so through a series of ethnographic encounters, from kings to condoms, which expose the ways in which biomedical understanding of the virus have been rejected by and incorporated into local understandings of health, illness, sex, and death. Through the songs of female initiation, AIDS education, and wandering minstrels, the book argues that music is central to understanding how AIDS interventions operate. This book elucidates a hidden world of meaning in which people sing about what they cannot talk about, where educators are blamed for spreading the virus, and in which condoms are often thought to cause AIDS. The policy implications are clear: African worldviews must be taken seriously if AIDS interventions in Africa are to become successful."
A witch's curse, an imperialist conspiracy, a racist plot-HIV/AIDS is a catastrophic health crisis with complex cultural dimensions. From small villages to the international system, explanations of where it comes from, who gets it, and who dies are tied to political agendas, religious beliefs, and the psychology of devastating grief. Frequently these explanations conflict with science and clash with prevention and treatment programs. In Witches, Westerners, and HIV Alexander Roedlach draws on a decade of research and work in Zimbabwe to compare beliefs about witchcraft and conspiracy theories surrounding HIV/AIDS in Africa. He shows how both types of beliefs are part of a process of blaming others for AIDS, a process that occurs around the globe but takes on local, culturally specific forms. He also demonstrates the impact of these beliefs on public health and advocacy programs, arguing that cultural misunderstandings contribute to the failure of many well-intentioned efforts. This insightful book provides a cultural perspective essential for everyone interested in AIDS and cross-cultural health issues.
This book examines the formation of scientific knowledge about the AIDS epidemic in the 1980s and shows the broader cultural assumptions which grounded these knowledge. Alex Preda highlights the metaphors, narratives, and classifications which framed scientific hypotheses about the nature of the infectious agent and its transmission ways and compares these arguments with those used in the scientific knowledge about SARS. Through detailed rhetorical analysis of biomedical publications, the author shows how scientific knowledge about epidemics is shaped by cultural narratives and categories of social thought. Preda situates his analysis in the broader frame of the world risk society, where scientific knowledge is called upon to support and shape public policies about prevention and health maintenance, among others. But can these policies avoid the influence of cultural narratives and of social classifications? The book shows how culture matters for prevention and health policies, as well as with respect to how scientific research is organized and funded.
AIDS has ravaged Africa. South of the Sahara, the epidemic is catastrophic. Every day seventeen hundred South Africans contract HIV, and in Botswana over a third of adults are infected. With the death toll ever increasing, this book explores how governments, charities and families are responding to the next wave of the crisis: millions of orphaned children.Told through moving first-hand testimonies and lucid commentaries, Children of Aids gives an unparalleled insight into the reality of day to day life for the street orphans, care-takers, volunteers, doctors and family members living through the crisis across South Africa, Zambia and Uganda. The extended family is the traditional safety net for orphans, but under this kind of strain other ways of coping with the crisis are emerging. In addition to family case studies, Emma Guest looks at childcare projects, fostering schemes and orphanages; the benefits and difficulties of international involvement; and the prospects for children living on the streets or in child-headed families.These accounts of personal courage and resilience in the face of unimaginable poverty and bereavement are both disturbing and awe-inspiring. Emma Guest questions what will happen to the minds of a generation that grows up alone, poor and ashamed by the stigma of the disease that killed their parents. By revealing the way that individuals are affected by AIDS, and how they cope with such an epidemic, Guest also shows what others can do to help, and a list of aid agencies and contact addresses is included.
In the mid-1980s public health officials in North America, Europe, Japan, and Australia discovered that almost half of the haemophiliac population, as well as tens of thousands of blood transfusion recipients, had been infected with HIV-tainted blood. This book provides a comparative perspective on the political, legal, and social struggles that emerged in response to the HIV contamination of the blood supply of the industrialized world. It describes how eight nations responded to the first signs that AIDS might be transmitted through blood, how early efforts to secure the blood supply faltered, and what measures were ultimately implemented to resolve the contamination. The authors detail the remarkable mobilization of haemophiliacs who challenged the state, the medical establishment, and their own caregivers to seek recompense and justice. In the end, the blood establishments in almost all the advanced industrial nations were shaken. In Canada, the Red Cross was forced to withdraw from blood collection and distribution. In Japan, pharmaceutical firms that manufactured clotting factor agreed to massive compensation -- $500,000 per haemophiliac infected. In France, blood officials went to prison. Even in Denmark, where the number of infected haemophiliacs was relatively small, the struggle and litigation surrounding blood has resulted in the most protracted legal and administrative conflict in modern Danish history. Blood Feuds brings together chapters on the experiences of the United States, Japan, France, Canada, Germany, Denmark, Italy, and Australia with four comparative essays that shed light on the cultural, institutional, and economic dimensions of the HIV/blood disaster.
For gay men, the demands of the AIDS epidemic are enormous and
unrelenting. Regardless of HIV status, all are called on to
maintain vigilant safety with sex, to face down a cultural stigma
greater even than homophobia, and to somehow find a way to go
forward in a world heavy with loss. As exhaustion and grief
threaten to overwhelm the activism and optimism of earlier years,
and with new infections on the rise among young gay men, the
challenge of finding meaning in a world turned upside down is more
than an idle philosophical exercise. It is a matter of
psychological and perhaps even physical survival.
Methods designed to guide the allocation of healthcare so as to maximize population health have been criticized as fundamentally unfair. In a closer analysis of this ethical critique of the use of cost-effectiveness author Daniel M. Hausman responds to the main complaints about the unfairness of cost-effectiveness, while also recognizing that there should be other factors-especially in cases of discrimination-guiding health-related treatment. Central to How Health Care Can Be Cost-Effective and Fair is whether cost-effective allocation of healthcare violates ethical constraints. Several commentators argue that using cost-effective reasoning to guide the distribution of healthcare is fundamentally unfair, not just because it does not take distribution into account, but because it fails to prioritize the severity of illness and fails to give everyone, and especially disabled people and those from historically underprivileged populations, a fair chance of being treated. While Hausman recognizes the complexity and shortcomings of cost-effective reasoning, he maintains that it should be a leading principle in the allocation of health-related resources. In Hausman's view, many values-such as compassion, freedom, respect, and solidarity should govern healthcare in addition to promoting well-being and treating individuals fairly. In its efforts to promote population health fairly, healthcare should respond to and respect individuals' values and choices. |
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