Abstract
Contemporary Sociology 44(5):657–59. First published August 31, 2015.
Lesley Doyal brings together a wide and disparate literature to analyze the global HIV pandemic, distinguishing the natures of epidemics in the global North from those in middle- and low-income countries as these are inherently tied to social, economic, and cultural contexts. Her work is informed by experience gained by spending many weeks a year over nearly two decades at the University of Cape Town’s Women’s Health Research Unit. This book is well-written and rigorous, accessible to diverse audiences, and driven by compassion and concern for the millions of virtually unseen women, children, and men suffering with untreated HIV and/or AIDS, unable to care for themselves and their dependents due to preventable inequalities. It might make you weep. It should. Len Doyal contributes his expertise in moral and political philosophy relevant to human rights as these are connected to healthcare in general and HIV in particular. While acknowledging the importance of prevention, the Doyals focus on the experiences of those infected with HIV and dying of AIDS.
A central theme of the book is the need for increased social scientific and interdisciplinary research, with a focus on social processes rather than individual risk factors. The book’s ambitious effort integrates a vast international, multi-disciplinary literature, including quantitative and qualitative work, covering multiple aspects of the HIV pandemic. While the scope of the work is too broad to cover specific topics in great depth, extensive references (more than 20 percent of the book) are provided for readers who want to delve into particular issues. A second theme that informs the work is intersectionality. Where available, research and theory are brought in to address the effects of the intersections of gender, race, nationality (or geographic region), and sexuality on matters such as the nature of local epidemics, transformations of identities and selves, access to care, reproductive futures, and more.
After presenting the global HIV state of affairs first and foremost as a problem of inequality, Doyal provides an excellent, concise history and map of the pandemic. Of particular interest are her analyses of local epidemics within the pandemic and diversity within positive populations. This is followed by an overview of social-scientific research and theory on living with illness, with particular attention to identity, stigma, disclosure of HIV status, and facing death. These are examined within the context of changing local economies, cultures, and intersectionalities. For instance, in some South African settings the disruption brought about by the change from agriculture to wage labor leaves many HIV-positive persons depending solely upon their families, rather than the larger community. In the absence of available resources, ill persons can become a drain on families, leading to hostility, whereas there is less stigma enacted where care is available. In some parts of China, families might provide care and financial support, but they insist on strict secrecy, to avoid shame. This level of detail is introduced throughout the book, with direct quotes from participants in qualitative studies, as well as relevant statistics from other forms of research. This work gives voice to the suffering, putting their experiences within the larger pandemic and global framework.
The dependency of HIV-positive persons on health care presents a mindboggling complexity of problems. As late as 2009, while ART (anti-retroviral treatment) was almost universally available in the global North, such care was available to as few as 15 percent of infected persons in Eastern Europe and Central Asia. Availability depended not only on the various countries’ resources, but also on governmental priorities, stigmas suffered by specific groups of infected persons, inequalities within countries, and weaknesses of healthcare systems even when ART costs decreased. Where ART is available, costs for blood tests might remain, treatment for opportunistic infections might be unavailable, and access to “free” transportation might depend on the ability to pay bribes. Mistrust of Western medicine and the illogical (for many) idea that medicine does not cure, but must be taken long term have further complicated the picture. Clearly assuring access to and use of care requires more than formal free care and patient education.
Other aspects of living with HIV addressed in the book include maintaining a livelihood, sexuality, and reproduction. Even with access to ART and increased ability to work, jobs are not equally available; discrimination against the HIV-positive, particularly injecting drug users, remains real. In the global South, work is hard to find even for the able-bodied; and work that is available is generally quite physically demanding. When persons become too ill to work, it impacts not only them and their immediate families, but potentially the entire community. Moreover, people who are very ill cannot contribute to the household in other expected ways. Adult women, in particular, are expected to care for themselves and others. Thus, illness and death can impoverish households that were already in precarious circumstances. In terms of sexuality, much more research is needed, research that avoids a simplistic dichotomy between heterosexuality and men having sex with men while attending to the sexual needs of HIV-positive persons. Finally, HIV reshapes reproductive futures. While new technologies that protect mothers and babies are available in the global North, elsewhere even contraception might not be available. Even though HIV-positive status is a deterrent to childbearing, there is much conception among infected persons. Beyond transmission of HIV to the child, conception, childbearing, and the well-being of mothers has been virtually ignored by researchers. Social and cultural pressures to reproduce can be overwhelming and little is known of the fears experienced by potential parents who are HIV positive.
The Doyals conclude their work by coming full circle, convincingly addressing HIV as a human rights issue, with these rights seen as a matter of universal entitlement. They review international agreements and declarations on human rights, as well as constraints on putting these into practice. Key philosophical approaches are presented, one that views human rights as civil and political rights and freedoms and another that focuses on deprivations that prevent people from pursuing their interests; the needs of HIV sufferers involve both of these. One of the biggest difficulties is that those entities responsible for fulfilling these rights—typically the nation-state—depend on others respecting their own rights. The result in the global South is the inability of many nations to protect the rights of their own people. Such nations have huge populations devastated by poverty, leaving sufferers dependent upon woefully inadequate healthcare systems and the charity of international organizations. The Doyals argue that (1) the needs of HIV-positive populations must be addressed within the context of healthcare and other needs generally, including social and economic needs, and (2) recognition of universal human rights implies that richer countries have a moral obligation to help poorer countries. Bringing together social and biomedical research while recognizing a needs- and rights-based approach to decision making, with attention to decreasing inequality in the context of globalization can lead in the right direction. The need for such methods is dramatically highlighted in the current Ebola epidemic, with healthcare systems collapsing, international aid organizations pulling out of western Africa, and entire communities being quarantined, to live or die on their own. Health expenditures are politically determined. In this “must-read” book, the Doyals suggest paths for change.