"Letting Them Die": Why HIV/AIDS Prevention Programmes Fail (African Issues)
Victorian euphemism had its uses. What we in our clinically literal era refer to as sexually transmitted infections once carried a more evocative label: "social diseases." On the evidence adduced in social psychologist Catherine Campbell's remarkable book, that seemingly evasive name was actually closer to the mark. The title of this book comes from a line by South African satirist Pieter-Dirk Uys: "In the old South Africa we killed people. Now we're just letting them die." Regarding the deadly role that social factors have played in the AIDS epidemic, the book poses two questions of burning importance. Why do people in AIDS-ravaged countries continue to engage in unsafe sex, which they know could kill them? And why do programs designed to prevent this practice so often fail? Campbell's answer is that sexual behavior is determined as much by its social and economic context as it is by individual will. What people understand about the human immunodeficiency virus (HIV), believe about themselves, and do in their sexual lives is not entirely of their own choosing but, rather, is profoundly shaped by a complex interplay of social norms, opportunities, expectations, and constraints. Past efforts to combat HIV and AIDS have failed because they have overlooked this fact and relied on narrow biomedical and behavioral interventions, efforts that target individuals but neglect to promote the supportive social processes that empower people to protect themselves. Unless people at risk are involved in nurturing their own "health-enabling community," Campbell writes, information and motivation alone will be insufficient to ensure behavioral change. (Figure) The book reports the outcomes of Campbell's multiyear evaluation of an HIV project in a South African mining town. The town is an archetype of the sort of environment in which the epidemic has thrived; it has 100,000 permanent residents, 70,000 migrants who work in the mines, and 2000 commercial sex workers. At the project's outset, 69 percent of the sex workers, 22 percent of the miners, and 8 percent of the town's 15-year-old girls were HIV-positive. Designed to address both medical and social issues, the project aimed to reach these key groups by promoting peer education, which was a program to train members of a given community to motivate their peers to change the collective norms that endangered their health. The project never worked as hoped. Among sex workers, peer education succeeded in raising HIV awareness and in increasing the women's willingness to practice safer sex. But this progress was of little use to the women if their clients continued to resist using condoms. As one sex worker remarked, "We don't have the power to enforce such decisions." Those who had more power -- mainly miners -- remained trapped in a mind-set of fatalism and machismo because both their managers and their union declined to put any effort into peer education. Although young people embraced peer education more readily, their efforts were stymied by the repressive rules of their schools and community, where few adults were willing to tolerate an open discussion of sex. As a result, pernicious peer pressure went unchecked, notably among boys who ridiculed one another both for abstinence and for condom use. In other words, a genuine attempt at change by some groups was thwarted by larger social strictures. It is telling that the anarchic environment of sex work proved to be a more congenial context for change than did the regulated settings of mines and schools, in which a rigid conception of roles blocked new ways of thinking from taking root. Leaders in industry and education largely saw the problem as one of personal behavior and failed to take responsibility for the role that their own institutions could play in enabling or obstructing individual change. This patronizing approach was mirrored in the project's management, which was led by a remote committee of medical and mining professionals, who did little to encourage the participation of sex workers, young people, or miners. This is symptomatic of a wider tendency among those involved in AIDS projects and other projects to treat people as discrete targets for intervention rather than as agents of their own development. Through this close study, Campbell demonstrates persuasively that programs to prevent HIV infection and AIDS must cultivate change among separate groups and not just within them -- especially in situations in which the social and economic forces dividing people are precisely the same forces that increase their shared risk of HIV infection. This means that all members of the relevant community must have a meaningful role in designing and executing the project since they have the fullest understanding of local conditions and constraints. "Letting Them Die" offers a signal example of why Campbell is considered one of the foremost researchers on HIV and AIDS. It is trenchant, troubling, meticulously reasoned, and compellingly written -- the forthright account of sex workers' lives rivals the most harrowing war memoir. The book also offers vital lessons that, unfortunately, will prove to be increasingly relevant far beyond Africa as the tide of the epidemic swells.Keith E. Hansen, M.P.A., J.D.Copyright © 2004 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.--This text refers to theHardcoveredition.