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AIDS: The Making of a Chronic Disease.

For more than a year AIDS activists and the Centers for Disease Control were locked in a fierce, even violent struggle over the agency's definition of the disease. How AIDS is defined matters, not just to epidemiologists who track the disease and clinicians who treat it, but to patients who are awarded or denied benefits on the basis of whether they have it, and to municipalities whose level of federal funding depends on how many cases of it they report.

These three collections, with six editors and nearly fifty contributors, also look at definitions of AIDS but in the broad context of societies' political, health care, and cultural responses to a new, lethal, and complex syndrome. Although the volumes offer different conceptualizations of the disease, they all cogently illustrate the concept that disease is a social as well as a medical construct.

AIDS as a Chronic Illness

In AIDS: The Making of a Chronic Disease, Elizabeth Fee and Daniel Fox, editors of a previous collection (AIDS: The Burdens of History, 1988), have compiled a diverse collection of twenty-three essays from a multidisciplinary group of contributors. The editors' primary thesis is that in the 1980s AIDS was viewed as a contemporary plague, discontinuous with the modern history of disease, and thus best understood in relation to long-past, sudden, and time-limited outbreaks of disease. This view appealed both to "alarmists," who advocated a return to the classic repertoire of coercive public health measures like mandatory testing and isolation of infectious individuals, and to "advocates of equanimity," who pointed to past examples of the failure of these measures to stem the spread of disease and the "exchange of individual rights for an illusory public good." This initial view, say Fee and Fox, has given way to the sobering realization that AIDS is not a transient threat but an endemic condition, especially in hard-hit minority communities in the United States. The appropriate analogue, they assert, is not cholera but cancer.

The view of AIDS as a chronic disease has gained wide acceptance. The availability of temporizing treatments, the institutionalization of research and financing, and development of a cadre of AIDS specialists all support the thesis. This perspective is attractive to clinicians and patients because it offers hope of long-term survival; it is appealing to critics of the health care and social service systems because it clearly points out the inadequacies of these institutions to meet long-term needs.

AIDS and the Plague Mentality

By contrast, most of the contributors to Perspectives on AIDS: Ethical and Social Issues, edited by Christine Overall and William P. Zion, focus on the plague mentality, more specifically on the negative consequences of irrationality, prejudice, and phobia. The editors and contributors, Canadians all, review the culture and context of HIV/AIDS and then examine specific questions such as health care workers' rights and responsibilities (Benjamin Freedman), HIV testing and confidentiality (H. A. Bassford), ethics and religion (William P. Zion), and health care policy (B. Lee). Canadian culture softens the sharp clash between the individual and the state that often characterizes U.S. culture, says Arthur Schafer in his essay, because of the influence of mediating group loyalties such as regionalism and ethnicity. Nevertheless, he declares, the plague mentality is threatening positive values in Canadian culture, such as "rationality, altruism, public-spiritedness, and a sense of humanity."

Political Cultures and "Normalization"

AIDS in the Industrialized Democracies, edited by David Kirp and Ronald Bayer, looks specifically at the political cultures that influenced policy development in the 1980s. As the editors point out, "a single viral threat had imposed itself on nations at very different levels of economic development; with very different political systems, cultural backgrounds, and attitudes toward sexuality, drug use, and privacy; and with very different conceptions of the role of the state in protecting the public health." These variations have led governments both to support needle exchange schemes for drug injectors (the Netherlands and Canada) and to oppose them bitterly (the U.S. and Germany), to close or regulate gay bathhouses (New York City and San Francisco) and to keep them open (Australia, the Netherlands, Denmark), to protest the attendance at schools of children with AIDS (Spain and the U.S.) and to welcome them (everywhere else).

The editors identify two main strategies--containment-and-control and cooperation-and-inclusion--with the latter gaining acceptance in all but a few instances, such as the German state of Bavaria and, surprisingly, Sweden. Cooperation-and-inclusion, emphasizing voluntariness, was deemed necessary to prevent those most at risk of contracting and spreading the disease from avoiding public health agencies and medical care providers. One of the editors' main themes is that the 1990s mark the end of "exceptionalism." In the 1980s policies responded to the claims that AIDS was unlike other infectious and sexually transmitted diseases because of the lack of effective treatments and widespread stigmatization and discrimination. The movement now is toward "normalization," bringing AIDS into the mainstream of health policy.

The chapters are written, variously, by political scientists, sociologists, activists, and government officials, either from the country they describe or close observers of its politics. Because each author or team was asked to respond to several specific questions (for example, about public health measures, confidentiality and discrimination, and health and social security), there is more consistency in these pages than in the other collections reviewed or in such volumes generally.

The chapter on Canada, written by political scientists David M. Rayside and Evert A. Lindquist, is a useful companion to the Canadian volume edited by Overall and Zion. Provincial identity and power, described as a characteristic of Canadian culture in that book, here become political and economic reality. Provincial governments largely control health care and thus become prime targets for AIDS activism. Read together, the two accounts portray a society heavily influenced by the U.S. but with some significant differences. For example, health care is more universally available in Canada because of its insurance system, but many experimental drugs are not as widely available as they are in the U.S., either through controlled clinical trials or expanded access programs for patients ineligible for research studies.

The chapter on Japan, by Eric A. Feldman and Shohei Yonemoto, is particularly interesting. Like the essay on Japan in AIDS: The Making of a Chronic Disease by James W. Dearing, it describes the unique history of the disease in Japan. Nearly all of Japan's 500 cases, out of a population of 120 million, have occurred among hemophiliacs, who contracted the disease through contaminated blood imported largely from the U.S. The Ministry of Health and Welfare delayed for over two years introducing a heat-treatment process, available in the U.S. since 1983, to purify blood products. The delay was intended to give a Japanese firm time to catch up and protect its market share. As a result an estimated 1,000 men were infected. In 1988 hemophiliacs, previously hidden and unorganized, mobilized to demand and receive compensation. (Exceptionalism for hemophiliacs is a common theme in these chapters.)

The tendency to blame foreigners for bringing AIDS to their shores is found everywhere, even ironically in the U.S., which has more cases then any other developed country. Xenophobia around AIDS is particularly strong in Japan. One can only speculate about the reaction in Japan when thousands of outspoken AIDS researchers and advocates, including many HIV-infected people, descend on Yokohama for the Xth International AIDS Conference in 1994.

Which Conceptualization to Choose?

All the conceptualizations offered in these collections are accurate, yet none on its own conveys the complex web of policies and attitudes, and the attendant ethical problems, that most fully describes AIDS today. HIV/AIDS is becoming a chronic, treatable disease, at least for those with access to health care in developed countries. And yet in important ways AIDS is not like cancer, and certainly not like heart disease or stroke. The plague mentality still controls much public opinion and policy responses. A recent survey of 1,800 people with AIDS conducted by the National Association of People with AIDS found that 12.3 percent had experienced violence in the home and 21.4 percent had encountered it in the community.

AIDS exceptionalism is certainly on the decline, as the benefits of early diagnosis and intervention increase. As Kirp and Bayer acknowledge, however, the mainstream that AIDS policy is entering has clearly shifted course as a result of the era of exceptionalism. Perhaps the most dramatic example is the expedited and broadened drug approval process, which is bringing more experimental drugs earlier to more people with life-threatening diseases. Other examples are the increase in community-based action and advocacy around health issues and a new emphasis on infection control in medical practice.

If the U.S. was unprepared to deal with a modern plague, it is no better prepared to cope with the financial, social, and human costs of chronic illness or mainstream medical care that includes AIDS. From the perspective of bioethics, the important questions for the future are not just those that focus on individual or professional behavior but also systemic questions of equity and allocation of scarce resources. Questions of global equity are already high on the agendas of representatives of hard-hit Third World countries, especially as the research and pharmaceutical industries gear up for broad-scale vaccine trials.

All these perspectives will be needed in the current stage of the HIV epidemic, in which tuberculosis has reemerged in a new, virulent, drug-resistant strain in hospitals, shelters, and prisons. Most at risk to contract TB, to die from it, and, unless rendered noninfectious through a long course of drug therapy, to spread it are HIV-infected individuals. The dual epidemics of HIV and TB will provide yet another challenge to current policies. And as the essay on "viral traffic" by Stephen S. Morse in AIDS: The Making of a Chronic Disease superbly illustrates, "infectious diseases are not a vestige of our pre-modern past . . . they are the price we pay for living in the organic world." No one knows what lies beyond AIDS. These collections offer rich resources for reflection on our biological and social vulnerabilities.
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Author:Levine, Carol
Publication:The Hastings Center Report
Article Type:Book Review
Date:Jul 1, 1993
Previous Article:Pursuing a peaceful death.
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