AIDS AND THE Public Debate AIDS AND THE Public Debate Historical and Contemporary Perspectives Caroline Hannaway Editor-in-chief Victoria A. Harden Editor John Parascandola Editor 1995 I OS Press Amsterdam • Oxford • Tokyo • Washington DC Ohmsha Tokyo • Osaka • Kyoto © Caroline Hannaway All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior written permission from the publisher. ISBN 90 5199 190 8 (IOS Press) ISBN 4 274 90013 4 C3047 (Ohmsha) Library of Congress Catalogue Card Number 94-078473 Publisher IOS Press Van Diemenstraat 94 1013 CN Amsterdam Netherlands Distributor in the UK and Ireland IOS Press/Lavis Marketing 73 Lime Walk Headington Oxford OX3 7AD England Distributor in the USA and Canada IOS Press, Inc. P.O. Box 10558 Burke, VA 22009-0558 USA Distributor in Japan Ohmsha, Ltd. 3-1 Kanda Nishiki - Cho Chiyoda - Ku Tokyo 101 Japan LEGAL NOTICE The publisher is not responsible for the use which might be made of the following information. PRINTED IN THE NETHERLANDS Contents Preface vii Introduction 1 Part I. AIDS and the United States Public Health Service The Early Days of AIDS as I Remember Them 9 C. Everett Koop The CDC and the Investigation of the Epidemiology of AIDS 19 James W. Curran The NIH and Biomedical Research on AIDS 30 Victoria A. Harden AIDS and the FDA 47 James Harvey Young AIDS: Reflections on the Past, Considerations for the Future 67 Anthony S. Fauci Part II. AIDS and American Society The National Commission on AIDS 77 June E. Osborn The Implications of AIDS for the Development of Therapies and Vaccines: A Pharmaceutical Industry Perspective 86 R. Gordon Douglas, Jr. AIDS and Minority Health 98 Mark Smith Publishing AIDS Papers in the Early 1980s 107 Ruth M. Kulstad AIDS: From Public History to Public Policy 124 Allan M. Brandt The Impact of AIDS on American Culture 132 Richard Goldstein Part III. The International Consequences of AIDS Pestilence and Restraint: Haitians, Guantanamo, and the Logic of Quarantine 139 Paul Farmer “Unambiguous Voluntarism?” AIDS and the Voluntary Sector in the United Kingdom, 1981-1992 153 Virginia Berridge Reversible History: Blood Transfusion and the Spread of AIDS in France 170 Anne Marie Moulin Women’s Destiny and AIDS in Uganda 187 Maryinez Lyons Notes on Contributors 203 Index 207 Preface he editors wish to acknowledge with gratitude the contributions of many peo¬ T ple and organizations that made this volume possible. The initial proposal for such a book was put forward at the 1992 meeting of the AIDS History Group of the American Association for the History of Medicine by William H. Helfand, who, with his wife Audrey, manifested their interest tangibly by tak¬ ing on much of the logistical management of the conference that stimulated production of the book. Financial support for the conference was generously provided by Merck Co., Inc. and Hoffmann-La Roche, Inc. as patrons, and by SmithKline Beecham Pharmaceuticals and the Upjohn Company as contributors. The National Library of Medicine and the National Museum of Health and Medicine provided meeting space and support. The fol¬ lowing individuals contributed to the conference and provided encouragement in bringing out the book: Robert A. Whitney, Deputy Surgeon General, Public Health Service; Ruth L. Kirschstein, Acting Director, National Institutes of Health; Donald A. B. Lindberg, Director, National Library of Medicine; Arthur J. Lawrence, Acting Director, National AIDS Program Office, Public Health Service; Kristine Gebbie, National AIDS Policy Coordinator; and Richard J. Levinson, Director of Public Affairs, National Museum of Health and Medicine. Bringing the volume to publication was facilitated by in-kind assistance provided by the Office of the Director, National Institutes of Health, and the Office of the Assistant Secretary for Health, Public Health Service. Within the NIH Office of Communications, special thanks are due to R. Anne Thomas, Associate Director for Communications; Marc Stern, Chief of the NIH News Branch; and Richard McManus, Editor of the NIH Record. Dorothy Jones of the NIH Historical Office was of great help in the organization of the conference and in coordinating the management and processing of the book manuscript. Valuable assistance, including design of the cover, was also given by the NIH Medical Arts and Photography Branch, especially by Branch Chief Ronald Winterrowd. Within the PHS Office of the Assistant Secretary for Health, Vivien Guckenheimer of the PHS Historian’s Office provided helpful conference and organizational support. In addition, thanks are due to Yale Altman, editorial director, and to Margaret Brown, for her editorial assistance and for producing the index. Finally, the editors of the book are grateful to their families for understanding and encouragement. AIDS and the Public Debate 1 Introduction IDS has had a history of little more than a decade, but its impact on society has A been so significant and its effects so diverse that it is not too early to begin to analyze the ways in which this disease has shaped our world and our reactions to it. Indeed, this is not the first book to attempt such an analysis. The unique feature of this volume, and the conference on which it is based, is that it brings together two very different and complementary perspectives. Some of the contributions are by physicians and scientists who have been and still are participating in AIDS research and the making of AIDS policy. For example, former Surgeon General C. Everett Koop, Anthony S. Fauci of the National Institutes of Health, and James W. Curran of the Centers for Disease Control and Prevention provide personal accounts of these developments. Other contributions are from historians and social scientists, who reflect on their subjects from a more impersonal viewpoint, using the analytical tools of their crafts. The division, of course, is not always completely clear-cut, as exemplified by the papers of Paul Farmer and Maryinez Lyons, who may write as historians/social scientists, but who also have had first¬ hand experience of the situations they discuss. One might, in fact, argue that we have all been participants to some extent in the unfolding AIDS drama. This book explores a variety of themes related to AIDS and the public debate over the disease. One of the subjects that necessarily receives significant attention is the role of the United States federal public health bureaucracy in the AIDS crisis and the impact that the epidemic has had on the agencies involved. The Public Health Service (PHS), housed with¬ in the Department of Health and Human Services (DHHS), has had the primary responsi¬ bility for responding to the AIDS epidemic, and several papers discuss the contributions of the PHS in the fight against AIDS. The three PHS agencies at the forefront of the crisis were the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the Food and Drug Administration (FDA). The CDC played a central role in establishing how the disease was transmitted and in tracking the epidemic. NIH scientists were codiscoverers of the HIV virus, developed a test for detecting the virus in blood, and designed and implemented clin¬ ical trials on drugs such as AZT (Azidothymidine). The FDA developed policies to safeguard the blood supply, modified regulations to speed up the evaluation of therapeutic agents for AIDS, and led the fight against AIDS quackery. At the same time, the PHS Surgeon General crusaded to educate the American public about AIDS. Several papers, however, make it clear that the efforts of the PHS (which June Osborn calls “diligent and sometimes heroic”) were hampered by lack of support at the top levels of the Reagan Administration. Politics as well as science dictated the government’s response at various stages. AIDS was not viewed solely as a medical issue, but was enmeshed with moral AIDS and the Public Debate 2 Introduction concerns involving sexuality, substance abuse, and other controversial matters. President Reagan himself was slow to speak out about the AIDS crisis, thus failing to provide the lead¬ ership for which the situation called. Sometimes there was active interference with the work of health officials. Former Surgeon General Koop, for example, reveals that for some three years he was prevented from speaking out on the subject of AIDS by those he refers to as “political meddlers” in the White House. Koop complains that there were those in govern¬ ment who “placed conservative ideology above saving human lives.” As Allan M. Brandt reminds us, “disease is not merely biological, but it is shaped by behavioral, social, cultural, and political forces.” The papers in this volume amply demon¬ strate the ways in which a variety of forces have influenced our understanding of and our reaction to AIDS. They also show that AIDS in turn has had a significant impact on public policy and social institutions. The disease has made itself felt in science, politics, and the arts. In the words of Anthony Fauci, “AIDS has had an extraordinary and historical impact on the manner in which scientists, health care providers, government administrators and reg¬ ulators, and constituency groups interact.” Fauci also points out that it has proved impossible to separate HIV science from HIV policy. The AIDS debate has transformed the process of lobbying for research funds for a particular purpose. The success of AIDS activists in obtaining more government funding for AIDS research and in affecting the design of clinical trials for AIDS drugs has encouraged those concerned with other diseases (e.g., breast cancer) to take a more activist approach in their demands. The AIDS crisis has also raised anew, as Victoria Harden notes, the debate over targeted, centrally-directed research versus a more traditional reliance on basic research directed by individual investigators.