THE SOCIAL IMPACT OF AIDS IN THE UNITED STATES

Albert R. Jonsen and Jeff Stryker, editors

Panel on Monitoring the Social Impact of the AIDS Epidemic

Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences

Commission on Behavioral and Social Sciences and Education

National Research Council

NATIONAL ACADEMY PRESS
Washington, D.C.
1993



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The Social Impact of Aids in the United States THE SOCIAL IMPACT OF AIDS IN THE UNITED STATES Albert R. Jonsen and Jeff Stryker, editors Panel on Monitoring the Social Impact of the AIDS Epidemic Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences Commission on Behavioral and Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, D.C. 1993

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The Social Impact of Aids in the United States National Academy Press 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their competences and with regard for the appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The project that is the subject of this report was supported by the Public Health Service, U.S. Department of Health and Human Services; the Lilly Endowment, Inc.; and the Sierra Foundation. Library of Congress Cataloging-in-Publication Data National Research Council (U.S.). Panel on Monitoring the Social Impact of the AIDS Epidemic. The social impact of AIDS in the United States / Panel on Monitoring the Social Impact of the AIDS Epidemic ; Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences, Commission on Behavioral and Social Sciences and Education, National Research Council. p. cm. Includes bibliographical references and index. ISBN 0-309-04628-9 1. AIDS (Disease)—Social aspects—United States. I. National Research Council (U.S.). Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences. II. Title RA644.A25N27 1993 362.1’969792’00973—dc20 92-38885 CIP Copyright 1993 by the National Academy of Sciences. All rights reserved. Printed in the United States of America

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The Social Impact of Aids in the United States PANEL ON MONITORING THE SOCIAL IMPACT OF THE AIDS EPIDEMIC ALBERT R. JONSEN (Chair), Department of Medical History and Ethics, School of Medicine, University of Washington RONALD BAYER, School of Public Health, Columbia University RICHARD A. BERK,* Department of Sociology, University of California, Los Angeles ALLAN M. BRANDT, Departments of Social Medicine and History of Science, Harvard University, and Harvard Medical School DAVID L. CHAMBERS, School of Law, University of Michigan DEBORAH COTTON, School of Public Health, Harvard University JOHN H. GAGNON, Department of Sociology, State University of New York, Stony Brook SHIRLEY LINDENBAUM, The Graduate Center, City University of New York EARL E. SHELP, Foundation for Interfaith Research and Ministry, Houston, Texas MARK D. SMITH, Kaiser Family Foundation, Menlo Park, California JAMES TRUSSELL, Office of Population Research, Princeton University JEFF STRYKER, Study Director (through June 1991) *    Did not participate after spring 1991.

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The Social Impact of Aids in the United States The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Frank Press is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Robert M. White is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under responsibility given to the National Academy of Sciences by its congressional charter to be an advisor to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Frank Press and Dr. Robert M. White are chairman and vice chairman, respectively, of the National Research Council.

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The Social Impact of Aids in the United States COMMITTEE ON AIDS RESEARCH AND THE BEHAVIORAL, SOCIAL, AND STATISTICAL SCIENCES JANE MENKEN (Chair) Population Studies, University of Pennsylvania DON DES JARLAIS (Vice Chair), New York State Division of Substance Abuse, New York MARSHALL BECKER, School of Public Health, University of Michigan ROBERT BORUCH, Department of Psychology, Northwestern University THOMAS COATES, School of Medicine, University of California, San Francisco ROBYN DAWES, Department of Social and Decision Sciences, Carnegie Mellon University JOHN GAGNON, Department of Sociology, State University of New York, Stony Brook ALBERT R. JONSEN, Department of Medical History and Ethics, School of Medicine, University of Washington SHIRLEY LINDENBAUM, The Graduate Center, City University of New York LINCOLN MOSES, Department of Statistics, Stanford University BAILUS WALKER, Dean of Public Health, University of Oklahoma LIAISON REPRESENTATIVES TO THE PANEL FROM THE PUBLIC HEALTH SERVICE WENDY BALDWIN, National Institute of Child Health and Human Development G. STEPHEN BOWEN, Health Resources and Services Administration DAVID BROWNELL, Centers for Disease Control VIRGINIA CAIN, National Institute of Child Health and Human Development ANITA EICHLER, National Institute of Mental Health JACOB GAYLE, Centers for Disease Control MARCIA ORY, National Institute on Aging AMY R. SHEON, National Institute of Allergy and Infectious Diseases ELLEN STOVER, National Institute on Mental Health RONALD W. WILSON, Centers for Disease Control CONSULTANTS TO THE PANEL CINDY BOUILLON-JENSEN, Department of Medical History and Ethics, University of Washington ERNEST DRUCKER, Montefiore Medical Center, New York JOHN GRIGGS, United Hospital Fund, New York

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The Social Impact of Aids in the United States GREGORY HEREK, Department of Psychology, University of California, Davis MARTIN LEVINE, Department of Sociology and Social Psychology, Florida Atlantic University HARRY MARKS, Institute of the History of Medicine, Johns Hopkins University CATHERINE O'NEILL, Legal Action Center, New York RONALD STALL, Center for AIDS Prevention, San Francisco RAND STONEBURNER, New York City Department of Health BARBARA VAUGHAN, Office of Population Studies, Princeton University

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The Social Impact of Aids in the United States Acknowledgments The panel's work was supported primarily by the Public Health Service, U.S. Department of Health and Human Services. We thank the Centers for Disease Control (CDC) for coordinating this support. The Lilly Endowment, Inc., and the Sierra Health Foundation provided funding that enabled the panel to undertake the study of religion and religious groups. We are very grateful to these private foundations for their assistance. First and foremost I thank my fellow panel members, without whose untiring work and much tried patience this book would not have been possible (see Appendix A for biographical sketches). The list below identifies the panel and staff members who prepared the first drafts of each chapter—and sometimes uncounted subsequent drafts—and those who collaborated with ideas. The first authors wrote the substance of the chapters; the collaborators contributed some language and important ideas. The purpose of this list is to give credit to individuals, but of course the responsibility for the entire text rests with the panel. Albert Jonsen and James Trussell, in collaboration with John Gagnon and Shirley Lindenbaum Ronald Bayer, in collaboration with Mark Smith Mark Smith, in collaboration with Deborah Cotton and Jeff Stryker Deborah Cotton and Allan Brandt Albert Jonsen and Earl Shelp Jeff Stryker, Mark Smith, and Earl Shelp

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The Social Impact of Aids in the United States Jeff Stryker David Chambers, in collaboration with Shirley Lindenbaum John Gagnon and Shirley Lindenbaum, in collaboration with Albert Jonsen, Jeff Stryker, and James Trussell The panel benefited from the collaboration and the advice of many scholars and other people deeply involved in the HIV/AIDS epidemic (see Appendix B). We wish to thank all of them for their generous help. The panel appreciates the hard work of the staff of the National Research Council. They were indispensable to the administration, research, and editing that went into this report. We thank Charles F. Turner, who was the parent committee's study director, and Jeff Stryker, the panel study director. Heather G. Miller and Susan L. Coyle of the committee staff provided helpful research assistance in the first phase of the panel's activities. Kirsten Johnson and Tracy Brandt were most efficient research and administrative assistants. In the final drafting of the report, Elaine McGarraugh coordinated everyone else as well as managing innumerable manuscript drafts. Eugenia Grohman and consultant Jean Shirhall were excellent editors, and Susanne Stoiber oversaw the completion of the panel's work. On behalf of the panel, I express my sincere gratitude for the staff's work. Albert R. Jonsen, Chair Panel on Monitoring the Social Impact of the AIDS Epidemic

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The Social Impact of Aids in the United States Contents 1   INTRODUCTION AND SUMMARY   1     Epidemics, Impacts, and Responses   2     General Findings and Conclusions   7     Specific Findings and Conclusions   9     Technical Note   19     References   21 2   THE PRACTICE OF PUBLIC HEALTH   23     Historical Approaches to Disease Control and "Exceptionalism"   25     HIV Testing   27     Reporting and Contact Tracing   30     Quarantine, Isolation, and Criminal Prosecution   34     State and Local Public Health Practice   37     Conclusions   41     Notes   43     References   43 3   HEALTH CARE DELIVERY AND FINANCING   46     The Health Care System as a Service Provider   48     The Health Care System as Employer   55     The Health Care System as a Market   67     Health Care Financing   68     Conclusions   71     Notes   73     References   74

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The Social Impact of Aids in the United States 4   CLINICAL RESEARCH AND DRUG REGULATION   80     Historical Perspective   81     The First Decade of AIDS   90     Current Issues and Practices   97     Conclusions   111     Note   113     References   113 5   RELIGION AND RELIGIOUS GROUPS   117     Religious Doctrines and Traditions   120     Early Response to the Epidemic   129     Official Statements and Local Activities   140     Conclusions   152     References   153 6   VOLUNTARY AND COMMUNITY-BASED ORGANIZATIONS   158     The Origins of Community-Based Service Organizations   159     Who Volunteers and Why   161     Volunteers and What They Contribute   163     The Rise of Advocacy   166     Volunteers and Community-Based Organizations in the Second Decade   168     Conclusions   173     References   173 7   CORRECTIONAL SYSTEMS   176     Who Are the Prisoners   178     The Burden of HIV Disease in Prisons   180     Medical Treatment   188     Transfer and Release Concerns   193     Conclusions   195     Notes   196     References   197 8   PUBLIC POLICIES ON CHILDREN AND FAMILIES   201     Newborns and Children   203     Legal Recognition of Unmarried Couple Relationships   219     Conclusions   236     Notes   238     References   239

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The Social Impact of Aids in the United States 9   THE HIV/AIDS EPIDEMIC IN NEW YORK CITY   243     Course of the Epidemic   245     The Two Epidemics   257     Public Health and Health Care   271     Correctional Systems   280     Impact of HIV/AIDS on Women, Children, and Families   286     Religion: Conflict Over Condoms and AIDS Education for Young People   292     Conclusions   295     Note   296     References   296     APPENDIXES         A: BIOGRAPHICAL SKETCHES   305     B: PARTICIPANTS IN PANEL ACTIVITIES   309     INDEX   313

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