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SEXUAL BEHAVIOR AND I INTRAVENOUS DRUG USE CHARLES F. TURNER, HEATHER G. MILLER, AND LINCOLN E. MOSES, Editors 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. 1989

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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 special competences and with regard for 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 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 the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and upon its own initiative, to identify issues of medical care, research, and education. Dr. Samuel O. Thier is president of the Institute of Medicine. The National Research Council was established 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 of 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. The work that provided the basis for this volume was supported by grants from the Rockefeller Foundation, the Russell Sage Foundation and by a contract with the U.S. Public Health Service. Library of Congress Catalog Card Number 88-43331 ISBN 0-309-03948-7 (paperbound); ~309-03976-2 (hardbound) Copyright ~ 1989 by the National Academy of Sciences Printed in the United States of America First Printing, February 1989 Second Pnnting, August 1989 Third Printing, January 1990 Fourth Printing, February 1990

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Committee on AIDS Research and the Behavioral, Social, ant} Statistical Sciences LEWELLYS F. BARKER (NRC FellowJ, National Research Council and American Red Cross, Washington, D.C. MARSHALL H. BECKER, School of Public Health, University of Michigan ROBERT BORUCH, Departments of Psychology and.Statistics, Northwestern University TRACY L. BRANDT (Administrative SecretaryJ, National Research Council LESTER BRESLOW, Division of Cancer Control, School of Public Health, University of California at Los Angeles J. BROOKS-GUNN, Education Policy and Research Division, Educational Testing Service, Princeton, New Jersey THOMAS J. COATES, Division of General Internal Medicine, Center for AIDS Prevention Services, University of California at San Francisco ROBYN M. DAWES, Department of Social and Decision Sciences, Carnegie Mellon University DON C. DES JARLAIS, New York State Division of Substance Abuse Services, New York City, and Rockefeller University JOHN H. GAGNON, Department of Sociology, State University of New York at Stonybrook ALBERT R. JONSEN, Department of Medical History and Ethics, University of Washington at Seattle SHIRLEY LINDENBAUM, Department of Anthropology, Graduate Faculty, New School for Social Research GARDNER LINDZEY, Center for Advanced Study in the Behavioral Sciences, Stanford, California ROBERT M. MAY, Department of Zoology, University of Oxford JANE MENKEN, Department of Sociology, University of Pennsylvania HEATHER G. MILLER (Senior Research Associate), National Research Council LINCOLN E. MOSES (Chair), Department of Statistics, Stanford University CHARLES F. TURNER (Study Director), National Research Council BAILUS WALKER, School of Public Health, State University of New York at Albany LAURIE SCHWAB ZABIN, Department of Population Dynamics, Johns Hopkins University School of Hygiene and Public Health Pane] on Statistical Issues in AIDS Research JOAN L. ARON, Department of Population Dynamics, Johns Hopkins University School of Hygiene and Public Health LYNNE BILLARD, Department of Statistics, University of Georgia RON S. BROOKMEYER, Department of Biostatistics, Johns Hopkins University School of Hygiene and Public Health JANE MENKEN (Chair), Department of Sociology, University of Pennsylvania LINCOLN E. MOSES, Department of Statistics, Stanford University BRUCE D. SPENCER, Department of Statistics, Northwestern University MICHAEL A. STOTO, Division of Health Promotion and Disease Prevention, Institute of Medicine CHARLES F. TURNER (Study Director), National Research Council . . . 111

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Pane} on AIDS ant} IV Drug Use LEWELLYS F. BARKER (NRC Fellow), National Research Council and American Red Cross, Washington, D.C. LAWRENCE S. BROWN, JR. Addiction Research and Treatment Corporation, and Department of Medicine, Harlem Hospital, New York City DON C. DES JARLAIS (ChairJ, New York State Division of Substance Abuse Services, New York City, and Rockefeller University SAMUEL R. FRIEDMAN, Narcotics and Drug Research, Inc., New York City ROBERT L. HUBBARD, Center for Social Research and Policy Analysis, Research Triangle Park, North Carolina SHIRLEY LINDENBAUM, Department of Anthropology, Graduate Faculty, New School for Social Research HEATHER G. MILLER (Senior Research Associate), National Research Council JOHN A. NEWMEYER, Haight-Ashbury Free Medical Clinic, San Francisco Liaison Representatives, U.S. Public Health Service WENDY BALDWIN, National Institute of Child Health and Human Development WILLIAM W. DARROW, Centers for Disease Control LLOYD KOLBE (ChairJ, Centers for Disease Control KEVIN O'REILLY, Centers for Disease Control MARK ROSENBERG, Centers for Disease Control STANLEY F. SCHNEIDER, National Institute of Mental Health ERNESTINE VANDERVEEN, National Institute on Drug Abuse RONALD W. WILSON, National Center for Health Statistics, Centers for Disease Control Consultants MARION EATON, Program in Mathematical Methods in Educational Research, Stanford University ROBERT E. FAY, National Research Council SUSHAMA GUNJAL, National Research Council SAHR JOHN KPUNDEH, Department of Political Science, Howard University BARBARA BRYAN LOGAN, College of Nursing, University of Illinois at Chicago DEBORAH MALOFF, Hinsdale, Illinois JOHN L. MARTIN, School of Public Health, Columbia University LEAH MAZADE, National Academy Press LAURA RUDKIN-MINIOT, Department of Sociology, Princeton University STEPHEN SAUNDERS, Department of Psychology, Northwestern University JEFF STRYKER, School of Public Health, University of Michigan 1V

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Preface Statistics on the spread of the human immunodeficiency virus (HIV) and, consequently, of acquired immune deficiency syndrome (AIDS) tell a grim tale. As of November 14, 198S, 78,312 cases of AIDS had been reported in the United States, and 44,071 people had died as a result of the disease. Moreover, there is no end in sight: projections of the number of AIDS cases and (leaths show large increases in the years to come, and it is estimated that as many as 54,000 Americans may die from AIDS during 1991 alone. Yet HIV infection/AIDS is more than a biomedical phenomenon. It is also a social phenomenon an epidemic rooted firmly, some fear intractably, in human behavior. The vital need for data to help in designing, implementing, ant! evaluating programs to curb the epidemic's spread transcends numerical tallies of people infected and lives lost. Understanding the human behaviors that transmit HIV infection (and thereby AIDS), as well as the social contexts in which those behaviors occur, calls for action by the disciplines that constitute the behavioral, social, and statistical sciences. The creation of this committee highlights the central importance of behavior in the HIV/AIDS epidemic. Because HIV/AIDS is a sexually transmitted disease, it must be opposed with behavioral weapons education, counseling, and persuasion, among others a fact that will not change even when effective therapies or vaccines are discovered. In this respect, the HIV/AIDS epidemic is similar to outbreaks of other, nonfatal sexually transmitted diseases. For example, gonorrhea and syphilis persist in the United States, despite/

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Vi ~ PREFACE the availability for the past 40 years of drugs that are effective against them. The challenges facing us are great, especially given the severity of the AIDS epidemic. In its charge, the Committee on AIDS Research and the Behav- ioral, Social, and Statistical Sciences was asked to . describe what is known about the spread of HIV ant! AIDS in the United States, with special attention to the quality of the information at hand ant! to the kind of additional information that is needed; identify critical populations and inclicate objectives and tasks related to them; . describe existing research findings in the behavioral and social sciences that should be useful in planning and choosing among interventions designed to control the spread of HIV infection; . describe existing research on (a) interventions intended to facilitate behavior changes and (b) ways to evaluate their effectiveness; and . identify new research that should be undertaken to de- sign, implement, and evaluate better interventions in the future to control the spread of HTV. This three-part report is the committee's answer to that charge. Because it is important to know the prevalence and incidence of HIV infection in planning strategies to control its spread, the first part, "Understanding the Spread of HIV Infection," begins with a review of the extent of HIV infection within the U.S. population today. The two subsequent chapters discuss the sexual ant! IV drug- use behaviors that contribute to transmission of the virus and thus alter the prevalence and incidence of HIV in the United States. The second part of the report, "Intervening to Limit the Spread of HIV Infection," details principles of behavioral change that might prove useful in designing and implementing intervention strategies to slow disease transmission. A separate chapter discusses methods for measuring the effectiveness of such interventions. The third part, "Impediments to Research and Intervention," reviews the barriers that may compromise the nation's ability to control the spread of the disease. One chapter considers barriers to research efforts; another chapter discusses obstacles that threaten to hinder effective AIDS prevention.

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P REFACE ~ vii As biomedical scientists continue to search for effective therapies ant! vaccines to combat HIV/AIDS, behavioral, social, and statistical scientists must invest their energies in understanding and affecting the behaviors that transmit the virus. It is well to remember that, as we write, HIV continues to spread. As part of the nation's response to this complex disease and its devastating consequences for indivicluais ant! for society as a whole, we confront the urgent task of turning ignorance into understanding anc3 understanding into action. Charles Turner, Heather Miller, and Lincoln Moses Editors

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ACknOWIe-]gmenTS r: During the course of this stiffly, our committee has been assisted by many scientists who took time to share their insights and expertise. Without this generous assistance, the committee would not have been able to complete its task. The birth of this study benefited from the support and goodwill of many people. At critical moments in the study's gestation, Samuel Thier of the Institute of Medicine and our former colleagues David GosTin and Roy WidJus interceded to ensure that the project was not stillborn. Kenneth Prewitt of the Rockefeller Foundation and Eric Wanner and Peter cle Janosi of the Russell Sage Foundation generously and quickly provided funds for the committee's start- up costs. The Public Health Service provided subsequent financial support for the undertaking, and their liaison representatives maple important contributions to the committee's work. To all those who have assisted us in our work, the committee extends its sincere thanks and appreciation. NOTE ON AUTHORSHIP The list below identifies the persons who shared the responsibility for preparing the first draft of each chapter in this volume. The committee reviewed all contributions, and they have been revised and edited in light of committee reactions and the comments of outside reviewers. The purpose of the following alphabetical list, therefore, is to give credit to individuals but not to assign final responsibility for the publisher! text. It should also be noted that, although the i: x o

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X ~ ACKNOWLEDGMENTS list covers major sections of this volume, these sections frequently contain additional paragraphs or pages from other hands. SUMMARY: This is the collective product of the deliberations of the entire committee, and it presents our recommendations. CHAPTER 1: Aron, BilIard, Brookmeyer, Menken, Moses, Spencer, Stoto, Turner CHAPTER 2: Gagnon, Lirl~lenbaum, Martin, May, Menken, Turner, Zabin CHAPTER 3: Barker, Brown, Des JarIais, FYiedman, Hubbard, Lindenbaum, Miller, Newmeyer, Stryker CHAPTER 4: Becker, Brooks-Gunn, Coates, Dawes, Lindenbaum, Miller, Zabin CHAPTER 5: Boruch, Dawes, Miller, Moses CHAPTER 6: Miller, Turner CHAPTER 7: Coates, Dawes, Jonsen, Miller, Turner, Walker, Zabin Primary responsibility for the revision and editing of this volume was shared by Charles Turner, Heather Miller, and LincoIn Moses.

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Contents SUMMARY . . . I UNDERSTANDING THE SPREAD OF HIV INFECTION ..1 1 MONITORING THE EPIDEMIC 31 Prevalence and Incidence of HIV Infection, 33 The 1989 HIV Surveillance System, 50 Estimates of National HIV Prevalence and Inciclence, 62 Conclusion, 66 References, 70 SEXUAL BEHAVIOR A N D A ~ D S .......................... Status of the Research Field, 73 Needed Data, 75 The Kinsey StucTies, 79 bends in Heterosexual Behavior in Adolesence and Young Adulthood, 88 Adult Heterosexual Behaviors, 102 Trends in Sexual Behavior Among Persons of the Same Gender, 113 Female Prostitution, 136 Methodological Considerations in Surveys of Sexual Behavior, 147 X1 . . . .... 73

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Xii ~ CONTENTS Anthropology's Perspective on Human Sexual Behavior, 157 Conclusions and Recommendations, 164 Bibliography, 169 3 AIDS AND {V DRUG USE... Drug-Use Behaviors that Transmit HTV, 189 Risk Reduction Among {V Drug Users, 202 Conducting Research on {V Drug Use, 214 Measuring the Scope of the Problem, 225 Conclusion, 240 Bibliography, 240 II INTERVENING TO LIMIT THE SPREAD OF HIV INFECTION 4 FACILITATING CHANGE IN HEALTH BEHAVIORS... Education Programs, 262 Motivating and Sustaining Behavioral Change, 276 Social Support for Behavioral Change, 290 The Role of Planned Variations and Evaluation, 307 References, 308 .. 186 259 5 EVALUATING THE EFFECTS OF AIDS INTERVENTIONS 316 Dimensions of Evaluation, 317 Randomized Fielcl Experiments, 327 Special Concerns of Evaluation in the Context of HIV Infection and AIDS, 337 Implementing Good Evaluations, 347 Bibliography, 350 III IMPEDIMENTS TO RESEARCH AND INTERVENTION 6 BARRIERS TO RESEARCH Collaboration in Research, 364 Federal Research Personnel, 367 References, 371 7 SOCIAL BARRIERS TO AIDS PREVENTION .... Social Response to Epidemics, 372 Communicating About Sex, 375 Barriers to Action: Recent Examples, 376 Historical Lessons, 388 References, 399 .359 372

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CONTENTS I Xiii APPENDIXES A. RECOMMENDATIONS ...... B. SUPPLEMENTAL DATA .... .............. 405 412 BACKGROUND PAPERS On the Accuracy of Current Estimates of the Numbers of Intravenous Drug Users Bruce D. Spencer............................................ Monitoring the Spread of HIV Infection Charles F. Turner and Robert E. Fay... Cost-Effectiveness Analysis of AIDS Prevention Programs: Concepts, Complications, ant! Illustrations Milton C. Weinstein, John D. Graham, Joanna E. Siegel, and Harvey V. Fineberg........... Sexuality Across the Life Course in the United States John H. Gagnon.............................................. Sex Counts: A Methodological Critique of Hite's Women and Love Tom W. Smith................................ Mends in Premarital Sexual Behavior Albert D. Klassen, Colin ]. Williams. Eugene E. Levitt, Laura Ru~kin-Miniot, Heather G. Miller, and Sushama Gunjal INDEX . 429 ....... 447 . 471 .500 . 537 .. 548 569

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SEXUAL BEHAVIOR AND INTRAVENOUS DRUG USE

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