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AIDS The Second Decade Heather G. Miller, Charles F. Turner, and Lincoln E. Moses, Editors COMMITTEE ON AIDS RESEARCH AND THE BEHAVIORAL, SOCIAL, AND STATISTICAL SCIENCES COMMISSION ON THE BEHAVIORAL AND SOCIAL SCIENCES AND EDUCATION NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS WASHINGTON, D.C. 1990
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 detained 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 chaurnan and vice-chair~nan, respectively, of the National Research Council. The work that provided the basis for this volume was supported by a contract from the U.S. Public Health Service. Library of Congress Catalog Card Number 90-50389 International Standard Book Number 0-309-04278-X, cloth International Standard Book Number 0-309-04287-9, paper Copyright @)1990 by the National Academy of Sciences Printed in the United States of America Ant Pang, Joy 199O Second Pnning, December 1992 Third Printing, May 1993
Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences MARSHALL H. BECKER, School of Public Health, University of Michigan ROBERT F. BORUCH, Graduate School of Education and Department of Statistics, University of Pennsylvania THOMAS J. COATES, Division of General Internal Medicine, and Center for AIDS Prevention Studies, University of California at San Francisco RAMON C. CORTINES,* Superintendent of Schools, Sari Francisco Unified School District ROBYN M. DAWES, Department of Social and Decision Sciences, Camegie Mellon University DON C. DES JARLAIS, Chemical Dependency Institute, Beth Israel Medical Center, New York, and Mount Sinai School of Medicine JOHN H. GAGNON, Department of Sociology, State University of New York at Stony Brook ALBERT R. JONSEN, Department of Medical History and Ethics, University of Washington at Seattle SHIRLEY LINDENBAUM, Department of Anthropology, Graduate Center, City University of New York JANE MENKEN (Vice Chair), Department of Sociology, and Population Studies Center, University of Pennsylvania LINCOLN E. MOSES (ChairJ, Department of Statistics, Stanford University CLADD E. STEVENS, The New York Blood Center BAILUS WALKER, School of Public Health, State University of New York at Albany National Research Council Staff TRACY L. BRANDT, Research Assistant, Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences SUSAN L. COYLE, Study Director, Panel on the Evaluation of AIDS Interventions KIRSTEN J. JOHNSON, Sr. Project Assistant, Panel on the Evaluation of AIDS Interventions HEATHER G. MILLER, Study Director, Panel on AIDS Interventions and Research KAREN E. ORLANDO, Sr. Project Assistant, Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences JEFFREY S. STROKER, Study Director, Panel on Monitoring the Social Impact of the AIDS Epidemic CHARLES F. TURNER, Director, Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences * Served through September 1, 1989. . . .
Panel on AIDS Interventions and Research MARSHALL H. BECKER (Chair,, School of Public Health, University of Michigan PHILIP W. BLUMSTEIN, Department of Sociology, University of Washington at Seattle MARGARET A. CHESNEY, Department of Epidemiology and Biostatistics, and Center for AIDS Prevention Studies, University of California at San . . ~ranclsco ANKE A. EHRHARDT, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, Columbia University MINDY T. FULLILOVE, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, Columbia University KAREN HEIN, Division of Adolescent Medicine, Albert Einstein College of Medicine, and Montefiore Medical Center, Bronx, New York JANE ALLYN PILIAVIN, Department of Sociology, University of Wisconsin at Madison JAMES L. SORENSEN, Substance Abuse Services, San Francisco General Hospital, and University of California at San Francisco REED V. TUCKSON, March of Dimes Birth Defects Foundation, White Plains, New York JAMES A. WILEY, Survey Research Center, University of California at Berkeley Consultants JANE C. BALIN, Department of Sociology, University of Pennsylvania MIMI CANTWELL, National Academy Press WENDY CHAVKIN, School of Public Health, Columbia University, and Chemical Dependency Institute, Beth Israel Medical Center, New York JUDITH B. COHEN, San Francisco General Hospital, and University of California at San Francisco SUSHAMA GUNJAL, National Research Council staff SAHR J. KPUNDEH, Department of Political Science, Howard University ANDREW S. LONDON, Department of Sociology, and Population Studies Center, University of Pennsylvania LEAH MAZADE, National Academy Press BARBARA S. MENSCH, School of Public Health, Columbia University LISA A. RATMANSKY, Department of Sociology, University of Pennsylvania LAURA RUDKIN-MINIOT, Department of Sociology, Princeton University PEARL T.C.Y. TOY, San Francisco General Hospital, and University of California at San Francisco DOOLEY WORTH, Department of Epidemiology and Social Medicine, Montefiore Medical Center, Bronx, New York 1V
Liaison Representatives, U.S. Public Health Service LINDA ALEXANDER, Walter Reed Army Institute for Research ZILI AMSEL, National Institute on Drug Abuse WENDY BALDWIN, National Institute of Child Health and Human Development G. STEPHEN BOWEN, Centers for Disease Control DAVID F. BROWNELL, Centers for Disease Control VIRGINIA CAIN, National Institute of Child Health and Human Development ALLAN W. CZARRA, National Heart, Lung, and Blood Institute WILLIAM W. DARROW, Centers for Disease Control TIMOTHY J. DONDERO, JR., Centers for Disease Control ANITA EICHLER, National Institute of Mental Health JACOB A. GAYLE, Centers for Disease Control MICHELE KIELY, National Institute of Allergy and Infectious Diseases LLOYD J. KOLBE, Centers for Disease Control LYNN LEVIN, Walter Reed Anny Institute for Research SAMUEL C. MATHENY, Health Resources and Services Administration KEVIN O 'REILLY, Centers for Disease Control MARCIA ORY, National Institute on Aging CHRISTINE PARKER, National Heart, Lung, and Blood Institute AMY R. SHEON, National Institute of Allergy and Infectious Diseases ELLEN STOVER, National Institute of Mental Health MATILDA WHITE RILEY, National Institute on Aging RONALD W. Watson, National Center for Health Statistics, Centers for Disease Control
Preface It is sometimes difficult today to remember that only 10 years ago the acquired immune deficiency syndrome (AIDS) was unknown. Dunng the first decade of this epidemic, more than 65,000 people died from this disease in the United States, and many more were infected with the human immunodeficiency virus (HIV), which causes AIDS. We do not know what effects this epidemic will ultimately have. The available evidence indicates, however, that the swathe cut by this disease is widening and, despite considerable efforts to retard the spread of HIV infection, it is likely that morbidity and mortality from HIV infection will continue throughout the 1990s. Dunng the first decade of this epidemic our nation has faced enormous challenges. Some of those challenges have been met. The development of tests to detect antibodies to HIV, for example, led to a substantial reduction in risk associated with transfusions and blood products. Many challenges, however, remain unmet. One of the most serious and en- dunng obstacles arises from the thin substrate of facts pertaining to the prevalence of HIV infection in the United States and to the effectiveness of alternative strategies to prevent further spread of HIV in our popula- tion. The nation's future success in curbing the spread of the virus and reducing the toll exacted by this disease will depend to a great extent on the nation's commitment to empirical efforts that will improve this knowledge base. With this second report, our committee continues the work it began in 1987 to monitor the AIDS epidemic and to investigate issues related to preventing the transmission of HIV. The committee's deliberations on the issues discussed in this report began in the spring of 1989 at the behest of a consortium of Public Health Service agencies that have supported the work of the committee since its inception. A specially appointed Panel on AIDS Interventions and Research assisted in this latest effort, as did many other individuals too numerous to mention here. All gave generously of . . V11
Viii ~ PREFACE their time and knowledge, for which the committee expresses its sincere gratitude. Establishing the scope of a report such as this is always difficult. There is often tension between keeping the text concise and straightfor- ward and providing sufficient background material to make the issues comprehensible to a broad range of readers. This report attempts to tread a fine tine between satisfying the needs of readers who are expert in at least one area and those who are being introduced to new topics. The committee recognizes that it cannot meet the needs of all readers. For some, the material presented here will be too basic. For those who are less familiar with these issues, however, it is our hope that this report will provide a useful introduction. The topics addressed in the report span a range of substantive ar- eas, from improving the quality of survey data on behaviors associated with HIV transmission to modifying the behavior of blood donors. The report also considers two specific populations in whom much interest has been centered: adolescents and female prostitutes. The inclusion of these populations in separate chapters of this report does not signify that either group is thought to be a major source of infection. Rather, in the case of adolescents, the committee sought to highlight the opportu- nity to limit the spread of infection in this population and to encourage health-promoting behaviors by young people who have, in many cases, only begun to experiment with risk-associated behaviors. In the case of female prostitutes, the commiaee's work serves another purpose: to lay to rest concerns that have lingered since the beginning of the epidemic that prostitutes were a major bridge for HIV transmission to the larger heterosexual population. Epidemiologic evidence indicates that HIV in- fection is not an occupational disease for this group and that it is unlikely that prostitutes will serve as a major conduit of infection. As is the case with all women, however, their risk of becoming infected has increased over the past few years. As the patterns of MV infection have undergone subtle shifts, there arises a need to focus more attention on the risks that women in general face. After a decade of struggle against AIDS, the logical question is: Where do we go from here? Some individuals claim that the epidemic has peaked and no longer needs the attention and resources that have been directed toward it in the past. Others say that there are more press- ing problems facing our nation. The committee, although recognizing the frustration that often underlies such viewpoints, finds little credible evidence that the end of this epidemic is in sight. The picture for the near future is one of a continuing toll of sickness and death. Behavioral
PREFACE ~ iX change continues to be our primary weapon in retarding the spread of HIV. Amassing the knowledge needed to better understand and facilitate behavioral change will require a long-term commitment to rigorous scien- tific investigation. That commitment must be made and maintainedto forestall the bleak prospect of a third decade of this epidemic that is little different from the last. HEATHER G. MILLER, STUDY Director CHARLES F. TURNER, Director LINCOLN E. MOSES, Chair Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences
Acknowledgments During the course of this study, the committee was assisted by a number of scientists who took time to share their insights and expertise. To those who assisted us in our work, the committee extends its sincere thanks and appreciation. The committee's work has been supported by the U.S. Public Health Service, and by the Rockefeller, Russell Sage, and Sierra Foundations. Note on Contributions This report is the collective product of the committee, and it was prepared with the assistance of the committee's Pane] on AIDS Interventions and Research. The content of this report reflects the deliberations of the committee, and the report presents the committee's recommendations. The list below identifies the persons who shared major responsibility for preparing initial drafts of materials for each chapter in this report. The committee reviewed all contributions, and they have been revised and edited in light of the committee's discussions 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 published text. It should also be noted that, although the list covers major sections of this volume, these sections frequently contain additional paragraphs or pages from other hands. SUMMARY: Coyle, Miller, Tumer CHAPTER 1: Coates, Des Jariais, Miller, Moses, Turner, Worth CHAPTER 2: Chavkin, Coates, Des lariats, Ehrhardt, Miller, Stryker, Worth CHAPTER 3: Des lariats, Ehrhardt, Fullilove, Hein, Menken, Mensch, Miller, Tumer CHAPTER 4: Cohen, Coyle CHAPTER 5: Chesney, Miller, Piliavin, Stevens, Toy CHAPTER 6: Blumstein, Dawes, Lindenbaum, Rudkin-Miniot, Sorensen, Turner, Wiley x
Contents SUMMARY ...... 1 THE AIDS EPIDEMIC IN THE SECOND DECADE Introduction, 39 Changing Epidemiology of AIDS in the United States, 43 A Picture of Emerging Risk: AIDS Among Women, 48 Tracking the Epidemic: Data Needs, 67 References, 72 2 PREVENTION: THE CONTINUING CHALLENGE Impact of Interventions Among Gay Men, 82 Interventions for Intravenous Drug Users, 89 AIDS Prevention Strategies for Women, 92 Maintaining Risk Reduction Behavior, 108 Impediments to Improved Intervention, 114 References, 127 3 AIDS AND ADOLESCENTS..... Epidemiology of AIDS and HIV Among Adolescents, 148 Behaviors That Put Adolescents at Risk, 167 Intervening to Prevent Further Spread of Infection, 201 What Do Teens Know About AIDS? 208 Reaching Adolescents, 213 Doing Better in the Second Decade, 232 References, 234 X1 38 ..81 .147
Xii ~ CONTENTS 4 INTERVENTIONS FOR FEMALE PROSTITUTES 253 Epidemiology of AIDS and HIV Among Prostitutes, 254 Patterns of Prostitution, 263 Intervention Programs, 270 Impediments to More Effective Interventions, 276 Future Needs and Options for HIV Prevention, 281 References, 283 5 AIDS AND THE BLOOD SUPPLY 289 Brief History and Overview of the Problem, 291 The Blood Collection System in the United States, 292 Maintaining an Adequate Supply of Safe Blood, 297 Protecting the Blood Supply From HIV Infection, 317 Research to Improve the Existing System, 327 Reducing the Risk of HIV Infection Through Appropriate Use of Transfused Blood and Blood Components, 331 References, 344 6 METHODOLOGICAL ISSUES IN AIDS SURVEYS 359 Fallibility of Measurement in Other Sciences, 362 Recruitment of Respondents in Sex and Seroprevalence Surveys, 365 Nonsampling Issues in AIDS Surveys, 391 Emp~ncal Studies of Sexual Behaviors, 401 Empirical Studies of Drug-Using Behaviors, 420 Summary of Findings, 428 Improving Validity and Reliability, 430 Ethnographic Studies, 440 Recommendations, 449 References, 450 APPENDIX ........... INDEX ...... ....473 ......... 477
AIDS The Second Decade