AIDS and Behavior

An Integrated Approach

Judith D. Auerbach, Christina Wypijewska, and H. Keith H. Brodie, Editors

Committee on Substance Abuse and Mental Health Issues in AIDS Research

Division of Biobehavioral Sciences and Mental Disorders

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.
1994



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Aids and Behavior: An Integrated Approach AIDS and Behavior An Integrated Approach Judith D. Auerbach, Christina Wypijewska, and H. Keith H. Brodie, Editors Committee on Substance Abuse and Mental Health Issues in AIDS Research Division of Biobehavioral Sciences and Mental Disorders INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1994

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Aids and Behavior: An Integrated Approach 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 competencies 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 Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support of this project was provided by the National Institute on Alcohol Abuse and Alcoholism, the National Institute on Drug Abuse, and the National Institute of Mental Health. Library of Congress Cataloging-in-Publication Data Copyright 1994 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on relief carving from ancient Greece, now held by the Staalichemuseen in Berlin.

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Aids and Behavior: An Integrated Approach COMMITTEE ON SUBSTANCE ABUSE AND MENTAL HEALTH ISSUES IN AIDS RESEARCH H. Keith H. Brodie,*Chair, President Emeritus and James B. Duke Professor of Psychiatry, and Professor of Law, Duke University, Durham, North Carolina Hortensia de los Angeles Amaro, Professor, Department of Social and Behavioral Sciences, Boston University School of Public Health, Boston, Massachusetts Ira B. Black, Professor and Chair, Department of Neuroscience and Cell Biology, University of Medicine and Dentistry of New Jersey, The Robert Wood Johnson Medical School, Piscataway, New Jersey Colleen Conway-Welch, Professor and Dean, Vanderbilt University School of Nursing, Nashville, Tennessee Curtis L. Decker, Executive Director, National Association of Protection and Advocacy Systems, Inc., Washington, D.C. Baruch Fischhoff,* Professor of Social and Decision Sciences and of Engineering and Public Policy, Carnegie Mellon University, Pittsburgh, Pennsylvania Mindy Thompson Fullilove, Associate Professor of Clinical Psychiatry and Public Health, Columbia University, and Research Psychiatrist, New York State Psychiatric Institute Community Research Group, New York, New York Kristine M. Gebbie,*† Former Secretary, State of Washington Department of Health, Olympia, Washington Margaret A. Hamburg, Health Commissioner, New York City Department of Health, New York, New York James G. Haughton,* Senior Health Services Policy Advisor, Los Angeles County Department of Health Services, Los Angeles, California James A. Inciardi, Professor and Director, Center for Drug and Alcohol Studies, University of Delaware, Newark, Delaware Ernest H. Johnson,± Associate Professor and Director of Behavioral Medicine, Morehouse School of Medicine, Atlanta, Georgia *   IOM Member †   Resigned August 1, 1993, upon appointment as National AIDS Policy Coordinator, The White House ±   Served through July 15, 1993

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Aids and Behavior: An Integrated Approach Edward H. Kaplan, Professor of Management Sciences, Yale School of Organization and Management, and Professor of Medicine, Yale School of Medicine, New Haven, Connecticut Richard W. Price, Professor and Head, Department of Neurology, University of Minnesota, Minneapolis, Minnesota Alfred Saah, Associate Professor of Epidemiology, School of Hygiene and Public Health, and Associate Professor of Medicine, School of Medicine, Johns Hopkins University, Baltimore, Maryland Peter Selwyn, Associate Director, AIDS Program, and Associate Professor of Internal Medicine, Epidemiology, and Public Health, Yale University School of Medicine, New Haven, Connecticut LIAISON TO THE COMMITTEE Susan Folkman, Co-Director, Center for AIDS Prevention Studies, and Professor of Medicine, University of California, San Francisco, San Francisco, California STUDY STAFF Judith D. Auerbach, Study Director Christina Wypijewska, Project Officer Karen Autrey, Project Assistant Holly Dawkins, Research Assistant Robert Cook-Deegan, Director, Division of Biobehavioral Sciences and Mental Disorders Constance M. Pechura, Associate Director, Division of Biobehavioral Sciences and Mental Disorders OTHER IOM STAFF Michael A. Stoto, Director, Division of Health Promotion and Disease Prevention Leslie Hardy, Study Director, AIDS Activities Gail Spears, Administrative Assistant, Division of Biobehavioral Sciences and Mental Disorders

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Aids and Behavior: An Integrated Approach Preface In its FY 1992 appropriations bill for the Departments of Labor, Health and Human Services, and Education (P.L. 102–170), Congress called for an assessment of the AIDS research programs of the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA). This action resulted in part from a long-standing concern among members of Congress, the behavioral and social science community, and AIDS advocates that insufficient attention was being paid by federal research agencies to the potential contributions of behavioral and social science research to AIDS prevention efforts. Congress specifically directed ADAMHA to contract with the Institute of Medicine (IOM) to undertake a study that was to "include, but not be limited to an assessment of the mission, programs, management, and funding levels" of the ADAMHA AIDS research and services programs. The mandate specifically required that the evaluation of ADAMHA's AIDS programs be similar to the previous IOM assessment (1991a) of the AIDS programs of the National Institutes of Health (NIH) and that it (1) assess the balance between biomedical and behavioral research in the AIDS research programs, (2) pay particular attention to behavioral-science-based AIDS prevention efforts at ADAMHA, and (3) assess the links between AIDS research and services programs in ADAMHA (Senate Report 102–104:154). In order to conduct the study, IOM convened the Committee on Substance Abuse and Mental Health Issues in AIDS Research, which was composed of fourteen members with expertise in clinical

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Aids and Behavior: An Integrated Approach medicine, epidemiology, neurology, neuroscience, nursing, operations research, psychiatry, psychology, public advocacy, public health, and sociology. Many committee members also had extensive experience in the areas of AIDS, mental health and illness, and substance abuse. Once the study was under way, however, two events occurred that had a direct effect on the ability of the committee to conduct the project as mandated. First, after a year of debate and consideration, Congress passed the ADAMHA Reorganization Act of 1992, which, effective October 1, 1992 (the day after the IOM contract began), restructured ADAMHA by separating out its research and services functions. The three research institutes—National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute on Drug Abuse (NIDA), and National Institute of Mental Health (NIMH)—were transferred to NIH. The two services offices—Office of Substance Abuse Prevention (OSAP) and Office of Treatment Improvement (OTI)—were renamed Centers (CSAP and CSAT) and, along with a newly created Center for Mental Health Services (CMHS), were reconstituted as the Substance Abuse and Mental Health Services Administration (SAMHSA). As a result of the reorganization of ADAMHA, the IOM study was refocused to assess the AIDS research portfolios of NIAAA, NIDA, and NIMH with respect to balance between biomedical and behavioral research, attention to behavioral preventive interventions, and the relationship between research at the institutes and AIDS-related mental health and substance abuse services programs at SAMHSA and elsewhere in the Public Health Service (PHS). The second event of consequence to this study was the passage of the NIH Revitalization Amendments (P.L. 103–43) on July 10, 1993. That bill substantially increased the authority of the NIH Office of AIDS Research (OAR) to determine budgeting and, to some degree, program priorities for AIDS research at all NIH institutes effective FY 1994 (October 1, 1993). Because the former ADAMHA institutes had become part of NIH, the "mission, program management, and funding levels" of their AIDS portfolio were affected by the new OAR authority during the course of this study. Together, the changes at ADAMHA and NIH produced a set of difficulties not only for the institutes themselves—which were forced to operate for several years in a climate of uncertainty—but also for the study committee, which had to deal with a "moving target" throughout the course of its efforts. Although these

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Aids and Behavior: An Integrated Approach legislative changes were not intended to be the focus of the study, the committee decided that their consequences for the AIDS programs of NIAAA, NIDA, and NIMH could not be ignored. Therefore, the implications of this set of circumstances for both the institutes' programs and the committee's work are noted, where relevant, throughout this report. After revising the contract to reflect these structural changes, the charge to the committee became to assess: (1) the scope and content of each institute's AIDS research program activities; (2) the relationship between their research and the services-oriented programs at SAMHSA, Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA); (3) the balance among various research categories (e.g., biomedical, neuroscientific, neuropsychiatric, and behavioral research) and research mechanisms; (4) the role of behavioral-science-based preventive interventions in the institutes' research programs; (5) the role of the public and field opinion in influencing the direction of AIDS research; (6) the adequacy of the administrative structure to support the institutes' AIDS programs; and (7) the adequacy of interagency coordination of AIDS activities. In order to address the various elements of the study charge, the committee and the study staff engaged in a range of data collection activities. These included: creating an electronic database of abstracts of all AIDS grants funded by the three institutes between FY 1983 and FY 1992; reviewing strategic planning, conference summary, and other relevant documents related to their AIDS programs; conducting interviews with federal agency staff, external researchers, AIDS advocates, and other interested persons; visiting four institute-funded AIDS research centers; holding a public meeting; and conducting widespread literature searches. These diverse methods yielded a wealth of information and insights into the accomplishments and the shortcomings of the institutes' AIDS programs vis-à-vis the epidemic. The resulting report is divided into two parts. Part I, "Research Findings and Opportunities," presents an overview of findings from neurobiological, psychological, and social science research related to the substance use, sexual behavior, and mental health aspects of HIV. Much, but not all, of this research has been supported by NIAAA, NIDA, and NIMH. These findings provide a useful backdrop against which to assess the AIDS programs of the institutes, and they help to point out future directions for AIDS research. Moreover, the committee felt it was important to identify the scientific contributions of the former ADAMHA institutes as they

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Aids and Behavior: An Integrated Approach integrate into the larger context of NIH and its AIDS research agenda. Part II, "Managing the AIDS Research Programs at NIAAA, NIDA, and NIMH," provides information about the context in which the institutes" AIDS programs have been operating and presents the committee's assessment of their actual AIDS programs. Throughout the report, the committee makes a number of recommendations related to advancing the scientific agenda and improving the management of AIDS research at NIAAA, NIDA, and NIMH. The committee wishes to note here that these recommendations are not prioritized or ranked; rather, they follow the order of the text in each chapter. Furthermore, because the three institutes were reviewed simultaneously, the recommendations reflect both their unique and their overlapping missions. Although this report contains a number of important findings and recommendations, the committee wishes to stress that many of the scientific fields relevant to this study, such as neuro-AIDS, behavioral epidemiology, and qualitative sociology, are still in the early stages of their development and application. The AIDS epidemic requires better integration of these basic biological, psychological, and social science perspectives in order to achieve the complex understanding that will lead to more appropriate and effective AIDS prevention and intervention efforts. H. Keith H. Brodie, Chair Judith D. Auerbach, Study Director

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Aids and Behavior: An Integrated Approach Acknowledgments The committee's efforts were enabled by the extraordinary work of an excellent project staff under the insightful leadership of Judy Auerbach. We are indebted to Christina Wypijewska for her excellent skills in collecting, analyzing, and presenting a range of information and for her oral and written contributions to the structure and substance of the report. Holly Dawkins brought notable research skills to our efforts, including intensive literature searches and the retrieval of numerous documents from the institutes under review and elsewhere. Karen Autrey provided the committee with extraordinary attention to the logistics of our meetings and to the production of the report, including the documentation of all of our references. Constance Pechura, Robert Cook-Deegan, Mike Stoto, and Leslie Hardy, all members of the IOM staff, contributed constructively to our committee's deliberations and provided necessary guidance in informing the committee of our responsibilities in developing a report worthy of publication. The committee also benefitted from excellent background research provided by Robert Walkington and Beth Kosiak. Additional thanks are owed to Linda Humphrey for carefully editing and improving the structure of many sections of the report, to Mike Edington for coordinating editing and publication, to Claudia Carl for coordinating the review process, to Nina Spruill for guiding the budget, and to Gail Spears for providing a range of administrative assistance. We are also indebted to the many federal agency and congressional

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Aids and Behavior: An Integrated Approach staff, external researchers, AIDS advocates, and representatives of other interested groups who provided input into the committee's deliberations. These individuals are acknowledged by name in Appendix C. One of these people, however, deserves special mention. William A. Bailey, a legislative affairs officer for the American Psychological Association, contributed greatly to this study, by lobbying Congress to mandate the IOM examination of the AIDS programs at the former ADAMHA, by presenting memorable testimony at the committee's public meeting, and by facilitating communication among the committee, the AIDS research and advocacy communities, and the federal government. Bill was a tireless advocate for AIDS prevention, a generous commitment from someone already afflicted with the disease. AIDS claimed Bill's life on April 23, 1994. The committee notes his passing with sadness and remembers his work with thanks. Finally, the committee wishes to express its deep appreciation for the leadership, insight, and extraordinary diligence of our project director, Judy Auerbach, who instilled in us all a commitment to produce a report of which we could be proud. In addition to writing significant sections herself, she brought out our best efforts and was consistently able to produce the information we required to make this report responsive to our charge and, we hope, helpful to the field.

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Aids and Behavior: An Integrated Approach Contents EXECUTIVE SUMMARY   1 1   INTRODUCTION   39 PART I RESEARCH FINDINGS AND OPPORTUNITIE: 2   UNDERSTANDING HIV TRANSMISSION   47     Sexual Transmission   47     HIV Risk and Injection Drug Use   53     Crack Cocaine and HIV Risk: The Intersection of Drug Use and Sexual Behavior   59     Alcohol Use and Sexual Transmission   63     Monitoring the Epidemic   66     Prevalence and Incidence of HIV Infection   69     Factors Influencing the Epidemic's Course: Risky Acts, Social Networks, and Unsafe Places   71     Conclusion and Recommendations   75 3   UNDERSTANDING THE DETERMINANTS OF HIV RISK BEHAVIOR   78     Neurobiological Determinants of Risk Behavior   78     Neurobiological Basis of Drug-Using Behavior   80     Psychosocial Determinants of Risk Behavior   83

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Aids and Behavior: An Integrated Approach       Psychosocial Perspectives on Risk Behavior   83     Psychological Theories of Behavior Change   84     Social Science Perspectives on Behavior and Behavior Change   88     Interventions to Change Behavior   98     Individual-Focused Interventions   99     Community-Focused Interventions   114     Maintaining Behavior Change and Preventing Relapse,   116     Evaluating the Effects of AIDS Interventions   119     Conclusion and Recommendations   121 4   DISEASE PROGRESSION AND INTERVENTION   124     The Relationship Between HIV and the Central Nervous System   125     Effects of HIV on the Central Nervous System: Defining the Issues   125     Staging and Cellular Sites of Central Nervous System Infection in AIDS Dementia Complex   127     Mechanisms for Causing Symptoms   128     Mechanisms of Central Nervous System Injury   129     Significance of AIDS Dementia Complex for Other Central Nervous System Disorders   133     Clinical Significance of AIDS Dementia Complex   134     Interactions Among HIV, Substance Use, and Mental Illness   134     Alcohol and the Immune System   134     Drug Use and HIV/AIDS   135     Interventions for the Seriously Mentally Ill   140     The Relationship Between Psychosocial Factors and HIV Infection   140     Psychoneuroimmunology   141     Coping with HIV/AIDS   142     Caregiving for People with HIV/AIDS   145     Conclusion and Recommendations   151 PART II MANAGING THE AIDS RESEARCH PROGRAMSAT NIAAA, NIDA, AND NIMH: 5   THE CONTEXT OF AIDS PROGRAMS AT NIAAA, NIDA, AND NIMH   157     The Reorganization of ADAMHA   158

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Aids and Behavior: An Integrated Approach     Background   158     Structural Effects of the ADAMHA Reorganization   163     AIDS Research and the NIH Reauthorization   168     The Budget Process   171     ADAMHA Budget Process, FY 1983 to FY 1992   172     Working Within the NIH Process   175     The Grant Review Process   176     Conclusion and Recommendations   185 6   RESEARCH FUNDING, PROGRAMS, ANDPRIORITIES AT NIAAA, NIDA, AND NIMH   186     Funding AIDS Activities   187     Categorizing AIDS Research   188     Mechanisms of Support   191     NIAAA   198     Programs and Priorities   201     Grants   204     NIDA   205     Programs and Priorities   209     Grants   217     NIMH   221     Programs and Priorities   225     Grants   228     Collaborative Projects   229     AIDS Research Centers   230     Training   231     The NIH Context   232     Conclusion and Recommendations   236 7   LINKAGES BETWEEN RESEARCH AND SERVICES   240     AIDS Programs at SAMHSA   240     Collaborations Between Research and Services   245     NIAAA   247     NIDA   248     NIMH   251     Barriers to Collaboration   253     Coordination of AIDS Activities within the Public Health Service and the Department of Health and Human Services   254     Conclusion and Recommendations   255 BIBLIOGRAPHY AND REFERENCES   257

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Aids and Behavior: An Integrated Approach   APPENDIXES A   Grants Analysis Methodology   299 B   Abbreviations and Acronyms   305 C   Acknowledgments   309 D   Contributors   315 INDEX   327

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Aids and Behavior: An Integrated Approach List of Boxes, Figures, and Tables BOXES 2.1   HIV Risk among the Seriously Mentally Ill   72 3.1   The Female Condom   112 5.1   A Brief History of Research and Services Programs for Mental Health and Substance Abuse   159 5.2   ADAMHA Programs Transferred to SAMHSA as a Result of Reorganization   166 6.1   National AIDS Demonstration Research (NADR) Program   212 6.2   Needle Exchange Research   216 6.3   Treatment Research   218 A.1   Sample Form   302 FIGURES S.1   NIAAA Expenditures (AIDS/Non-AIDS), 1983–1993   26 S.2   NIDA Expenditures (AIDS/Non-AIDS), 1983–1993   27 S.3   NIMH Expenditures (AIDS/Non-AIDS), 1983–1993   29 S.4   NIH AIDS Research Funding by Component, 1992   32 S.5   ADAMHA AIDS Budget Authority, 1983–1992   36 2.1   Death Rates for Leading Causes and HIV Infection for Persons Aged 25–44, 1982–1991   68 5.1   Organization of the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA)   164

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Aids and Behavior: An Integrated Approach 5.2   Organization of the Substance Abuse and Mental Health Services Administration (SAMHSA)   165 5.3   Organization of the National Institutes of Health (NIH)   167 5.4   Budget Calendar   172 5.5   Budget Planning Cycle, FY 1994   173 5.6   NIMH AIDS and Non-AIDS Applications, 1989–1993   179 5.7   NIDA AIDS and Non-AIDS Applications, 1989–1993   180 5.8   NIAAA AIDS and Non-AIDS Applications, 1989–1993   180 6.1   Committee Codes   189 6.2   Proportion of Multi-coded AIDS Research Grants at NIAAA, NIDA, and NIMH, 1987–1992   190 6.3   Proportion of Basic AIDS Research Grants at NIAAA, NIDA, and NIMH, 1987–1992   191 6.4   NIAAA Expenditures (AIDS/Non-AIDS), 1983–1993   198 6.5   NIAAA AIDS Expenditures, 1983–1993   199 6.6   NIAAA AIDS Funding by Mechanism, 1987–1992   201 6.7   NIAAA Non-AIDS Funding by Mechanism, 1987–1992   202 6.8   Proportion of NIAAA AIDS Research Grants, Coded for Each Category, 1987–1992   205 6.9   NIDA Expenditures (AIDS/Non-AIDS), 1983–1993   206 6.10   NIDA AIDS Expenditures, 1983–1993   206 6.11   NIDA AIDS Funding by Mechanism, 1987–1992   207 6.12   NIDA Non-AIDS Funding by Mechanism, 1987–1992   208 6.13   Proportion of NIDA AIDS Research Grants, Coded for Each Category, 1987–1992   220 6.14   NIMH Expenditures (AIDS/Non-AIDS), 1983–1993   222 6.15   NIMH AIDS Expenditures, 1983–1993   222 6.16   NIMH AIDS Funding by Mechanism, 1987–1992   223 6.17   NIMH Non-AIDS Funding by Mechanism, 1987–1992   224 6.18   Proportion of NIMH AIDS Research Grants, Coded for Each Category, 1987–1992   228 6.19   NIH Expenditures (AIDS/Non-AIDS), 1983–1993   232 6.20   NIH AIDS Research Funding by Component, 1992   233 7.1   ADAMHA AIDS Budget Authority, 1983–1992   243 TABLES 3.1   A Sample of AIDS Preventive Intervention Research Projects Funded by NIAAA, NIDA, and NIMH   100

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Aids and Behavior: An Integrated Approach 6.1   AIDS-Specific and AIDS-Related Program Announcements (PAs) and Requests for Applications (RFAs): NIAAA, NIDA, and NIMH   194 6.2   NIAAA AIDS Staffing (FTEs) by Administrative Area, 1987–1993   200 6.3   NIDA AIDS Staffing (FTEs) by Administrative Area, 1987–1993   209 6.4   NIMH AIDS Staffing (FTEs) by Administrative Area, 1986–1993   224 6.5   AIDS Funding as Proportion of 1992 Budget, Selected NIH Institutes   234 7.1   SAMHSA AIDS Program, 1986–1994   242

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