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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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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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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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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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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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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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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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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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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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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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APPENDIXES
A
Grants Analysis Methodology
299
B
Abbreviations and Acronyms
305
C
Acknowledgments
309
D
Contributors
315
INDEX
327
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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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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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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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