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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.
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
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
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
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
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
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
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
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.
List of Boxes, Figures, and Tables
BOXES
2.1 |
HIV Risk among the Seriously Mentally Ill |
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3.1 |
The Female Condom |
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5.1 |
A Brief History of Research and Services Programs for Mental Health and Substance Abuse |
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5.2 |
ADAMHA Programs Transferred to SAMHSA as a Result of Reorganization |
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6.1 |
National AIDS Demonstration Research (NADR) Program |
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6.2 |
Needle Exchange Research |
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6.3 |
Treatment Research |
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A.1 |
Sample Form |
FIGURES
S.1 |
NIAAA Expenditures (AIDS/Non-AIDS), 1983–1993 |
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S.2 |
NIDA Expenditures (AIDS/Non-AIDS), 1983–1993 |
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S.3 |
NIMH Expenditures (AIDS/Non-AIDS), 1983–1993 |
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S.4 |
NIH AIDS Research Funding by Component, 1992 |
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S.5 |
ADAMHA AIDS Budget Authority, 1983–1992 |
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2.1 |
Death Rates for Leading Causes and HIV Infection for Persons Aged 25–44, 1982–1991 |
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5.1 |
Organization of the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA) |
5.2 |
Organization of the Substance Abuse and Mental Health Services Administration (SAMHSA) |
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5.3 |
Organization of the National Institutes of Health (NIH) |
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5.4 |
Budget Calendar |
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5.5 |
Budget Planning Cycle, FY 1994 |
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5.6 |
NIMH AIDS and Non-AIDS Applications, 1989–1993 |
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5.7 |
NIDA AIDS and Non-AIDS Applications, 1989–1993 |
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5.8 |
NIAAA AIDS and Non-AIDS Applications, 1989–1993 |
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6.1 |
Committee Codes |
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6.2 |
Proportion of Multi-coded AIDS Research Grants at NIAAA, NIDA, and NIMH, 1987–1992 |
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6.3 |
Proportion of Basic AIDS Research Grants at NIAAA, NIDA, and NIMH, 1987–1992 |
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6.4 |
NIAAA Expenditures (AIDS/Non-AIDS), 1983–1993 |
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6.5 |
NIAAA AIDS Expenditures, 1983–1993 |
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6.6 |
NIAAA AIDS Funding by Mechanism, 1987–1992 |
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6.7 |
NIAAA Non-AIDS Funding by Mechanism, 1987–1992 |
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6.8 |
Proportion of NIAAA AIDS Research Grants, Coded for Each Category, 1987–1992 |
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6.9 |
NIDA Expenditures (AIDS/Non-AIDS), 1983–1993 |
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6.10 |
NIDA AIDS Expenditures, 1983–1993 |
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6.11 |
NIDA AIDS Funding by Mechanism, 1987–1992 |
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6.12 |
NIDA Non-AIDS Funding by Mechanism, 1987–1992 |
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6.13 |
Proportion of NIDA AIDS Research Grants, Coded for Each Category, 1987–1992 |
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6.14 |
NIMH Expenditures (AIDS/Non-AIDS), 1983–1993 |
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6.15 |
NIMH AIDS Expenditures, 1983–1993 |
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6.16 |
NIMH AIDS Funding by Mechanism, 1987–1992 |
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6.17 |
NIMH Non-AIDS Funding by Mechanism, 1987–1992 |
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6.18 |
Proportion of NIMH AIDS Research Grants, Coded for Each Category, 1987–1992 |
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6.19 |
NIH Expenditures (AIDS/Non-AIDS), 1983–1993 |
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6.20 |
NIH AIDS Research Funding by Component, 1992 |
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7.1 |
ADAMHA AIDS Budget Authority, 1983–1992 |
TABLES
3.1 |
A Sample of AIDS Preventive Intervention Research Projects Funded by NIAAA, NIDA, and NIMH |
6.1 |
AIDS-Specific and AIDS-Related Program Announcements (PAs) and Requests for Applications (RFAs): NIAAA, NIDA, and NIMH |
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6.2 |
NIAAA AIDS Staffing (FTEs) by Administrative Area, 1987–1993 |
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6.3 |
NIDA AIDS Staffing (FTEs) by Administrative Area, 1987–1993 |
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6.4 |
NIMH AIDS Staffing (FTEs) by Administrative Area, 1986–1993 |
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6.5 |
AIDS Funding as Proportion of 1992 Budget, Selected NIH Institutes |
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7.1 |
SAMHSA AIDS Program, 1986–1994 |