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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 competences and with regard for appropriate balance.
This project has been funded entirely with federal funds from the Centers for Disease Control and Prevention, under Contract No. 200-1999-00123. The views presented are those of the Institute of Medicine Committee on HIV Prevention Strategies in the United States and are not necessarily those of the funding organization.
Library of Congress Cataloging-in-Publication Data
No time to lose : getting more from HIV prevention / Committee on HIV Prevention Strategies in the United States, Division of Health Promotion and Disease Prevention, Institute of Medicine ; Monica S. Ruiz . . . [et al.] editors.
Includes bibliographical references and index.
1. AIDS (Disease)—United States—Prevention. I. Ruiz, Monica S. II. Institute of Medicine (U.S.). Committee on HIV Prevention Strategies in the United States.
RA643.83 .N6 2001
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Institute of Medicine
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COMMITTEE ON HIV PREVENTION STRATEGIES IN THE UNITED STATES
HARVEY V. FINEBERG, M.D., M.P.P., Ph.D. (Co-Chair),
Provost, Harvard University
JAMES TRUSSELL, Ph.D. (Co-Chair), Associate Dean and Professor of Economics and Public Affairs,
Woodrow Wilson School of Public and International Affairs, Princeton University
RAYMOND BAXTER, Ph.D., Executive Vice President,
The Lewin Group
WILLARD CATES, JR., M.D., M.P.H., President,
Family Health International
MYRON S. COHEN, M.D., Professor of Medicine, Microbiology and Immunology; Chief, Division of Infectious Diseases; and Director,
Center for Infectious Diseases, University of North Carolina at Chapel Hill
ANKE A. EHRHARDT, Ph.D., Director,
HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute,
Professor of Medical Psychology,
BRIAN FLAY, D.Phil., Professorof Community Health Sciences and Director,
Health Research and Policy Centers, School of Public Health, University of Illinois at Chicago
LORETTA JEMMOTT, Ph.D., Director,
Center for Urban Health Research,
of Nursing, University of Pennsylvania
EDWARD H. KAPLAN, Ph.D., William N. and Marie A. Beach Professor of Management Sciences; Professor of Public Health,
School of Management, Yale University
NANCY KASS, Sc.D., Associate Professor and Director of Program
in Ethics and Health, Johns Hopkins University School of Public Health
MARSHA LILLIE-BLANTON, Dr.P.H., Vice President,
Henry J. Kaiser Family Foundation
MICHAEL MERSON, M.D., Dean and Chairman
of Epidemiology and Public Health, School of Medicine, Yale University
EDWARD TRAPIDO, Sc.D., Vice-Chair and Professor,
Department of Epidemiology and Public Health, University of Miami
STEN H. VERMUND, M.D., Ph.D., Professor and Director,
Division of Geographic Medicine, Department of Medicine;
Sparkman Center for International Public Health Education, School of Public Health, University of Alabama at Birmingham
PAUL VOLBERDING, M.D., Professor of Medicine and Director,
UCSF Positive Health Program at San Francisco General Hospital;
Center for AIDS Research, University of California at San Francisco
ANDREW ZOLOPA, M.D., Assistant Professor of Medicine,
School of Medicine, Stanford University;
Stanford Positive Care Program; and
AIDS Medicine Division, Santa Clara Valley Medical Center, San Jose
IVAN JUZANG, M.B.A., President,
MEE Productions, Philadelphia
MICHAEL A. STOTO, Ph.D., Chair and Professor of Epidemiology,
George Washington University
LIAISONS FROM THE BOARD ON HEALTH PROMOTION AND DISEASE PREVENTION
JOYCE SEIKO KOBAYASHI, M.D., Director,
HIV/AIDS Neuropsychiatric Consultation Services, Denver Health Medical Center
KATHLEEN E. TOOMEY, M.D., M.P.H., Director,
Division of Public Health, Georgia Department of Human Resources
MONICA S. RUIZ, Ph.D., M.P.H., Study Director
ALICIA R. GABLE, M.P.H., Research Associate
DONNA ALMARIO, Research Assistant
ANNA STATON, Project Assistant
ROSE MARIE MARTINEZ, Sc.D., Division Director
Judith Auerbach, Ph.D., Prevention Science Coordinator and Behavioral and Social Science Coordinator, Office of AIDS Research, National Institutes of Health
Kathy Cahill, Associate Director for Policy, Planning, and Evaluation, Office of the Director, Centers for Disease Control and Prevention
William B. Calvert, M.S., M.B.A., M.P.H., Chairman, Department of Defense Sexually Transmitted Diseases Prevention Committee and Program Manager, Sexual Health and Responsibility Program, Navy Environmental Health Center, Department of the Navy
Robert Fullilove, Ed.D., Associate Dean for Community and Minority Affairs, Columbia University School of Public Health, CDC Advisory Committee on HIV and STD Prevention
Randolph Graydon, Director, Division of Advocacy and Special Issues, Center for Medicaid and State Operations, Health Care Financing Administration
Kim Hamlett, Ph.D., Associate Director for HIV Prevention, AIDS Service, Department of Veterans Affairs
Leslie Hardy, M.H.S., Special Assistant to Assistant Secretary for Planning and Evaluation, Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services
King Holmes, M.D., Ph.D., Director, Center for AIDS and STD, University of Washington, CDC Advisory Committee on HIV and STD Prevention
Richard Klein, HIV/AIDS Program Director, Food and Drug Administration
Mark Magenheim, M.D., M.P.H., Medical Director, Sarasota County Health Department, CDC Advisory Committee on HIV and STD Prevention
Dorothy Mann, Southeastern Pennsylvania Family Planning Council, CDC Advisory Committee on HIV and STD Prevention
Jean McGuire, Ph.D., AIDS Director, Massachusetts Department of Public Health, AIDS Bureau, CDC Advisory Committee on HIV and STD Prevention
M. Valerie Mills, M.S.W., Associate Administrator for HIV/AIDS, Office of Policy and Program Coordination, Substance Abuse and Mental Health Services Administration
Matthew Murguia, Associate Director for Policy, White House Office of National AIDS Policy
John Palenicek, Ph.D., Director, Policy and Program Development Office, HIV/AIDS Bureau, Health Resources Services Administration
Ronald Valdiserri, M.D., M.P.H., Deputy Director, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention
Deborah Von Zinkernagel, R.N., M.S., Deputy Director, Office of HIV/ AIDS Policy, Office of the Secretary, U.S. Department of Health and Human Services
Captain Greg Wood, M.S.N., F.N.P., Director, Centers of Excellence, Associate Director, HIV Center of Excellence, Phoenix Medical Center, Indian Health Service, United States Public Health Service
State and Local Organizations
Guthrie Birkhead, M.D., M.P.H., Director, AIDS Institute, New York Department of Health, Council of State and Territorial Epidemiologists
Joe Cronauer, Co-Director, AIDS Activities Coordinating Office, Philadelphia Department of Public Health, National Association of County and City Health Officials
Helen Fox-Fields, Senior Director for Infectious Disease Policy, Association of State and Territorial Health Officers
Martin Gonzales-Rojas, CDC Community Planning Group, Chicago, Illinois
David Johnson, M.D., M.P.H., Deputy Director for Public Health and Chief Medical Executive, Michigan Department of Community Health, Association of State and Territorial Health Officers
Leigh Lipson, Program Associate, National Association of County and City Health Officials
John Middaugh, M.D., Alaska State Epidemiologist, Council of State and Territorial Epidemiologists
Julie Scofield, Executive Director, National Alliance of State and Territorial AIDS Directors
Evelyn Ullah, B.S.N., M.S.W., Director, Office of HIV/AIDS Services, Miami-Dade County Health Department, Miami Crisis Response Team Liaison, Congressional Black Caucus Initiative
Larry Abrams, Associate Director of Prevention, Gay Men’s Health Crisis
Julio Abreu, Associate Director of Government Affairs, AIDS Action Council
Terje Anderson, Executive Director, National Association of People with AIDS
Cornelius Baker, Executive Director, Whitman Walker Clinic
Ignatius Bau, J.D., Policy Director, Asian and Pacific Islander American Health Forum
Lorraine Cole, Ph.D., Executive Director, National Medical Association
Blake Cornish, Federal Legislative Lawyer, National Gay/Lesbian Task Force
Lawrence D’Angelo, M.D., M.P.H, Society for Adolescent Medicine
Debra Fraser-Howze, Chief Executive Officer, The National Black Leadership Commission on AIDS
Leroy Gross, M.D., M.P.H., Aerospace Medicine Regent, American College of Preventive Medicine
Christopher La Bonte, Senior Policy Advocate, Human Rights Campaign
Miguelina Ileana León, Director of Government Relations and Public Policy, National Minority AIDS Council
Barbara Menard, Senior Policy Advocate, Human Rights Campaign Commission on AIDS
Wayne J. Mitchell, Ph.D., Executive Director, Association for Drug Abuse Treatment and Prevention
Clark Moore, Director for Policy and Communications, AIDS Alliance for Children, Youth, and Families
Martin Ornelas-Quintero, Executive Director, The National Latina/ Latino Lesbian, Gay, Bisexual, and Transgender Organization
Sally Raphel, M.S., R.N., Director of Nursing Practice, American Nurses Association
Elena Rios, President, Hispanic Medical Association
Ron Rowell, M.P.H., Executive Director, National Native American AIDS Prevention Center
Jane Silver, Director of Public Policy, American Foundation for AIDS Research
Shepherd Smith, President, Children’s AIDS Fund
Thomas Coates, Ph.D., Director, Center for AIDS Prevention Studies, University of California at San Francisco
James Curran, M.D., M.P.H, Dean, Rollins School of Public Health, Director, Center for AIDS Research, Emory University
Robert H. Remien, Ph.D., Research Scientist, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University
Through 1999, more than 733,000 acquired immune deficiency syndrome (AIDS) cases and 430,000 deaths from human immunodeficiency virus (HIV) infection and AIDS have been reported in the United States. Prevention efforts conducted by federal, state, and local government agencies, nongovernmental organizations, and the private sector have shown considerable success in slowing the rapid growth of the epidemic. However, the demographic face of the epidemic is changing dramatically; this in turn, is changing how the nation must respond. Men who have sex with men remain at high risk in many areas. However, racial and ethnic minorities, women, adolescents, and young adults are increasingly affected by HIV/AIDS. In addition, recent improvements in the treatment of HIV disease have enabled more people to live longer with HIV and AIDS, but have contributed to a growing complacency toward the disease. The promise of a vaccine for HIV remains only a hope, not a reality.
Given these challenges, the Centers for Disease Control and Prevention (CDC) requested that the Institute of Medicine convene a committee to conduct a comprehensive review of current HIV prevention efforts in the United States. Specifically, this Committee on HIV Prevention Strategies in the United States was asked to review the HIV prevention efforts of the CDC and other Department of Health and Human Services (DHHS) agencies, as well as the efforts of various other public and private sector
agencies and organizations, and to examine the changing nature of the epidemic, advances in clinical prevention and treatment, evaluations of public health interventions, and emerging research in the behavioral sciences and its impact on HIV prevention. Based on this review, the Committee was asked to propose a visionary framework for future national HIV prevention activities and suggest institutional roles for the CDC and other federal, public, and private sector agencies in the context of this framework.
The Committee met four times over a 5-month period between January and May 2000. During this time, we held three workshops with a variety of federal agencies, state and local organizations, nongovernmental organizations, and researchers regarding current HIV prevention activities. The Committee engaged in several additional data gathering activities to gain input regarding HIV prevention efforts at the federal, state, and local levels. These activities included site visits to several state health departments, a site visit to the Community Planning Leadership Summit conference in Los Angeles, and a request for public comment. The Committee also reviewed the current literature and received a significant amount of information from our liaison panel, which was comprised of representatives of federal, state and local agencies and organizations, as well as of advocacy and research organizations (listed on pages vii–ix). Based on this evidence, the Committee identified the fundamental components of a visionary framework for a national HIV prevention strategy. These components are described and explained in the subsequent chapters of this report.
Given the broad scope of the Committee’s charge, the complexity of the issues, and the limited time allowed for conducting the work and writing the report (seven months), we made several important decisions regarding how we would approach the task. First, the Committee chose to focus on a framework of principles to guide future HIV prevention efforts, rather than to develop a detailed road map for conducting HIV prevention activities. Second, the Committee chose as a starting point for this framework the principle that the nation should have an explicit prevention goal: to avert as many new HIV infections as possible with the resources available for HIV prevention. While this may seem an obvious goal, we found that many current HIV prevention efforts are inconsistent with this principle.
The Committee recognized that there are a number of factors that can undermine public health goals, including those related to HIV prevention:
inappropriate considerations are used to frame policy choices;
suboptimal decision rules are applied to the problem;
social values and prejudices do not support the policy goal;
insufficient resources hinder the successful implementation of the policy goal;
organizational or structural factors impede implementation of policies;
failures in implementation, related to such factors as inadequate training or lack of operating capacity, detract from the desired outcome of averting new infections.
In light of the Committee’s limited time frame and our desire to provide a guiding framework, we chose to focus on the first three factors: framing HIV prevention policy choices, decision making for allocating federal prevention funds, and overcoming social obstacles to success.
The Committee’s visionary framework for HIV prevention suggests new directions for HIV/AIDS surveillance, resource allocation, the incorporation of prevention into the clinical setting, technology development, and the translation of research into practice. We also discuss the social and political barriers that continue to limit the success of HIV prevention. Although many of these barriers have been addressed in previous Institute of Medicine and other public health reports, the Committee felt it would be unconscionable not to restate its opposition to these powerful forces that have impeded prevention efforts.
The Committee is aware that in providing this set of principles to guide future HIV prevention activities, several aspects of the framework will require the gathering and application of better data, as well as the development of closer working relationships between federal, state, and local agencies, before recommendations can be fully implemented. We nevertheless, believe that these factors do not detract from the importance of a sound foundation for decision making. It simply means that the organizations and institutions involved in HIV prevention should work toward these goals using the best available data while seeking sounder data with which to better inform future decisions.
While the Committee observed ample evidence of the lack of federal leadership in HIV prevention, we do not focus on this issue in this report. Today, many different agencies share responsibility for federal HIV prevention activities (see Appendix C), and sometimes compete for resources and public attention.
While federal officials and agencies have tried several different leadership models to better coordinate and lead HIV prevention efforts, none has yet been very effective in bringing about the type of overarching
guidance that is needed to coordinate federal prevention agencies and activities, as well as to bring together the wide variety of DHHS, non-DHHS, and outside constituencies that are involved in HIV prevention efforts. Previous studies have examined these issues and made recommendations to resolve interagency1 and intra-agency2 coordination and leadership problems. The Committee joins these panels and others in calling for a unified framework for managing federal HIV prevention activities. Reclaiming federal leadership of the nation’s HIV prevention strategy requires better coordination of efforts that are currently too dispersed.
Additionally, the Committee’s charge was limited to examining HIV prevention efforts in the United States. However, we believe that significant attention must also be directed to improving HIV prevention efforts at the global level, and to doing more to ameliorate the devastating impact that HIV/AIDS has had on the health and social and economic welfare of developing nations.
The Committee has been motivated by the conviction that the nation can and should do more to prevent HIV infection, and that the efforts to bring these objectives to fruition must begin now. The past two decades of HIV prevention activities are a testament to the fact that prevention is effective. And, given the social complacency that has emerged along with the recent therapeutic advances in HIV treatment, prevention will be even more important in the decades to come. The Committee believes that there is still much to be done, and that the successful experiences of other countries’ HIV prevention efforts—particularly those demonstrating the critical importance of political leadership and commitment, community mobilization, and the removal of social barriers—provide some valuable “lessons learned” for future HIV prevention activities in the United States. Given this, the Committee remains firm in our conviction that the nation, working in a coordinated manner and with due haste, can do more to slow and perhaps even halt the spread of this deadly epidemic.
Harvey V. Fineberg, Cochair
James Trussell, Cochair
Centers for Disease Control and Prevention Advisory Committee for HIV and STD Prevention (CDC Advisory Committee). 1999. Work Group Report on HIV Prevention Activities at the CDC.
Department of Health and Human Services, Coordinating Group on HIV/AIDS (DHHS). 1994. HIV Prevention Work Group Recommendations, report to Philip Lee and Patsy Fleming. Washington, DC: DHHS.
This report represents the collaborative efforts of many organizations and individuals, without whom this study would not have been possible. The Committee extends its most sincere gratitude to the organizations and individuals mentioned below.
Numerous individuals and organizations generously shared their knowledge and expertise with the Committee through their active participation in Committee workshops that were held on January 23, March 1–2, and April 13, 2000. These sessions were intended to gather information related to current HIV prevention activities in order to help inform the Committee’s vision of future prevention efforts. These individuals are listed in Appendix F.
Members of the study’s liaison panel contributed valuable information and suggestions that were helpful in preparing this report. These organizations and their representatives to the liaison panel are listed on pages vii–ix.
The directors and staff of the Colorado, Maryland, New York, and Connecticut state health departments hosted individual committee members during site visits. Additionally, the Centers for Disease Control and Prevention hosted the project staff during a site visit to its main offices in Atlanta, GA.
The Committee would like to thank all of the individuals at the Community Planning and Leadership Summit in Los Angeles, CA, on March 29–31, 2000, who discussed the current state of HIV prevention and shared
their experiences in conducting HIV prevention at the state, local, and community level with us. Julie Scofield, Executive Director of the National Association of State and Territorial AIDS Directors, was instrumental in facilitating the Committee’s public hearing and focus groups at this meeting. The Committee is grateful to all of the individuals who shared their experiences via their responses to the Committee’s request for public comment.
The Committee would like to thank the numerous staff members of the Institute of Medicine, the National Research Council, and the National Academy Press who contributed to the development, production, and dissemination of this report. The Committee is most grateful to Monica Ruiz who did a remarkable job of directing a very fast-track, complex, and demanding study, and to Alicia Gable, who showed exceptional skill in conducting research and assisting in project management. Donna Almario provided outstanding research support, as well as guidance to the new staff on IOM procedures. Cara Christie provided excellent administrative support through the first three months of the study. Anna Staton was an invaluable project assistant, who skillfully coordinated Committee meetings, organized site visits, and maintained project records and files. Rose Martinez and Susanne Stoiber provided guidance and assistance above and beyond the call of duty. Kathleen Stratton and Donna Duncan provided valuable support and advice regarding project organization. Andrea Cohen and Melissa Goodwin handled the financial accounting of the study. Mike Edington provided editorial assistance. Jennifer Otten, Vanee Vines, Neil Tickner, Jim Jensen, and Sandra McDermin provided assistance with report dissemination. We are especially grateful to Claudia Carl and Clyde Behney for cheerfully and skillfully guiding the staff through the report review process.
In addition to IOM staff, we are most grateful to Jennifer Rubin for her assistance in preparing the data needed for the resource allocation scenarios in Chapter 3, to Jeffrey Levi and Andy Schneider for their noteworthy contributions to Chapter 4, and to Tom Burroughs for invaluable assistance in drafting appendices and editing the report.
The Centers for Disease Control and Prevention generously provided funding and lent support to this project. Our project liaisons—Ronald Valdiserri, Lydia Ogden, and Eva Margolies Seiler—were extraordinarily helpful in providing data, information, and support throughout the course of the study. Their encouragement and support are gratefully acknowledged.
The report was reviewed by individuals chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments to assist the authors and the Institute of Medicine in making the report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The content of the review comments and the draft manuscript remain confidential to protect the integrity of the deliberative process. The Committee wishes to thank the following individuals for their participation in the report review process:
Karen Basen-Engquist, Ph.D., Department of Behavioral Science, The University of Texas, M.D. Anderson Cancer Center, Houston
Ronald Bayer, Ph.D., Columbia University School of Public Health
Sophia Chang, M.D., M.P.H., Director, Center for Quality Management in HIV Care, Department of Veterans Affairs, Palo Alto, California
Thomas Coates, Ph.D., Director, Center for AIDS Prevention Studies, University of California at San Francisco
Gerald Friedland, M.D., Director, Yale AIDS Program, Yale University School of Medicine
James O. Kahn, M.D., Positive Health Program, San Franciso General Hospital
Harold Pollack, Ph.D., Department of Health Management and Policy, University of Michigan
Liza Solomon, Dr.P.H., Director, Maryland State AIDS Administration
Darrell P. Wheeler, Ph.D., Assistant Professor, Columbia University School of Social Work
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Kristine M. Gebbie, Dr.P.H., R.N., Associate Professor of Nursing, Columbia University, appointed by the Institute of Medicine and Charles C.J. Carpenter, M.D., Professor of Medicine, The Miriam Hospital, Brown University, appointed by the NRC’s Report Review Committee, who were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.