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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE Securing the Legacy of RyanWhite Committee on Public Financing and Delivery of HIV Care Board on Health Promotion and Disease Prevention INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 study was supported by Contract No. 231-01-0061 between the National Academy of Sciences and the Health Resources and Services Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Public financing and delivery of HIV/AIDS care : securing the legacy of Ryan White / Committee on the Public Financing and Delivery of HIV Care, Board on Health Promotion and Disease Prevention. p. ; cm. “Supported by Contract No. 231-01-0061 between the National Academy of Sciences and the Health Resources and Services Administration.” Includes bibliographical references and index. ISBN 0-309-09228-0 (hardcover) 1. AIDS (Disease)—Patients—Care—Government policy—United States. 2. AIDS (Disease)—Patients—Care—United States—Finance. 3. HIV infections—Patients—Care—Government policy—United States. 4. HIV infections—Patients—Care—United States—Finance. [DNLM: 1. HIV Infections—therapy—United States. 2. Delivery of Health Care—standards—United States. 3. Financing, Government—United States. WC 503.2 P9756 2005] I. Institute of Medicine (U.S.). Committee on the Public Financing and Delivery of HIV Care. RA643.83.P83 2005 362.196′9792—dc22 2005010580 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2005 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 serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White COMMITTEE ON PUBLIC FINANCING AND DELIVERY OF HIV CARE LAUREN LEROY, Ph.D., (Chair), President and CEO, Grantmakers In Health MARK BARNES, J.D., LL.M., Partner, Health Care Department, Ropes and Gray (until November 2003) DAVID HOLTGRAVE, Ph.D., Professor, Rollins School of Public Health, Emory University JAMES G. KAHN, M.D., M.P.H., Professor, Institute for Health Policy Studies, University of California, San Francisco MARGARET A. MURRAY, M.P.A., Executive Director, Association of Health Center Affiliated Health Plans DAVID R. NERENZ, Ph.D., Senior Staff Investigator, Center for Health Services Research, Henry Ford Health System HERMINIA PALACIO, M.D., M.P.H., Assistant Professor of Medicine, Baylor College of Medicine, Houston Center for Quality of Care and Utilization Studies (until August 2002) BENY PRIMM, M.D., Founder/Executive Director, Addiction Research and Treatment Corporation (until August 2003) ANDREAS G. SCHNEIDER, J.D., Principal, Medicaid Policy, LLC MARTIN F. SHAPIRO, M.D., Ph.D., Professor, Departments of Medicine and Health Services Research, University of California, Los Angeles JANET L. SHIKLES, M.A., M.S.W., Health Policy Consultant JULIE SOCHALSKI, Ph.D., F.A.A.N., R.N., Associate Professor, University of Pennsylvania School of Nursing DAVID VLAHOV, Ph.D., M.S., Director, Center for Urban Epidemiological Studies PAUL A. VOLBERDING, M.D., Chief of the Medical Service, San Francisco Veterans Affairs Medical Center MARTIN WASSERMAN, M.D., J.D., Former Secretary of Healthcare Policy, Finance, and Regulation, Maryland Department of Health and Mental Hygiene (until July 2002) WILLIAM E. WELTON, Dr.P.H., M.H.A., MHA Program Director, University of Washington, Seattle Liaison from the Board on Health Promotion and Disease Prevention JOYCE SEIKO KOBAYASHI, M.D., Associate Professor, Department of Psychiatry, University of Colorado Health Sciences Center
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Staff Rose Marie Martinez, Sc.D., Director, Board on Health Promotion and Disease Prevention Douglas S. Weil, Sc.D., Study Director (until July 2003) Melissa G. French, M.A., Research Associate Gina Bata, Sr. Project Assistant (until December 2002) Lori Young, Project Assistant (until July 2003) Rita Gaskins, Administrative Assistant, Board on Health Promotion and Disease Prevention
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Reviewers This report has been reviewed in draft form by persons 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 that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards of objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following for their review of this report: JOYCE ANASTASI, Ph.D., R.N., F.A.A.N., Columbia School of Nursing CHRISTOPHER G. ATCHISON, M.P.A., University of Iowa GORDON DEFRIESE, M.D., North Carolina Institute of Medicine, Inc. MICHAEL V. DRAKE, M.D., University of California Office of the President DAVID FINE, University of Alabama Health Systems ERIC K. FRANCE, M.D., Kaiser Permanente, Colorado BARBARA MATULA, North Carolina Medical Society Foundation J. MICHAEL MCGINNIS, M.D., Robert Wood Johnson Foundation STEPHEN MORIN, Ph.D., University of California, San Francisco WILLIAM G. POWDERLY, M.D., Barnes-Jewish Hospital MICHAEL SAAG, M.D., University of Alabama at Birmingham
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White BRUCE SCHACKMAN, Ph.D., M.B.A., Weill Medical College of Cornell University FRANK A. SLOAN, Ph.D., Duke University 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 Dr. Joseph Newhouse, Harvard University, and Dr. Fernando Guerra, San Antonio Metropolitan Health District. Appointed by the Institute of Medicine, they 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 author committee and the institution.
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Acknowledgments 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 those mentioned below. The Committee thanks the sponsor of the study, the Health Resources and Services Administration (HRSA), especially the project officer Richard Conviser. All of the staff at HRSA were very gracious in handling the Committee’s requests for information, for which we are very grateful. The Committee would especially like to thank Steven Young, Jill Ashman, Douglas Morgan, Deborah Parham, Kathy Marconi, and Faye Malitz for their help. The Committee greatly appreciates the input of speakers whose presentations informed their thinking, including: David M. Abramson, Columbia University Casey S. Blass, Texas Department of Health Glenn Clark, Whitman-Walker Clinic Richard Conviser, Health Resources and Services Administration Susan Dooha, Gay Men’s Health Crisis Geno Dunnington, Whitman-Walker Clinic Ruth Finkelstein, New York Academy of Medicine Julia Hidalgo, The George Washington University Jennifer Kates, Kaiser Family Foundation Miguelena I. Leon, National Minority AIDS Council
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Jeffrey Levi, The George Washington University Mark O. Loveless, Oregon Health Division Christine Lubinski, HIV Medicine Association Matthew McClain, McClain and Associates, Inc. Jean McGuire, Massachusetts Department of Public Health Douglas Morgan, Health Resources and Services Administration John Palen, The George Washington University Deborah Parham, Health Resources and Services Administration Matt Salo, National Governor’s Association Bruce Schackman, Cornell University Wayne Smith, Centers for Medicare and Medicaid Services Tim Westmoreland, Georgetown University Steven Young, Health Resources and Services Administration The work of this Committee has been informed by several high-quality Institute of Medicine (IOM) reports on relevant topics, including To Err Is Human: Building a Safer Health System (2000); Crossing the Quality Chasm: A New Health System for the 21st Century (2001); Care Without Coverage: Too Little, Too Late (2002); Fostering Rapid Advances in Health Care: Learning from Systems Demonstration (2002); Priority Areas for National Action: Transforming Health Care Quality (2003); and Insuring America’s Health: Principles and Recommendations (2004). We acknowledge our indebtedness to the committees and staffs of these reports. The Committee commissioned work from a number of authors. Jennifer Kates provided an invaluable update of her comprehensive paper on the financing of HIV/AIDS care; Ruth Finkelstein and Rebecca Tiger’s work on HIV and substance abuse and Miriam Davis’s analysis of HIV and serious mental illness greatly added to the Committee’s knowledge; Christine Lubinski provided an in-depth analysis of Medicaid programs in five states; Jeffrey Levi examined the changes in the Ryan White CARE Act since its inception; and John Palen wrote a legislative history of the Ryan White CARE Act. All of this work was extremely helpful and added to the Committee’s understanding of this complex topic. The Committee would also like to thank the consultants who provided valuable information, analysis, and support—Constance Currier, Kathryn Ikard, and Mark Polston. The Committee would like especially to thank Barbara M. Smith for her contribution to the development and analysis of the various public financing options. The Committee wishes to thank the liaison panel members: Terje Anderson, A. Cornelius Baker, Christopher Bates, Ignatius Bau, Guthrie Birkhead, G. Stephen Bowen, Mary Ann Chiasson, Richard Conviser, Gene Copello, Sharen Duke, Helen Fox Fields, Debra Frazer-Howze, Robert Fullilove, Kenneth T. Jones, Jennifer Kates, Seth Kilbourn, Monina Klevens,
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Christopher Labonte, Miguelina I. Leon, Marsha Martin, Jean McGuire, Jesse Milan, Thomas L. Milne, Murray Penner, Kees Reitmeijer, Matt Salo, Jane Silver, Paul Simon, Wayne Smith, Tim Westmoreland, Joy Johnson Wilson, David Wunsch, and Steven Young. The Committee is grateful for their guidance. In particular, the Committee would like to recognize two of its members, Jim Kahn and David Holtgrave, for their enormous contribution in developing the model used to predict the results of the Committee’s recommendations. Dr. Kahn would like to acknowledge the inspiration and support that his father Stephen M. Kahn (deceased January 2003) offered for his work in HIV prevention and care policy. The Committee also gives a special thanks to Andy Schnieder for patiently guiding the Committee through the analysis of program options. The Committee would also like to thank the numerous staff members of the Institute of Medicine, the National Research Council, and the National Academies Press who contributed to the development, review, production, and dissemination of this report. The Committee is grateful to Douglas Weil, who directed this study from its inception until July of 2003, and to Rose Marie Martinez, who provided guidance and oversight as Board Director and directed the study from July 2003 forward. The Committee extends its thanks to Melissa French for her outstanding research and writing, and assistance with model building. The Committee is also thankful for the administrative assistance provided by Gina Bata, Rita Gaskins, and Lori Young. Assistance with references and formatting of the report was provided by Hope Hare, Peter James, and Deepali Patel. IOM’s research librarian, William McLeod, was enormously helpful in gathering and organizing the vast amounts of literature available on HIV/AIDS.
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Contents PROLOGUE 1 EXECUTIVE SUMMARY 5 1 INTRODUCTION: SECURING THE LEGACY OF RYAN WHITE 27 The Ryan White CARE Act, 28 The Charge to the Committee, 32 Findings, 35 References, 35 2 HIV/AIDS CARE IN THE THIRD DECADE: OPPORTUNITIES AND CHALLENGES IN THE CHANGING EPIDEMIC 36 The Natural History of Individual HIV Infection, 40 Effect of HAART on HIV Progression and Care, 42 Change in Affected Populations and the Impact on Treatment, 50 Conclusion, 63 Findings, 63 References, 64 3 CURRENT FINANCING AND DELIVERY OF HIV CARE 73 Federal Financing of HIV Care, 75 Delivery of HIV/AIDS Care Services, 87 Findings, 100 References, 100
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 4 BARRIERS TO HIV CARE 107 Private Insurance Programs, 107 Medicaid, 109 Medicare, 117 Ryan White CARE Act, 118 Coordination of Care, 127 Access Barriers, 129 Committee Observations and Conclusions, 133 References, 136 5 OPTIONS FOR FINANCING AND DELIVERING HIV CARE 141 Financing Options, 144 Improving the Delivery of HIV Care, 160 Summary, 174 References, 175 6 RECOMMENDATIONS 178 Cost and Health Implications of the HIV Comprehensive Care Program, 180 Recommendations, 193 Conclusion, 208 References, 209 APPENDIXES A Technical Appendix: Estimating the Impact and Cost of Expanded HIV Care Programs 213 B Overview of CARE Act Allocation Formulas 246 C Mental Illness and HIV Comorbidity: A Large and Vulnerable HIV Subpopulation 250 D Financing HIV/AIDS Care: A Quilt with Many Holes 268 E Towards an Understanding of Meeting HIV-Infected Substance Users’ Needs 313 F Committee on Public Financing and Delivery of HIV Care 340 INDEX 347
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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE
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