PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE
Securing the Legacy of RyanWhite
THE NATIONAL ACADEMIES PRESS
Washington, D.C. www.nap.edu
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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 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.
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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
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
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
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.
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
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,
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.