MONITORING HIV CARE
IN THE UNITED STATES

A Strategy for Generating National
   Estimates of HIV Care and Coverage

Committee to Review Data Systems for Monitoring HIV Care

Board on Population Health and Public Health Practice


Morgan A. Ford and Carol Mason Spicer, Editors

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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MONITORING HIV CARE IN THE UNITED STATES A Strategy for Generating National Estimates of HIV Care and Coverage Committee to Review Data Systems for Monitoring HIV Care Board on Population Health and Public Health Practice Morgan A. Ford and Carol Mason Spicer, Editors

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. HHSP23320042509XI between the National Academy of Sciences and the White House Office of National AIDS Policy. 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. International Standard Book Number-13: 978-0-309-25715-2 International Standard Book Number-10: 0-309-25715-8 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2012 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 ad- opted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2012. Monitoring HIV Care in the United States: A Strategy for Generating National Estimates of HIV Care and Coverage. Washington, DC: The National Academies Press.

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"Knowing is not enough; we must apply. Willing is not enough; we must do." --Goethe Advising the Nation. Improving Health.

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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 Acad- emy 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 en- gineers. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent 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 Insti- tute 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 Sci- ences 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 Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE TO REVIEW DATA SYSTEMS FOR MONITORING HIV CARE PAUL A. VOLBERDING (Chair), Professor, Department of Medicine, University of California, San Francisco ANGELA A. AIDALA, Associate Research Scientist, Department of Sociomedical Sciences, Joseph L. Mailman School of Public Health, Columbia University, New York, New York DAVID D. CELENTANO, Professor and Chair, Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland MOUPALI DAS, Director of Research, HIV Prevention Section, San Francisco Department of Public Health, California VICTOR G. DeGRUTTOLA, Professor and Chair, Department of Biostatistics, Harvard School of Public Health, Boston, Massachusetts CARLOS DEL RIO, Professor and Chair, Hubert Department of Global Health, Rollins School of Public Health, Emory University, Atlanta, Georgia MARSHALL FORSTEIN, Associate Professor of Psychiatry, Department of Psychiatry, Harvard Medical School, Boston, Massachusetts CARMINE GRASSO, Director (Retired), Care and Treatment Unit, New Jersey Department of Health and Senior Services, Trenton SHANNON HOUSER, Associate Professor, Department of Health Services Administration, University of Alabama, Birmingham JENNIFER KATES, Vice President and Director, Global Health & HIV Policy, The Henry J. Kaiser Family Foundation, Washington, DC ERIKA G. MARTIN, Assistant Professor, Rockefeller College of Public Affairs and Policy, State University of New York at Albany KENNETH H. MAYER, Visiting Professor, Harvard Medical School; Medical Research Director, Fenway Health, Boston, Massachusetts VICKIE M. MAYS, Professor, Departments of Psychology and Health Services, School of Public Health, University of California, Los Angeles DAVID P. PRYOR, West Coast Medical Director, NBC Universal, Universal City, California STEN H. VERMUND, Professor of Pediatrics, Amos Christie Chair in Global Health, and Director, Institute for Global Health, Vanderbilt University, Nashville, Tennessee ADAM B. WILCOX, Associate Professor, Department of Biomedical Informatics, Columbia University, New York, New York DOUGLAS WIRTH, President and Chief Executive Officer, AmidaCare, New York, New York v

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Project Staff MORGAN A. FORD, Study Director CAROL MASON SPICER, Associate Program Officer COLIN F. FINK, Senior Program Assistant ALEJANDRA MARTN, Research Assistant (April-July 2012) FLORENCE POILLON, Copy Editor HOPE HARE, Administrative Assistant ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice vi

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Reviewers This report has been reviewed in draft form 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 that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for 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 individuals for their review of this report: Nanette Benbow, Chicago Department of Public Health Diane Binson, University of California, San Francisco Samuel A. Bozzette, The RAND Corporation Francine Cournos, Columbia University Anne Donnelly, Project Inform Abraham D. Flaxman, University of Washington Stephen J. Gange, Johns Hopkins University Maxine Hayes, Washington State Department of Health Amy Justice, Yale University Michael Lindsay, Emory University School of Medicine Sharon K. Long, Urban Institute Tomas J. Philipson, The University of Chicago Elise D. Riley, University of California, San Francisco Caroline Sabin, University College London vii

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viiiREVIEWERS Fritz Scheuren, University of Chicago Michael T. Wong, Harvard Medical School 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, Flinders University, and Stephen E. Fienberg, Carnegie Mellon University. Appointed by the National Research Council and 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 authoring committee and the institution.

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Acknowledgments The Committee to Review Data Systems for Monitoring HIV Care (the committee) and the Institute of Medicine (IOM) staff would like to thank many individuals for providing information, data, discussions, presenta- tions, and comments throughout this study. The insight, expertise, and information provided by these individuals were essential to the development of the conclusions and recommendations of this report. This report would not have been possible without the generous contri- butions from government officials and survey methods researchers. From the Centers of Disease Control and Prevention, the committee would like to thank James Heffelfinger, Amy Lansky, and Jacek Skarbinski for their responses to inquiries and provision of the most current version of the Medical Monitoring Project data collection instruments and protocol. The committee would also like to thank Sindre Rolstad (AstraZeneca R&D) and Angela Knudson and Jos Zuniga of the International Association of Physicians in AIDS Care for submitting articles requested by the IOM staff and committee. Their contributions provided vital information to help pro- vide a more complete picture of the methods used to develop the estimates of the populations affected most by HIV in the United States. Finally, the committee would like to acknowledge the IOM staff for their support and expertise, in particular, the efforts of Morgan Ford (study director), Carol Mason Spicer (associate program officer), and Alejandra Martn (research assistant). The committee also appreciates the efforts of Colin F. Fink (senior program assistant) for attending to the logistical requirements for the meetings and for aiding in the drafting of the report. The committee also recognizes Rose Marie Martinez (director, Board on ix

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xACKNOWLEDGMENTS Population Health and Public Health Practice). Additional staff support included assistance from Laura DeStefano (Office of Reports and Commu- nication), Hope Hare (administrative assistant), Florence Poillon (copyedi- tor), and Doris Romero (financial associate). The IOM would also like to take this opportunity to thank the support staff for our committee members who were incredibly helpful with the logistical and administrative aspects of this project: Alexandra Blue (Amida Care, Inc.); Donna Hess (Emory University); Carolyn Ingalls (Harvard University); Sue Johnson and An- drea Karis (Fenway Institute); Nancy Leonard (Johns Hopkins University); Taylor Maturo (University of California, San Francisco); Jennifer St. Clair (Vanderbilt); and Alma Yates (University of California, San Francisco).

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Contents ABBREVIATIONS AND ACRONYMS xv SUMMARY 1 1 INTRODUCTION11 The Committee's Approach to Its Charge, 16 Report Organization, 19 Study Context, 20 Monitoring HIV in the United States, 33 References, 45 2IMPLICATIONS OF HEALTH CARE REFORM FOR PEOPLE WITH HIV IN THE UNITED STATES 53 Affordable Care Act, 54 Health Reform and People with HIV, 56 State Implementation, 64 Opportunities, Challenges, and Limitations, 66 References, 69 3HOW TO OBTAIN NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION FOR PEOPLE WITH HIV IN THE UNITED STATES 73 How to Establish a Baseline of Health Care Coverage and Utilization Prior to 2014, 75 xi

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xiiCONTENTS How to Continue to Obtain Data to Monitor Health Care Coverage and Utilization After 2014, 76 Additional Data Sources, 99 Challenges of Combining Data from Different Sources, 110 References, 112 4 CONCLUSIONS AND RECOMMENDATIONS 135 References, 142 APPENDIX: Biographical Sketches of Committee Members 145

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Tables, Figures, and Boxes TABLES 1-1Number and Rates (per 100,000) of People Living with a Diagnosis of HIV in the United States by Regions and Race/Ethnicity, Year-End 2009, 22 1-2Females and Males in the United States Living with a Diagnosis of HIV, by Race and Ethnicity, Year-End 2009, 26 1-3People Living with a Diagnosis of HIV in the United States by Age Group, 2007-2009, 29 1-4Core Indicators for Clinical HIV Care and Mental Health, Substance Abuse, and Supportive Services, with Rationale, 34 2-1State Action Toward Creating Health Insurance Exchanges, November 19, 2012, 67 3-1 MMP Patient Sample Sizes by Project Area, 2012, 82 3-2 MMP Facility and Patient (Interview) Response Rates, 2009 and 2010, 83 3-3 Comparison of National HIV Surveillance System and Medical Monitoring Project Population by Select Characteristics, 92 Appendix 3-1 Number and Percentage of Participants, by Selected Characteristics, Using Unweighted Data--Medical Monitoring Project, United States, 2007, 119 xiii

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xiv TABLES, FIGURES, AND BOXES Appendix 3-2 Committee's Recommended Core Indicators Mapped to Questions from MMP Questionnaire and Medical Record Abstraction Forms, 122 FIGURES 1-1 Total percentage of people living with a diagnosis of HIV in the United States by region, year-end 2009, 24 1-2 Percentage of racial and ethnic populations living with a diagnosis of HIV, year-end 2009, 25 1-3 Percentage of females and males living with a diagnosis of HIV in the United States by racial or ethnic group, year-end 2009, 27 1-4 Continuum of engagement in care, 31 1-5 Engagement in HIV care cascade, 32 1-6 Continuum of HIV care arrow mapped to indicators for HIV care and supportive services, 36 2-1Pathways to coverage for people with HIV: Prior to the ACA, before 2010, 57 2-2Pathways to coverage for people with HIV: ACA transition period, 2010-2013, 58 2-3Pathways to coverage for people with HIV: Full implementation of the ACA, 2014 and beyond, 60 3-1 MMP sampling design, 77 3-2 MMP facility eligibility determination algorithm, 80 BOXES S-1 Statement of Task, 2 1-1 National HIV/AIDS Strategy Action Steps and Targets, 12 1-2 Statement of Task, 14 1-3 Data Collection Activities for Monitoring HIV Care, 40 2-1Possible Variation in Patient Protection and Affordable Care Act Implementation Across States, 65 3-1Criteria from Checklist for Observation of MMP Interviews, 87

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Abbreviations and Acronyms ACA Patient Protection and Affordable Care Act ACSUS AIDS Cost and Services Utilization Survey ADAP AIDS Drug Assistance Program AHRQ Agency for Healthcare Research and Quality AIDS acquired immune deficiency syndrome ART antiretroviral therapy BRFSS Behavioral Risk Factor Surveillance System CCW Chronic Condition Data Warehouse CDC Centers for Disease Control and Prevention CMS Centers for Medicare & Medicaid Services CNICS CFAR [Center for AIDS Research] Network of Integrated Clinical Systems FPL federal poverty level GDP gross domestic product HARS; eHARS HIV/AIDS Reporting System; Enhanced HIV/AIDS Reporting System HCSUS HIV Cost and Services Utilization Study HHS Department of Health and Human Services HIV human immunodeficiency virus HIV RNA viral load xv

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xvi ABBREVIATIONS AND ACRONYMS HIVRN HIV Research Network HMO health maintenance organization HRSA Health Resources and Services Administration IOM Institute of Medicine IRB institutional review board IT information technology MAX Medicaid Analytic eXtract MEPS Medical Expenditure Panel Survey MHF Medical History Form MMP Medical Monitoring Project MRA medical record abstraction MSIS Medicaid Statistical Information System MSM men who have sex with men NA-ACCORD North American AIDS Cohort Collaboration on Research and Design NCHS National Center for Health Statistics NHANES National Health and Nutrition Examination Survey NHAS National HIV/AIDS Strategy NHID Normative Health Information Database (Ingenix) NHIS National Health Interview Survey NHSS National HIV Surveillance System NIH National Institutes of Health NSDUH National Survey on Drug Use and Health OMB Office of Management and Budget ONAP Office of National AIDS Policy (White House) PCIP Preexisting Condition Insurance Plan PDP population definition period ResDAC Research Data Assistance Center RSR Ryan White HIV/AIDS Program Services Report RTS real-time sampling SP surveillance period SPIF Surveillance Period Inpatient Form SPSF Surveillance Period Summary Form SPVF Surveillance Period Visit Form SSDI Social Security Disability Insurance

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ABBREVIATIONS AND ACRONYMS xvii TrOOP true out-of-pocket USPSTF U.S. Preventive Services Task Force VHA Veterans Health Administration VL viral load

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