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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
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Functioning in accordance with general policies determined by the Academy, the
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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 MARTÍN, 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 José 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
Martín (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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