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.
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 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. 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.
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Copyright 2012 by the National Academy of Sciences. All rights reserved.
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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.
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. Charles M. Vest 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. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.
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
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
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
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.
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, presentations, 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 contributions 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 provide 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
Population Health and Public Health Practice). Additional staff support included assistance from Laura DeStefano (Office of Reports and Communication), Hope Hare (administrative assistant), Florence Poillon (copyeditor), 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 Andrea 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).
Contents
The Committee’s Approach to Its Charge
Monitoring HIV in the United States
2 IMPLICATIONS OF HEALTH CARE REFORM FOR PEOPLE WITH HIV IN THE UNITED STATES
Health Reform and People with HIV
Opportunities, Challenges, and Limitations
How to Establish a Baseline of Health Care Coverage and Utilization Prior to 2014
Tables, Figures, and Boxes
TABLES
1-3 People Living with a Diagnosis of HIV in the United States by Age Group, 2007-2009
2-1 State Action Toward Creating Health Insurance Exchanges, November 19, 2012
3-1 MMP Patient Sample Sizes by Project Area, 2012
3-2 MMP Facility and Patient (Interview) Response Rates, 2009 and 2010
FIGURES
1-2 Percentage of racial and ethnic populations living with a diagnosis of HIV, year-end 2009
1-4 Continuum of engagement in care
1-5 Engagement in HIV care cascade
1-6 Continuum of HIV care arrow mapped to indicators for HIV care and supportive services
2-1 Pathways to coverage for people with HIV: Prior to the ACA, before 2010
2-2 Pathways to coverage for people with HIV: ACA transition period, 2010-2013
2-3 Pathways to coverage for people with HIV: Full implementation of the ACA, 2014 and beyond
3-2 MMP facility eligibility determination algorithm
BOXES
1-1 National HIV/AIDS Strategy Action Steps and Targets
1-3 Data Collection Activities for Monitoring HIV Care
2-1 Possible Variation in Patient Protection and Affordable Care Act Implementation Across States
3-1 Criteria from Checklist for Observation of MMP Interviews
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 |
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 |