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.

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. 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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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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Willing is not enough; we must do.”      

                                                —Goethe

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                OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

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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

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

ABBREVIATIONS AND ACRONYMS

SUMMARY

1 INTRODUCTION

The Committee’s Approach to Its Charge

Report Organization

Study Context

Monitoring HIV in the United States

References

2 IMPLICATIONS OF HEALTH CARE REFORM FOR PEOPLE WITH HIV IN THE UNITED STATES

Affordable Care Act

Health Reform and People with HIV

State Implementation

Opportunities, Challenges, and Limitations

References

3 HOW TO OBTAIN NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION FOR PEOPLE WITH HIV IN THE UNITED STATES

How to Establish a Baseline of Health Care Coverage and Utilization Prior to 2014

How to Continue to Obtain Data to Monitor Health Care Coverage and Utilization After 2014

Additional Data Sources

Challenges of Combining Data from Different Sources

References

4 CONCLUSIONS AND RECOMMENDATIONS

References

APPENDIX: Biographical Sketches of Committee Members

Tables, Figures, and Boxes

TABLES

1-1 Number 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

1-2 Females and Males in the United States Living with a Diagnosis of HIV, by Race and Ethnicity, Year-End 2009

1-3 People Living with a Diagnosis of HIV in the United States by Age Group, 2007-2009

1-4 Core Indicators for Clinical HIV Care and Mental Health, Substance Abuse, and Supportive Services, with Rationale

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

3-3 Comparison of National HIV Surveillance System and Medical Monitoring Project Population by Select Characteristics

Appendix 3-1 Number and Percentage of Participants, by Selected Characteristics, Using Unweighted Data—Medical Monitoring Project, United States, 2007

Appendix 3-2 Committee’s Recommended Core Indicators Mapped to Questions from MMP Questionnaire and Medical Record Abstraction Forms

FIGURES

1-1 Total percentage of people living with a diagnosis of HIV in the United States by region, year-end 2009

1-2 Percentage of racial and ethnic populations living with a diagnosis of HIV, year-end 2009

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

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

3-1 MMP sampling design

3-2 MMP facility eligibility determination algorithm

BOXES

S-1 Statement of Task

1-1 National HIV/AIDS Strategy Action Steps and Targets

1-2 Statement of Task

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

Abbreviations and Acronyms

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