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Care Without Coverage: Too Little, Too Late (2002)

Chapter: Front Matter

Suggested Citation:"Front Matter." Institute of Medicine. 2002. Care Without Coverage: Too Little, Too Late. Washington, DC: The National Academies Press. doi: 10.17226/10367.
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Committee on the Consequences of Uninsurance Board on Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C.

NATIONAL ACADEMY PRESS • 2101 Constitution Avenue, N.W. • Washington, DC 20418 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. Support for this project was provided by The Robert Wood Johnson Foundation. The views presented in this report are those of the Institute of Medicine Committee on the Consequences of Uninsurance and are not necessarily those of the funding agencies. International Standard Book Number 0-309-08343-5 Library of Congress Control Number 2002105905 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624- 6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP’s home page at www.nap.edu. The full text of this report is available at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2002 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 adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE Shaping the Future for Health

National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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. Bruce M. Alberts 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 achieve- ments of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineer- ing. 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 responsi- bility 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. Kenneth I. Shine is president of the Institute of Medi- cine. 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 Acad- emies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

COMMITTEE ON THE CONSEQUENCES OF UNINSURANCE MARY SUE COLEMAN (Co-chair), President, Iowa Health System and University of Iowa, Iowa City ARTHUR L. KELLERMANN (Co-chair), Professor and Chairman, Department of Emergency Medicine, Director, Center for Injury Control, Emory University School of Medicine, Atlanta, Georgia RONALD M. ANDERSEN, Wasserman Professor in Health Services, Chair, Department of Health Services, Professor of Sociology, University of California, Los Angeles, School of Public Health JOHN Z. AYANIAN, Associate Professor of Medicine and Health Care Policy, Harvard Medical School, Brigham and Women’s Hospital, Boston, Massachusetts ROBERT J. BLENDON, Professor, Health Policy & Political Analysis, Department of Health Policy and Management, Harvard School of Public Health and Kennedy School of Government, Boston, Massachusetts SHEILA P. DAVIS, Associate Professor, The University of Mississippi Medical Center, School of Nursing, Jackson, Mississippi GEORGE C. EADS, Charles River Associates, Washington, D.C. SANDRA R. HERNÁNDEZ, Chief Executive Officer, San Francisco Foundation, California WILLARD G. MANNING, Professor, Department of Health Studies, The University of Chicago, Illinois JAMES J. MONGAN, President, Massachusetts General Hospital, Boston, Massachusetts CHRISTOPHER QUERAM, Chief Executive Officer, Employer Health Care Alliance Cooperative, Madison, Wisconsin SHOSHANNA SOFAER, Robert P. Luciano Professor of Health Care Policy, School of Public Affairs, Baruch College, New York, New York STEPHEN J. TREJO, Associate Professor of Economics, Department of Economics, University of Texas at Austin REED V. TUCKSON, Senior Vice President, Consumer Health and Medical Care Advancement, UnitedHealth Group, Minnetonka, Minnesota EDWARD H. WAGNER, Director, W.A. McColl Institute for Healthcare Innovation, Group Health Cooperative Puget Sound, Seattle, Washington LAWRENCE WALLACK, Director, School of Community Health, College of Urban and Public Affairs, Portland State University, Oregon v

IOM Staff Wilhelmine Miller, Project Co-director Dianne Miller Wolman, Project Co-director Lynne Page Snyder, Program Officer Tracy McKay, Research Associate Ryan Palugod, Senior Project Assistant Consultant Jennifer S. Haas, Assistant Professor of Medicine, San Francisco General Hospital and University of California, San Francisco vi

Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures ap- proved by the NRC’s Report Review Committee. The purpose of this indepen- dent review is to provide candid and critical comments that will assist the institu- tion 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: GERARD ANDERSON, Director, Center for Hospital Finance and Manage- ment, Johns Hopkins Health System, Baltimore, MD JEREMIAH A. BARONDESS, President, New York Academy of Medicine, New York ANDREW BINDMAN, Associate Professor, Epidemiology and Biostatistics, University of California, San Francisco DANA GOLDMAN, Senior Economist, RAND Health Communications, Di- rector, UCLA/RAND Health Services Research Postdoctoral Training Program, Santa Monica NICOLE LURIE, Senior Natural Scientist and Paul O’Neill Alcoa Professor, RAND Corporation, Arlington, VA DIANE MAKUC, Director, Division of Health and Utilization Analysis, Na- tional Center for Health Statistics, Hyattsville, MD DAVID MECHANIC, Director, Institute for Health, Health Care Policy, and Aging Research, Rutgers, The State University of New Jersey – New Brunswick vii

viii REVIEWERS THOMAS SCHELLING, Distinguished University Professor, School of Public Affairs, University of Maryland, College Park RICHARD SORIAN, Director of Public Affairs and Senior Researcher, Center for Studying Health System Change, Washington, DC DAVID R. WILLIAMS, Professor of Sociology and Senior Research Scientist, Survey Research Center, Institute for Social Research, University of Michigan, Ann Arbor Although the reviewers listed above have provided many constructive com- ments and suggestions, they were not asked to endorse the conclusions or recom- mendations nor did they see the final draft of the report before its release. The review of this report was overseen by Hugh H. Tilson, Clinical Professor, School of Public Health, University of North Carolina, Chapel Hill, appointed by the Institute of Medicine and Charles E. Phelps, Provost, Uni- versity of Rochester, appointed by the NRC’s Report Review Committee, who 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.

Foreword Care Without Coverage: Too Little, Too Late appears at a critical juncture in our national health policy debate. It comes when, for the first time, legislators and other policy makers are not disputing the need to help individuals and families maintain health insurance coverage during economic downturns, but only the best strategies for doing so. This second report of the Institute of Medicine (IOM) Committee on the Consequences of Uninsurance confirms what most health care professionals have long believed and the general American public has acted upon: health insurance makes a difference in people’s lives. The public has acted upon this premise by taking up workplace health insurance, buying individual policies, and enrolling in publicly sponsored plans when they qualify for them. This practical evidence of the value Americans place on having health insurance coexists, para- doxically, with the commonly held belief (discussed in depth in the Committee’s first report, Coverage Matters: Insurance and Health Care, and briefly in this report) that Americans without health insurance manage to get the care that they really need. Care Without Coverage should disabuse all of us of this overly optimistic view of how health care operates for the 40 million uninsured Americans. It provides a critical and comprehensive review of research on the effects of health insurance coverage or its lack for adults in the United States. The authoring Committee and its Subcommittee on Health Outcomes for the Uninsured have produced a report that responds with well-documented evidence to the assumption and assertion that health insurance is not an essential component of access to quality health care or to healthy outcomes in America. In this country, we do not see many people dying in the streets because of inaccessible health care, and it has been easy to assume that people without health insurance manage to get the care they need. ix

x FOREWORD The report refutes this assumption by delineating in some detail how the health of adults who do not have health insurance is compromised by their lack of coverage. This report constitutes important new information for national and state policy makers as they deliberate about health, economic, and social welfare policy. What is at stake is not only the health of those without health insurance but our nation’s reputation and character as a fair and compassionate society. The Institute of Medicine is grateful to The Robert Wood Johnson Foun- dation for supporting this series of reports addressing the personal and social impacts of uninsurance. Kenneth I. Shine, M.D. President, Institute of Medicine May 2002

Preface This is the second report in a series of six that the Institute of Medicine (IOM) Committee on the Consequences of Uninsurance is issuing. The Committee’s first report, Coverage Matters: Insurance and Health Care, was released in October 2001. It provides an overview of health insurance in the United States, describes the dynamic and often unstable nature of coverage, identifies the characteristics of Americans who are likely to lack health insurance, and delineates the scope of the problem of uninsurance in this country. Coverage Matters is a timely contribution to the ongoing policy debates about health insurance, and we commend our initial report to your attention along with this current one. Care Without Coverage: Too Little, Too Late builds on the foundation of infor- mation and analysis laid in the first report and examines the question of the health consequences for adults who lack health insurance. Care Without Coverage is based on a focused and critical review of clinical and epidemiological research that sheds light on the question of whether and how having health insurance or lacking it affects the care adults receive and their health status as a result. The Committee’s work led it to the conclusion that health insurance does, indeed, make a significant difference in the health of American adults and that uninsured adults experience worse health as a consequence of their lack of coverage. The research, analysis, and preparation of Care Without Coverage involved the committed efforts of Committee members, IOM staff, and consultants to the project. The Subcommittee on Health Outcomes for the Uninsured, chaired by Edward Wagner, designed and conducted the critical review of research studies upon which the Committee based its findings and conclusions. Committee mem- bers Ronald Andersen, John Ayanian, and Edward Wagner were joined on the subcommittee by Paula Diehr, David Meltzer, Cynthia Mulrow, and Robin xi

xii PREFACE Weinick, members who enhanced and deepened the expertise available to the Committee in its work on this study. We are deeply indebted to the intensive efforts of the Subcommittee in the analysis and drafting of this report. IOM staff members Wilhelmine Miller, the principal analyst on this report, Tracy McKay, Lynne Snyder, Dianne Wolman and Ryan Palugod supported the Committee and Subcommittee in all aspects of their work, and this report reflects their dedication and initiative. As primary consultant to the Committee, Jennifer Haas helped to clarify the complex issues of the overlapping influence of race and ethnicity, socioeconomic status, and health insurance on health outcomes, and we are grate- ful for her generous participation in the Committee’s work. We hope that Care Without Coverage: Too Little, Too Late will contribute to the current public examination of options for the stabilization and expansion of health insurance coverage and improvements in access to care for all of our nation’s people. The Committee’s next report, which examines impacts of uninsurance on the family and health outcomes for children, pregnant women, and newborns, will be released this fall. The final three Committee reports—on community impacts of uninsured populations, societal economic costs, and mod- els and criteria for health financing reforms—will be released in the winter, spring, and fall of 2003, respectively. Each of these reports will provide policy makers and the American public with solid new information and insights to inform decision making about health insurance coverage at every level. Finally, we would like to thank The Robert Wood Johnson Foundation for its continued support of the Committee’s work. Mary Sue Coleman, Ph.D. Co-chair Arthur Kellermann, M.D., M.P.H. Co-chair May 2002

Acknowledgments Care Without Coverage: Too Little, Too Late benefited from the contributions of many people. The Committee takes this opportunity to recognize those who helped it develop the analyses on which the report is based. The Committee particularly acknowledges the members of the Subcommit- tee on Health Outcomes for the Uninsured, which developed this report: Edward Wagner (chair), Ronald Andersen, John Ayanian, Paula Diehr, David Meltzer, Cynthia Mulrow, and Robin Weinick. All members of the Subcommittee con- tributed much time and advice in designing the critical literature review that supports this report’s findings and conclusions, and in reviewing and critiquing scores of primary research articles themselves. Jennifer Haas served as a principal consultant to the Subcommittee and, with Nancy Adler, professor of medical psychology at the University of California at San Fransisco (UCSF) and chair of the MacArthur Research Network on Socioeconomic Status and Health, prepared a background paper that analyzed how race, ethnicity, and socioeconomic factors contribute to differences in health outcomes and how these factors should be taken into account in interpreting findings about health insurance effects. Jennifer generously gave her time for conference calls and meetings during the preparation of this report, and her expertise informs it throughout. Michael Feuerstein, professor of medical and clinical psychology, preventive medicine and biometrics at the Uniformed Services University of the Health Sciences, Bethesda, Maryland, contributed his time and expertise to the Commit- tee by analyzing and synthesizing the research on mental health care and outcomes and health insurance. Linda Kohn and Elaine Swift, senior program officers in the Division of Health Care Services, Institute of Medicine, also participated in the xiii

xiv ACKNOWLEDGMENTS primary literature review and evaluation effort, and advised project staff on its interpretation. Consulting editor Cheryl Ulmer assisted in preparation of the Executive Summary. Highly expert and accomplished consultants were enlisted in the effort to critically review more than 130 research studies within a six-week time frame last summer. Consultants to the Committee who served in this capacity were Margot Kushel, assistant professor of medicine, UCSF; Marcia Polansky, associate profes- sor of biostatistics, Drexel University; Joshua Sarver, Center for Health Care Research and Policy, Case Western Reserve University; and Dean Schillinger, associate professor of medicine, UCSF. The Committee is very grateful for their thoughtful and thorough critiques and their willingness to contribute to this project. The Committee recognizes the hard work of staff at the Institute of Medicine. This work is conducted under the guidance of Janet Corrigan, director, Board on Health Care Services. All members of the project team, directed by Wilhelmine Miller and Dianne Wolman, contributed to this report. Wilhelmine was lead staff in working with the Subcommittee and Committee in developing and managing the critical literature review and in drafting Care Without Coverage. Dianne and Program Officer Lynne Snyder reviewed and edited multiple drafts and back- ground documents and contributed in many ways to the final report. In addition to summarizing studies and collecting the large number of articles and references acquired for this report, Research Associate Tracy McKay resourcefully con- ducted numerous systematic literature searches under the Subcommittee’s direc- tion and identified many published studies that might otherwise have been missed. She also prepared the manuscript for publication. Senior Project Assistant Ryan Palugod efficiently supported communications with Committee members, handled meeting logistics, and managed the numerous consultancy arrangements related to the literature review. Funding for the project comes from The Robert Wood Johnson Foundation (RWJF). The committee extends special thanks to Steven Schroeder, president, and Anne Weiss, senior program officer, RWJF, for their continuing support and interest in this project. Finally, the Committee would like to thank co-chairs Mary Sue Coleman and Arthur Kellermann for their guidance and Subcommittee Chair Edward Wagner for his leadership in the research and development of Care Without Coverage.

Contents EXECUTIVE SUMMARY 3 Assessing the Impact of Health Insurance on Health, 5 Effects of Health Insurance on Specific Health Conditions, 7 General Health Outcomes, 13 The Difference Coverage Could Make to the Health of Uninsured Adults, 14 1 INTRODUCTION 17 Scope of the Report, 19 Definitions, 20 A Conceptual Framework for Understanding the Effects of Health Insurance Status, 21 Organization of the Report, 24 2 MECHANISMS AND METHODS: LOOKING AT THE IMPACT OF HEALTH INSURANCE ON HEALTH 25 Mechanisms and Measures of Access to Health Care, 26 Methodology and Measurement of Health Insurance Effects, 30 Methods of Systematic Literature Review and Synthesis, 40 3 EFFECTS OF HEALTH INSURANCE ON HEALTH 47 Primary Prevention and Screening Services, 48 Cancer Care and Outcomes, 52 xv

xvi CONTENTS Chronic Disease Care and Outcomes, 57 Hospital-Based Care, 72 General Health Outcomes, 80 Conclusion, 86 4 THE DIFFERENCE COVERAGE COULD MAKE TO THE HEALTH OF UNINSURED ADULTS 91 Adults Most at Risk of Poor Health Outcomes, 92 Features of Health Insurance That Improve Health-Related Outcomes, 98 Insuring the Uninsured: Improving Health Outcomes, 101 APPENDIXES A A Conceptual Framework for Evaluating the Consequences of Uninsurance: A Cascade of Effects 105 B Primary Research Literature Review 109 C Glossary and Acronyms 155 D Estimates of Excess Mortality Among Uninsured Adults 161 E Biographical Sketches 167 REFERENCES 177

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Many Americans believe that people who lack health insurance somehow get the care they really need. Care Without Coverage examines the real consequences for adults who lack health insurance. The study presents findings in the areas of prevention and screening, cancer, chronic illness, hospital--based care, and general health status. The committee looked at the consequences of being uninsured for people suffering from cancer, diabetes, HIV infection and AIDS, heart and kidney disease, mental illness, traumatic injuries, and heart attacks. It focused on the roughly 30 million -- one in seven--working--age Americans without health insurance. This group does not include the population over 65 that is covered by Medicare or the nearly 10 million children who are uninsured in this country. The main findings of the report are that working-age Americans without health insurance are more likely to receive too little medical care and receive it too late; be sicker and die sooner; and receive poorer care when they are in the hospital, even for acute situations like a motor vehicle crash.

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