The Unequal Burden of Cancer

An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved

M. Alfred Haynes and Brian D. Smedley, Editors

Committee on Cancer Research Among Minorities and the Medically Underserved

Health Sciences Policy Program

Health Sciences Section

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.
1999



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The Unequal Burden of Cancer An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved M. Alfred Haynes and Brian D. Smedley, Editors Committee on Cancer Research Among Minorities and the Medically Underserved Health Sciences Policy Program Health Sciences Section INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1999

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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. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support for this project was provided by funds from the National Institutes of Health (Contract No. N01-OD-4-2139). The views presented in this report are those of the Committee on Cancer Research Among Minorities and the Medically Underserved and are not necessarily those of the funding organization. Library of Congress Cataloging-in-Publication Data The unequal burden of cancer : an assessment of NIH research and programs for ethnic minorities and the medically underserved / M. Alfred Haynes and Brian D. Smedley, editors ; Committee on Cancer Research among Minorities and the Medically Underserved, Health Sciences Policy Program, Health Sciences Section, Institute of Medicine. p. cm. Includes bibliographical references (p. ) and index. ISBN 0-309-07154-2 (hard) 1. Cancer—Research—Government policy—United States. 2. Minorities—Diseases—Research—Government policy—United States. 3. Poor—Diseases—Research—Government policy—United States. 4. National Institutes of Health (U.S.) I. Haynes, M. Alfred. II. Smedley, Brian D. III. Institute of Medicine (U.S.) Committee on Cancer Research among Minorities and the Medically Underserved. RC267 .A77 1999 362.1′96994′008900973—dc21 99-6105 The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved is available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Lock Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's on-line bookstore at: www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www2.nas.edu/iom. Copyright 1999 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 image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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COMMITTEE ON CANCER RESEARCH AMONG MINORITIES AND THE MEDICALLY UNDESERVED M. ALFRED HAYNES (Chair), Former President and Dean, Drew Postgraduate Medical School, and Former Director, Drew-Meharry-Morehouse Consortium Cancer Center, Rancho Palos Verdes, California REGINA BENJAMIN, Physician, Bayou La Batre Rural Health Clinic, Inc., Bayou La Batre, Alabama CHARLES L. BENNETT, Director of Outcomes Research, Robert Lurie Cancer Center, Northwestern University, and VA Chicago Health Care Systems BARUCH S. BLUMBERG, Fox Chase Distinguished Scientist, Fox Chase Cancer Center, Philadelphia MOON S. CHEN, JR., Professor and Chair, Division of Health Behavior and Health Promotion, School of Public Health, College of Medicine and Public Health, Ohio State University GILBERT FRIEDELL, Director for Cancer Control, University of Kentucky ANNA R. GIULIANO, Assistant Professor of Epidemiology, Arizona Prevention Center, Director, Minority Cancer Prevention and Control Program, Arizona Cancer Center, University of Arizona JAMES W. HAMPTON, Medical Director, Troy and Dollie Smith Cancer Center at Integris Baptist Medical Center, Clinical Professor of Medicine, University of Oklahoma College of Medicine, and Cancer Care Associates, Oklahoma City VICTOR A. McKUSICK (Vice Chair) University Professor of Medical Genetics, Johns Hopkins Hospital, Johns Hopkins University School of Medicine LAWRENCE MIIKE, Director, Department of Health, State of Hawaii, Honolulu SARAH MOODY-THOMAS, Associate Director, Stanley S. Scott Cancer Center, and Professor, Department of Psychiatry, Louisiana State University Medical Center, New Orleans LARRY NORTON, Associate Professor of Oncology, Mount Sinai School of Medicine, and Head, Breast Disease Management Team, Memorial Sloan-Kettering Cancer Center, New York MADISON POWERS, Senior Research Scholar, Kennedy Institute of Ethics, Georgetown University SUSAN C. SCRIMSHAW, Dean, School of Public Health, and Professor, Community Health Sciences and Anthropology, University of Illinois at Chicago

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FERNANDO M. TREVINO, Professor and Chairman, Department of Public Health and Preventive Medicine, Health Science Center at Forth Worth, University of North Texas Committee Liaisons ADA SUE HINSHAW, Dean, School of Nursing, University of Michigan AMELIE G. RAMIREZ, Associate Professor and Associate Director, Center for Cancer Control Research, Baylor College of Medicine Study Staff BRIAN SMEDLEY, Study Director YVETTE BENJAMIN, Research Associate (through 10/98) THELMA COX, Senior Project Assistant Consultant TED CRON Copy Editors MICHAEL EDINGTON MICHAEL HAYES Section Staff CHARLES H. EVANS, JR., Head, Health Sciences Section ANDREW M. POPE, Director, Health Policy Program LINDA DEPUGH, Administrative Assistant JAMAINE TINKER, Financial Associate (through 10/98)

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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 NRC's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making the 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 participation in the review of this report: Mary Ellen Avery, M.D., Harvard Medical School; Lester Breslow, M.D., M.P.H., University of California at Los Angeles School of Public Health; H. Jack Geiger, M.D., City University of New York Medical School; Reginald C. S. Ho, M.D., Straub Clinic and Hospital, Honolulu, Hawaii; Frederick P. Li, M.D., Harvard Medical School; Sandra Millon-Underwood, Ph.D., R.N., University of Wisconsin School of Nursing; Geraldine Padilla, Ph.D., Jonsson Comprehensive Cancer Center, University of California at Los Angeles; Frank Talamantes, Ph.D., Sinsheimer Laboratories, University of California at Santa Cruz; and Richard Warnecke, Ph.D., School of Public Health and College of Urban Planning and Public Administration, University of Illinois at Chicago. While the individuals listed above have provided constructive comments and suggestions, it must be emphasized that responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Preface In 1971, President Richard M. Nixon signed the National Cancer Act and assigned the leadership for the "War on Cancer" to the National Cancer Institute (NCI). Since that time, NCI has vigorously supported research that has broadened our understanding of the mechanisms of carcinogenesis and has led the way to advances in prevention, control, and treatment of a disease for which there is increasing demand for a "cure." Congress, and the public at large, are deeply indebted to NCI for its outstanding research leadership, and the results of those efforts are beginning to be more widely recognized. However, Congress has from time to time requested assurance that all segments of the population are benefiting from the results of this research, in accordance with the mission of the National Institutes of Health (NIH) to conduct research to improve the health of all Americans. This study was prompted by a concern for ethnic minority and medically underserved populations that often experience a greater burden of cancer. The committee began its work in late January 1998, and completed its report in the fall of that year. In the process, we received presentations from the director of NCI and several members in leadership positions within the institute. The committee also reviewed numerous documents from NCI and other NIH institutes. To better understand how NIH's work has been received by important constituencies, the committee also conducted a survey of researchers involved in relevant research and heard from a number of community organizations with specific interests in cancer among these populations. Our findings and recommendations are provided in this report, which is organized as follows:

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a brief history of the nation's struggle against cancer (Chapter 1); information on the burden of cancer among ethnic minorities and the medically underserved, and recommendations addressing the quality and scope of the data on which cancer research for these populations is based (Chapter 2); a review of research and training programs and activities on ethnic minorities and medically underserved populations at NIH and recommendations on how these programs and activities could be improved (Chapters 3 through 6); and, an annual reporting mechanism on the status of cancer research among ethnic minorities and the medically underserved at NIH, and recommendations on what these reports should contain (Chapter 7). The committee was impressed by the momentum around these issues at NCI. In fact, some of the recommendations were already in the process of being implemented before the report was completed. The committee has felt free to make its recommendations always with the best interests of the populations concerned in mind and with the hope that the already excellent leadership provided by NCI will become even better. The committee deeply appreciates the cooperation received from NCI and the other institutes at NIH in providing information we requested, and then subsequently providing still more information as the first set led to further requests. These efforts were graciously coordinated by Dr. Otis Brawley of NCI. Dr. Delores Parron of the National Institute of Mental Health served as the study's project officer and was instrumental in facilitating the project's timely completion. The committee is also grateful to the National Center for Health Statistics for documenting the methodology and caveats of an alternative method for assessing progress by considering the potential reduction of cancer deaths if the best rate among all ethnic groups were used as a reference. Finally, we were fortunate to receive the active input and contributions of Dr. Amelie Ramirez, a member of the Institute of Medicine and National Research Council's National Cancer Policy Board. The work of the committee was a pleasure because of the enthusiasm and commitment of its members, greatly facilitated by an outstanding project director and a dedicated staff. All that is now necessary to complete our feeling of satisfaction is for the recommendations to continue to be implemented in a timely fashion so that all ethnic groups of our one race, the human race, are able to benefit from a reduction in what promises to be the leading cause of death in the twenty-first century. M. ALFRED HAYNES, M.D. CHAIR

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Contents     Executive Summary   1 1   The Struggle Against Cancer   16     The Focus on Cancer   17     Progress Reports   25     Finally, Some Good News   28     The Healthy People 2000 Review   29     More Good News   30     The Fundamental Questions   30 2   The Burden Of Cancer Among Ethnic Minorities And Medically Undeserved Populations   33     Defining the Populations   33     The Burden of Cancer Among Ethnic Minorities and Medically Underserved Populations   45     Future Directions in Assessing the Burden of Cancer Among Ethnic Minority and Medically Underserved Groups   76     Summary   91 3   Overview Of Programs Of Research On Ethnic Minority And Medically Underserved Populations At The National Institutes Of Health   93     Overview of NIH Appropriations and Funding for Cancer Research   94     Cancer Research at Other ICDs   96

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    Office of Research on Minority Health   97     Overview of Scientific Infrastructure at NCI,   104     NCI FY 1997 Program and Resources Allocated to Addressing Ethnic Minority and Medically Underserved Populations   107     Allocation of NCI Resources for Research on Ethnic Minority and Medically Underserved Groups   138     Research on Cancer Among Ethnic Minority and Medically Underserved Populations at Other ICDs   141     Summary and Recommendations   150 4   Evaluation Of Priority Of Setting And Programs Of Research On Ethnic Minority And Medically Underserved Populations At The National Institutes Of Health   154     Survey of Research Stakeholders   155     What Are the Needs of Cancer Survivors in Ethnic Minority and Medically Underserved Communities?   162     Mechanisms for Ethnic Minority Community and Researcher Input into the Cancer Agenda   169     Special Populations and Priority Setting at NCI   174     Summary   185 5   Advancing State-Of-The-Art Treatment And Prevention   187     Recruitment and Retention of Ethnic Minority and Medically Underserved Participants in Clinical Cancer Research   188     Ethnic Minority Accrual in NIH-Sponsored Trials   193     How Can Low Ethnic Minority Accrual Be Addressed?   210     Dissemination of Research Findings to Ethnic Minority and Medically Underserved Communities   214     Recommendations   226     Summary   228 6   Cancer Survivorship   230     Review of Related Literature   231     NIH and NCI Programs and Research Outcomes Relevant to Cancer Survivorship   234     Needs of Ethnic Minority and Medically Underserved Cancer Survivors   239     Recommendations   242

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7   Monitoring And Reporting   246     Reporting of Results   248     Special Process Items   257     Types and Timing of Reports   258     Summary   259     REFERENCES   261     APPENDIXES         A Methodology   277     B A New Agenda for Cancer Control Research: Report of the Cancer Control Review Group   282     C National Cancer Institute Health Promotion Branch Publications and Public Service Announcements   283     D Survey of Ethnic Minority Researchers and of Researchers Interested in Cancer Among Ethnic Minority and Medically Underserved Groups   285     E National Institutes of Health and National Cancer Institute Background Material   293     F Information Provided by the National Center for Health Statistics on the Potential Reductions in Mortality from Cancer, by Ethnic Group   295     COMMITTEE AND STAFF BIOGRAPHIES   315     INDEX   323

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