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Erin Balogh, Margie Patlak, and Sharyl J. Nass, Rapporteurs National Cancer Policy Forum Board on Health Care Services

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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 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. This activity was supported by Contract Nos. HHSN261200900003C and 200-2011- 38807 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention, respectively. In addition, the National Cancer Policy Forum is supported by the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol-Myers Squibb, C-Change, the CEO Roundtable on Cancer, GlaxoSmithKline, Novartis Oncology, the Oncology Nursing Society, and Sanofi Oncology. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13:  978-0-309-26944-5 International Standard Book Number-10:­  0-309-26944-X Additional copies of this workshop summary are available for sale 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 2013 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover credit: Design by Casey Weeks. 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. Suggested citation: IOM (Institute of Medicine). 2013. Delivering affordable cancer care in the 21st century: Workshop summary. Washington, DC: The National Academies Press.

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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 Academy has a man- date 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 N ­ ational 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. www.national-academies.org

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WORKSHOP PLANNING COMMITTEE1 PATRICIA A. GANZ (Co-Chair), Professor, University of California, Los Angeles, School of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center YA-CHEN TINA SHIH (Co-Chair), Director, Program in the Economics of Cancer, University of Chicago, IL PETER B. BACH, Attending Physician, Memorial Sloan-Kettering Cancer Center, New York, NY EZEKIEL J. EMANUEL, Diane v.S. Levy and Robert M. Levy University Professor, Vice Provost for Global Initiatives, University of Pennsylvania, Philadelphia THOMAS J. KEAN, President and Chief Executive Officer, C-Change, Washington, DC SCOTT RAMSEY, Director, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center, Seattle, WA LOWELL E. SCHNIPPER, Theodore and Evelyn Berenson Professor of Medicine, Harvard Medical School, Clinical Director, Cancer Center, Chief, Hematology/Oncology, Beth Israel Deaconess Medical Center, Boston, MA DEBORAH SCHRAG, Associate Professor of Medicine, Harvard Medical School, Dana-Farber Cancer Institute, Boston, MA Project Staff ERIN BALOGH, Study Director PAMELA LIGHTER, Research Assistant MICHAEL PARK, Senior Program Assistant SHARYL J. NASS, Director, National Cancer Policy Forum ROGER HERDMAN, Director, Board on Health Care Services 1Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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NATIONAL CANCER POLICY FORUM1 JOHN MENDELSOHN (Chair), Director, Khalifa Institute for Personalized Cancer Therapy, MD Anderson Cancer Center, Houston, TX PATRICIA A. GANZ (Vice Chair), Distinguished University Professor, University of California, Los Angeles, Schools of Medicine & Public Health, Director, Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center AMY P. ABERNETHY, Associate Professor of Medicine, Duke University School of Medicine, and Director, Duke Cancer Care Research Program, Durham, NC RAFAEL G. AMADO, Senior Vice President & Head of R&D, GlaxoSmithKline-Oncology, Collegeville, PA FRED APPELBAUM, Director, Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA PETER B. BACH, Attending Physician, Memorial Sloan-Kettering Cancer Center, New York, NY EDWARD BENZ, JR., President, Dana-Farber Cancer Institute and Director, Harvard Cancer Center, Harvard School of Medicine, Boston, MA MONICA BERTAGNOLLI, Professor of Surgery, Harvard University Medical School, Boston, MA OTIS BRAWLEY, Chief Medical Officer and Executive Vice President, American Cancer Society, Atlanta, GA MICHAEL A. CALIGIURI, Director, Ohio State Comprehensive Cancer Center, Columbus, OH RENZO CANETTA, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb, Wallingford, CT MICHAELE CHAMBLEE CHRISTIAN, Retired, Washington, DC WILLIAM DALTON, Chief Executive Officer, M2Gen Personalized Medicine Institute, Moffitt Cancer Center, Tampa, FL, and Chair, American Association for Cancer Research Science Policy & Legislative Affairs Committee 1Institute of Medicine forums and roundtables do not issue, review, or approve indi- vidual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vi

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WENDY DEMARK-WAHNEFRIED, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center ROBERT ERWIN, President, Marti Nelson Cancer Foundation, Davis, CA ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New Haven, CT THOMAS J. KEAN, President and Chief Executive Officer, C-Change, Washington, DC MICHELLE M. Le BEAU, Arthur and Marian Edelstein Professor of Medicine and Director, Comprehensive Cancer Center, University of Chicago, IL, and President, Association of American Cancer Institutes DOUGLAS R. LOWY, Deputy Director, National Cancer Institute, Bethesda, MD DANIEL R. MASYS, Affiliate Professor, Biomedical Informatics, University of Washington, Seattle MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer, Durham, NC BRENDA NEVIDJON, Clinical Professor and Specialty Director, Nursing & Healthcare Leadership, Duke University School of Nursing, Durham, NC, and Past President, Oncology Nursing Society STEVEN PIANTADOSI, Director, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center, Los Angeles, CA LISA C. RICHARDSON, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA DEBASISH ROYCHOWDHURY, Senior Vice President, Global Oncology, Sanofi Oncology, Cambridge, MA YA-CHEN TINA SHIH, Director, Program in the Economics of Cancer, University of Chicago, IL ELLEN SIGAL, Chairperson and Founder, Friends of Cancer Research, Washington, DC STEVEN STEIN, Senior Vice President, U.S. Clinical Development and Medical Affairs, Novartis Oncology, East Hanover, NJ JOHN A. WAGNER, Vice President, Clinical Pharmacology, Merck and Company, Inc., Rahway, NJ vii

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RALPH R. WEICHSELBAUM, Chair, Radiation and Cellular Oncology, and Director, Ludwig Center for Metastasis Research, The University of Chicago Medical Center, IL JANET WOODCOCK, Director, Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, MD National Cancer Policy Forum Staff SHARYL J. NASS, Director LAURA LEVIT, Program Officer ERIN BALOGH, Associate Program Officer PAMELA LIGHTER, Research Assistant MICHAEL PARK, Senior Program Assistant PATRICK BURKE, Financial Associate SHARON B. MURPHY, Scholar in Residence ROGER HERDMAN, Director, Board on Health Care Services viii

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Reviewers This workshop summary has been reviewed in draft form by individu- als chosen for their diverse perspectives and technical expertise, in accor- dance 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 workshop summary as sound as possible and to ensure that the workshop summary 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 process. We wish to thank the following individuals for their review of this workshop summary: LINDA S. ELTING, The University of Texas MD Anderson Cancer Center ROBERT ERWIN, Marti Nelson Cancer Foundation ROBERT J. GREEN, Cancer Clinics of Excellence JOSEPH LIPSCOMB, Rollins School of Public Health and Winship Cancer Institute, Emory University JEFFREY PEPPERCORN, Duke University Medical Center JOANNE SCHOTTINGER, Southern California Permanente Medical Group ix

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x REVIEWERS Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Melvin Worth. Appointed by the Institute of Medicine, he was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Respon- sibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution.

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Contents INTRODUCTION, 1 A FINANCIAL CRISIS IN HEALTH CARE, 3 Drivers of Health Care Costs, 8 Cancer Care Costs, 9 Financial Burden on Patients with Cancer, 13 Questionable Value, 15 CURRENT CHALLENGES, 16 Inappropriate Incentives, 16 Unrealistic Expectations, 19 Overuse and Misuse of Interventions, 21 Variable Care, Lack of Best Practices, and an Inadequate Evidence Base, 24 Legal and Regulatory Issues, 26 Assessing Value, 27 POSSIBLE SOLUTIONS, 29 Patient and Clinician Communication and Education, 30 Best Practices in Cancer Care, 36 Evidence Base for Clinical Practice and Reimbursement, 48 Financial Incentives Aligned with Affordable, High-Quality Cancer Care, 56 Delivery System and Reimbursement Changes, 60 WRAP-UP, 66 REFERENCES, 67 APPENDIX, 75 xi

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Boxes and Figures BOXES 1 Possible Solutions to Improve the Affordability and Quality of Cancer Care Highlighted by Individual Participants, 4 2 ASCO’s Quality Oncology Practice Initiative (QOPI), 39 3 ASCO’s Top 5 List, 40 4 ASCO’s CancerLinQ Rapid Learning Initiative, 54 FIGURES 1 Total health expenditure per capita and gross domestic product per capita, 2007, 6 2 Projected annual family health insurance premium costs and average household income in the United States, 7 3 Monthly and median costs of cancer drugs at the time of Food and Drug Administration approval, 1965–2008, 11 4 Medicare spending for Part B drugs administered in physicians’ offices or furnished by suppliers, 12 5 Prevalence of high total financial burdens among non-elderly adults by medical condition and insurance status, 14 xiii

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xiv BOXES AND FIGURES 6 Substitution of intensity modulated radiotherapy (IMRT) for 3-D conformal radiotherapy in prostate cancer, 2001–2005, and the rapid adoption of brachytherapy as the sole modality of radiotherapy in breast cancer treatment, 2002–2006, 17 7 Trends in radiology scans in the United States, 1991–2006, 23 8 UnitedHealthcare use of Avastin (bevacizumab), 2009–2011, 38 9 Reduction in diagnoses of colorectal cancers at Kaiser Permanente, 2008–2011, 48 10  Comparison of evidence generation for targeted cancer therapies pre- and post-approval by the Food and Drug Administration, 50 11  Dissemination of accountable care organizations (ACOs) in the United States, 64