The Impact of the
Affordable Care Act on
Cancer Prevention and Cancer Care
PROCEEDINGS OF A WORKSHOP
Francis Amankwah, Erin Balogh, Melissa Maitin-Shepard, and
Sharyl Nass, Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30120F00089) and Contract No. HHSN263201800029I (Task Order No. HHSN26300008) with the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Merck & Co., Inc., National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc., Sanofi, and Society for Immunotherapy of Cancer. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-27381-7
International Standard Book Number-10: 0-309-27381-1
Digital Object Identifier: https://doi.org/10.17226/26400
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Impact of the Affordable Care Act on cancer prevention and cancer care: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26400.
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WORKSHOP PLANNING COMMITTEE1
RANDALL A. OYER (Co-Chair), Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and President, Association of Community Cancer Centers
DEBORAH SCHRAG2 (Co-Chair), Chief, Division of Population Sciences, Dana-Farber Cancer Institute, and Professor of Medicine, Harvard Medical School
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; Bunn Chair of Cancer Research and Deputy Director, University of Colorado Comprehensive Cancer Center
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
NICOLE HUBERFELD, Professor of Law, Boston University School of Law and School of Public Health
MIMI HUIZINGA,3 Vice President and Head, U.S. Oncology Medical, Novartis Oncology
ROY A. JENSEN, Professor of Pathology and Laboratory Medicine; William R. Jewell, M.D. Distinguished Masonic Professor of Cancer Research; Director, The University of Kansas Cancer Center; Director, Kansas Masonic Cancer Research Institute, The University of Kansas Medical Center; and Immediate Past President, Association of American Cancer Institutes
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
2 As of October 2021, Deborah Schrag became Chair of the Department of Medicine at Memorial Sloan Kettering Cancer Center.
3 As of February 2022, Mimi Huizinga became Senior Vice President and Head of Medical Affairs at Immunogen, Inc.
NEAL J. MEROPOL, Vice President of Research Oncology, Flatiron Health; and Adjunct Professor, Case Comprehensive Cancer Center
CLEO A. RYALS,4 Associate Professor, Department of Health Policy Management, Gillings School of Global Public Health; and Director, Centering Racial Equity in Data Science Initiative, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill
ROBERT A. WINN, Director, Massey Cancer Center; and Senior Associate Dean for Cancer Innovation, Professor of Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, School of Medicine, Virginia Commonwealth University
ROBIN YABROFF, Scientific Vice President of Health Services Research, American Cancer Society
Project Staff
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant
LORI BENJAMIN BRENIG, Research Associate
ANNALEE GONZALES, Administrative Assistant
KAFAYAT MAHMOUD, Christine Mirzayan Science & Technology Policy Fellow (September–November 2021)
MICAH WINOGRAD, Senior Finance Business Partner
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL NASS, Co-Director, National Cancer Policy Forum; and Senior Director, Board on Health Care Services
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4 As of January 2022, Cleo Ryals became Head of Health Equity and Health Disparities Research at Flatiron Health.
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer, Emeritus, Dana-Farber Cancer Institute; and Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School
PETER C. ADAMSON, Global Head, Oncology Development and Pediatric Innovation, Sanofi
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Center; and Affiliate Professor, Department of Biostatistics, University of Washington
KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center
SMITA BHATIA, Professor and Vice Chair of Outcomes for Pediatrics; Gay and Bew White Endowed Chair in Pediatric Oncology; Director, Institute for Cancer Outcomes and Survivorship; and Associate Director for Outcomes Research, Comprehensive Cancer Center, The University of Alabama at Birmingham
CHRIS BOSHOFF, Chief Development Officer, Oncology, Global Product Development, Pfizer Inc.
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; Bunn Chair of Cancer Research and Deputy Director, University of Colorado Comprehensive Cancer Center
OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology, Bloomberg School of Public Health and Department of Oncology, School of Medicine, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University
CYNTHIA BROGDON, Head, U.S. Oncology Portfolio Strategy, Bristol Myers Squibb
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1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
WILLIAM G. CANCE, Chief Medical and Scientific Officer, American Cancer Society
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
CHRISTINA CHAPMAN, Assistant Professor of Radiation Oncology, University of Michigan
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Raisbeck Endowed Chair for Collaborative Research, Senior Vice President, Director, and Professor, Clinical Research Division, Fred Hutchinson Cancer Center; and Head, Department of Medicine, Division of Medical Oncology, University of Washington
JAMES H. DOROSHOW, Director, Division of Cancer Treatment and Diagnosis; Deputy Director for Clinical and Translational Research; and Head, Oxidative Signaling and Molecular Therapeutics Group, National Cancer Institute
NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
SCOT W. EBBINGHAUS, Vice President and Therapeutic Area Head, Oncology Clinical Research, Merck Research Laboratories
KOJO S. J. ELENITOBA-JOHNSON, Professor, Perelman School of Medicine; and Director, Center for Personalized Diagnostics and Division of Precision and Computational Diagnostics, University of Pennsylvania
STANTON L. GERSON, Director (acting), Case Comprehensive Cancer Center; Dean, School of Medicine and Senior Vice President, Medical Affairs; Director, National Center for Regenerative Medicine, Distinguished University Professor and Asa & Patricia Shiverick–Jane B. Shiverick (Tripp) Professor, Hematology Oncology and Professor of Medicine, Ocology, Case Western Reserve University
JULIE R. GRALOW, Executive Vice President and Chief Medical Officer, American Society of Clinical Oncology
ROY S. HERBST, Ensign Professor of Medicine and Professor of Pharmacology; Director, Center for Thoracic Cancers; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital; and Associate Cancer Center Director, Translational Science, Yale School of Medicine
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
CHANITA HUGHES-HALBERT, Vice Chair for Research and Professor, Department of Preventive Medicine; and Associate Director for Cancer Equity, Norris Comprehensive Cancer Center, University of Southern California
ROY A. JENSEN, Professor of Pathology and Laboratory Medicine; William R. Jewell, M.D. Distinguished Masonic Professor of Cancer Research; Director, The University of Kansas Cancer Center; Director, Kansas Masonic Cancer Research Institute, The University of Kansas Medical Center; and Immediate Past President, Association of American Cancer Institutes
RANDY A. JONES, Professor and Associate Dean for Partner Development and Engagement, University of Virginia School of Nursing; and Assistant Director, Community Outreach and Engagement, Emily Couric Clinical Cancer Center, University of Virginia
BETH Y. KARLAN, Vice Chair, Women’s Health Research; Professor, Department of Obstetrics and Gynecology, David Geffen School of Medicine; and Director, Cancer Population Genetics, Jonsson Comprehensive Cancer Center, University of California, Los Angeles
SAMIR N. KHLEIF, Director, Jeannie and Tony Loop Immuno-Oncology Lab; Biomedical Scholar and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center
MIA LEVY, Chief Medical Officer, Foundation Medicine
SCOTT M. LIPPMAN, Director, Moores Cancer Center; Distinguished Professor of Medicine, Senior Associate Dean, and Associate Vice Chancellor for Cancer Research and Care; and Chugai Pharmaceutical Chair in Cancer, University of California, San Diego
LARISSA NEKHLYUDOV, Professor of Medicine, Harvard Medical School; Internist, Brigham and Women’s Hospital; and Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute
RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and President, Association of Community Cancer Centers
CLEO A. RYALS, Head of Health Equity and Health Disparities Research, Flatiron Health
RICHARD L. SCHILSKY, Principal Investigator, American Society of Clinical Oncology Targeted Agent and Profiling Utilization Registry Study; and Professor Emeritus, University of Chicago
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, U.S. Food and Drug Administration
SUSAN M. SCHNEIDER, Associate Professor Emerita, School of Nursing, Duke University
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
HEIND SMITH, Vice President, Center of Operations and Research Excellence, U.S. Clinical Development and Medical Oncology, Novartis
RACHEL SOLOMON, Senior Director of Policy, Cancer Policy Institute, Cancer Support Community
LARA STRAWBRIDGE, Director, Division of Ambulatory Payment Models, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine and Pharmaceutical Science; and Director, Holden Comprehensive Cancer Center, The University of Iowa
ROBERT A. WINN, Director, Massey Cancer Center; and Senior Associate Dean for Cancer Innovation, Professor of Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, School of Medicine, Virginia Commonwealth University
National Cancer Policy Forum Staff
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant
LORI BENJAMIN BRENIG, Research Associate
ANNALEE GONZALES, Administrative Assistant
MICAH WINOGRAD, Senior Finance Business Partner
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL J. NASS, Co-Director, National Cancer Policy Forum; and Senior Director, Board on Health Care Services
Reviewers
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by LESLIE SIM, National Academies of Sciences, Engineering, and Medicine. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
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Acknowledgments
Support from the many annual sponsors of the National Academies of Sciences, Engineering, and Medicine’s National Cancer Policy Forum is crucial to the work of the forum. Federal sponsors include the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health. Nonfederal sponsors include the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Merck & Co., Inc., National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc, Sanofi, and Society for Immunotherapy of Cancer.
The forum wishes to express its gratitude to the expert speakers whose presentations helped to highlight the current evidence base on the effects of the Affordable Care Act on people at risk for or living with cancer, as well as gaps in the evidence base, and to provide insight into remaining policy challenges that could inform future efforts to improve and support the delivery of high-quality cancer care across the care continuum.
The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda.
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Contents
CONSUMER PROTECTIONS IN THE ACA
Coverage for Preexisting Conditions
MEDICAID EXPANSION AND NON-EXPANSION
The Status of Medicaid Coverage Before the ACA
Current Status and Paths to Medicaid Expansion
THE IMPACT OF THE ACA ON CANCER PREVENTION AND CARE
Utilization of Cancer Screening, Prevention, and Treatment Services
Decreasing Inequities in Coverage of Cancer Screening and Surveillance
Addressing the Remaining Barriers to Coverage of Preventive Services
PROTECTIONS FOR ADOLESCENT AND YOUNG ADULT POPULATIONS
Impact of the ACA on Children and Adolescents and Young Adults with Cancer
IMPACT OF ORGANIZATIONS CREATED BY THE ACA ON CANCER RESEARCH AND CARE
Options for Improving Alternative Payment Methodologies
Cancer-Related Initiatives at PCORI
Boxes and Figures
BOXES
1 Key Patient Protections in the Patient Protection and Affordable Care Act
4 Examples of States’ Experiences in Moving Toward Expansion
5 Key Takeaways from the Evaluation of the Oncology Care Model (performance periods 1–5)
FIGURES
1 Map showing the status of Medicaid expansion by state, as of March 1, 2021
2 Map showing state-by-state coverage of lung cancer screening in Medicaid fee-for-service programs
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Acronyms and Abbreviations
| ACA | Patient Protection and Affordable Care Act |
| ACO | accountable care organization |
| APHA | American Public Health Association |
| ASCO | American Society of Clinical Oncology |
| AYA | adolescent and young adult |
| BIPOC | Black, Indigenous, and people of color |
| CMMI | Center for Medicare & Medicaid Innovation |
| CMS | Centers for Medicare & Medicaid Services |
| CQI | Collaborative Quality Initiative |
| EHR | electronic health record |
| FPL | federal poverty level |
| FQHC | federally qualified health center |
| HHS | U.S. Department of Health and Human Services |
| MEOS | Monthly Enhanced Oncology Services |
| NCI | National Cancer Institute |
| OCM | Oncology Care Model |
| PCORI | Patient-Centered Outcomes Research Institute |
| PLACER | Phased Large Awards for Comparative Effectiveness Research |
| RO | radiation oncology |
| USPSTF | U.S. Preventive Services Task Force |
