Cancer Care in Low-Resource Areas
CANCER TREATMENT, PALLIATIVE CARE, AND
SURVIVORSHIP CARE
PROCEEDINGS OF A WORKSHOP
Erin Balogh, Margie Patlak, and Sharyl J. Nass, Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This project was supported by Contract No. 200-2011-38807 (Task Order No. 0051) and Contract No. HHSN263201200074I (Task Order No. HHSN26300052) 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 for Radiation Oncology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, AstraZeneca, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc. 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: 978-0-309-45799-6
International Standard Book Number-10: 0-309-45799-8
Digital Object Identifier: https://doi.org/10.17226/24743
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2017. Cancer care in low-resource areas: Cancer treatment, palliative care, and survivorship care: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/24743.
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WORKSHOP PLANNING COMMITTEE1
ROBERT W. CARLSON (Co-Chair), Chief Executive Officer, National Comprehensive Cancer Network
RICHARD A. LARSON (Co-Chair), Professor of Medicine and Director, Hematologic Malignancies Clinical Research Program, The University of Chicago
WENDY DEMARK-WAHNEFRIED, Professor and Webb Endowed Chair of Nutrition Sciences, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center
SAMIR N. KHLEIF, Professor of Medicine, Biochemistry, Molecular Biology, and Graduate Studies, Augusta University
MARK LAZENBY, Associate Professor of Nursing, Yale School of Nursing
GRETA MASSETTI, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
WORTA MCCASKILL-STEVENS, Chief, Community Oncology and Prevention Trials Research Group, National Cancer Institute
LOYCE PACE, Executive Director, Global Health Council
KATHLEEN SCHMELER, Associate Professor, Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center
YA-CHEN TINA SHIH, Professor of Health Economics, Chief, Section of Cancer Economics and Policy, Department of Health Services Research, The University of Texas MD Anderson Cancer Center
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
BHADRASAIN VIKRAM, Branch Chief, Clinical Radiation Oncology Branch, National Cancer Institute
___________________
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.
Project Staff
ERIN BALOGH, Senior Program Officer
CYNDI TRANG, Research Assistant
SYLARA MARIE CRUZ, Senior Program Assistant
SHARYL J. NASS, Director, National Cancer Policy Forum
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer Emeritus, Dana-Farber Cancer Institute; Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School
KALD A. ABDALLAH, Oncology External Alliances Leader, U.S. Medical Affairs, AstraZeneca
AMY P. ABERNETHY, Chief Medical Officer, Chief Scientific Officer, and Senior Vice President, Oncology, Flatiron Health
LUCILE L. ADAMS-CAMPBELL, Professor of Oncology, Associate Director for Minority Health and Health Disparities Research, Georgetown University Lombardi Cancer Center
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center; Affiliate Professor, Department of Biostatistics, University of Washington
KENNETH ANDERSON, Kraft Family Professor of Medicine, American Cancer Society Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute
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
CATHY J. BRADLEY, Associate Director, Cancer Prevention and Control, University of Colorado Cancer Center
OTIS W. BRAWLEY, Chief Medical Officer, American Cancer Society
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
CHRISTOPHER R. COGLE, Professor of Medicine, Pierre Chagnon Professor of Stem Cell Biology and Bone Marrow Transplant, University of Florida; Scholar in Clinical Research, Leukemia & Lymphoma Society
___________________
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.
ROGER D. DANSEY, Senior Vice President, Clinical Research–Late Stage Development, Merck
NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Senior Vice President, Director, and Full Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; Head, Department of Medicine, Division of Medical Oncology, University of Washington
GEORGE D. DEMETRI, Professor of Medicine and Director, Ludwig Center, Harvard Medical School; Senior Vice President for Experimental Therapeutics, Dana-Farber Cancer Institute; Associate Director for Clinical Sciences, Dana-Farber/Harvard Cancer Center
JAMES H. DOROSHOW, Deputy Director for Clinical and Translational Research, National Cancer Institute
KOJO S. J. ELENITOBA-JOHNSON, Professor, Perelman School of Medicine, Founding Director, Center for Personalized Diagnostics and Division of Precision and Computational Diagnostics, University of Pennsylvania
STANTON L. GERSON, President, Association of American Cancer Institutes; Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; Director, University Hospitals Seidman Cancer Center
LORI HOFFMAN HŌGG, Veterans Health Administration National Oncology Clinical Advisor and Program Manager, Prevention Policy, Department of Veterans Affairs
LINDA HOUSE, President, Cancer Support Community
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
LISA KENNEDY SHELDON, Chief Clinical Officer, Oncology Nursing Society; Editor, Clinical Journal of Oncology Nursing
SAMIR N. KHLEIF, Professor of Medicine, Biochemistry, Molecular Biology, and Graduate Studies, Augusta University
RONALD M. KLINE, Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services
LEE M. KRUG, Disease Area Head, Lung and Head & Neck Cancer, Immuno-Oncology, Bristol-Myers Squibb
FRANCOIS LAFLEUR, U.S. Head and Vice President, Medical Affairs, Helsinn Therapeutics (U.S.), Inc.
MICHELLE M. LE BEAU, Arthur and Marian Edelstein Professor of Medicine and Director, The University of Chicago Comprehensive Cancer Center
MIA LEVY, Director of Cancer Health Informatics and Strategy, Ingram Associate Professor of Cancer Research, Associate Professor of Biomedical Informatics and Medicine, Vanderbilt-Ingram Cancer Center
GRETA MASSETTI, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer
RICHARD PAZDUR, Director, Oncology Center of Excellence; Acting Director, Office of Hematology and Oncology Products, Food and Drug Administration
MACE L. ROTHENBERG, Chief Development Officer, Oncology, Pfizer Global Product Development, Pfizer Inc.
RICHARD L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology
DEBORAH SCHRAG, Chief, Division of Population Sciences, Professor of Medicine, Department of Medical Oncology, Harvard Medical School, Dana-Farber Cancer Institute
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
DAN THEODORESCU, Paul A. Bunn, Jr. Endowed Chair in Cancer Research, Professor of Surgery and Pharmacology, and Director, University of Colorado Cancer Center
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, University of Iowa
ROBERT A. WINN, Associate Vice Chancellor for Community-Based Practice; Professor of Medicine, Division of Pulmonary and Critical Care Medicine, University of Illinois College of Medicine at Chicago; Director, University of Illinois Health Cancer Center
RICHARD C. WOODMAN, Senior Vice President and Head, North America Oncology Clinical Development & Medical Affairs, Novartis Pharmaceuticals Corporation
WENDY A. WOODWARD, Associate Professor and Service Chief, Breast Cancer Radiation Oncology, Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center
National Cancer Policy Forum Staff
SHARYL J. NASS, Forum Director and Director, Board on Health Care Services
ERIN BALOGH, Senior Program Officer
CYNDI TRANG, Research Assistant
SYLARA MARIE CRUZ, Senior Program Assistant (until June 2017)
NATALIE LUBIN, Senior Program Assistant (from June 2017)
PATRICK BURKE, Financial Officer
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:
ELLEN BAKER, The University of Texas MD Anderson Cancer Center
MURRAY F. BRENNAN, Memorial Sloan Kettering Cancer Center
JAMES F. CLEARY, University of Wisconsin Carbone Cancer Center
GWEN DARIEN, National Patient Advocate Foundation
MARY K. GOSPODAROWICZ, Princess Margaret Cancer Centre
EDWARD L. TRIMBLE, National Cancer Institute
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 RUTH MCCORKLE, Yale School of Nursing. 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.
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. Non-federal sponsors include the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society for Radiation Oncology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, AstraZeneca, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc.
The Forum wishes to express its gratitude to the expert speakers whose presentations helped examine policy issues pertaining to the cancer care continuum in low-resource areas, both domestically and internationally. 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
CANCER INCIDENCE AND MORTALITY TRENDS
CHALLENGES OF DELIVERING CANCER CARE IN LOW-RESOURCE AREAS
Health Care Infrastructure and Workforce Challenges
Patient Navigation and Psychosocial Support Services
Affordability of Cancer Care for Patients and Their Families
Poor Access to Healthy Nutrition and Exercise Facilities During Cancer Treatment and Survivorship
Challenges in Meeting the Needs of Patients from Diverse Cultures
POTENTIAL STRATEGIES FOR IMPROVING CANCER CARE IN LOW-RESOURCE AREAS
International Training and Mentoring
Preparing the Workforce to Deliver Culturally Appropriate Care in Low-Resource Areas
Examples of Partnerships to Improve Cancer Care in Low-Resource Areas
Pathology-Focused Partnerships
Partnerships to Increase Access to Palliative Care
Partnerships to Increase Access to Cancer Drugs
Increasing Access to Clinical Trials in Low-Resource Areas
Examples of Benefits and Lessons Learned from Partnerships
Community Readiness, Ownership, and Champions
Sustainable Support and Commitment
Building Capacity and Training
Mutually Beneficial Partnerships
Technology-Based Approaches to Cancer Care Delivery
Resource-Appropriate Technologies
Guidelines and Standards for Cancer Care
Resource-Stratified Guidelines for Cancer Care
Essential Medicines and Priority Medical Devices
Prioritizing Funding for Cancer Care in Low-Resource Areas
Potential Funding Opportunities for Cancer Care
Allocating Resources for Cancer Prevention, Screening, and Treatment
Potential Policy Strategies to Improve Prioritization of Cancer Care in Low-Resource Areas
National and International Cancer Care Policy and Advocacy
Boxes, Figures, and Tables
BOXES
1 Suggestions from Individual Participants to Improve Cancer Care in Low-Resource Areas
2 Availability and Safety of the Blood Supply for Cancer Patients
3 Ralph Lauren Center for Cancer Care
4 Project ECHO (Extension for Community Healthcare Outcomes)
6 Deep South Network for Cancer Control
8 Examples of Palliative Care Partnerships
9 Breast Cancer Genetics Research in Women with African Ancestry
10 Impact of the National Cancer Institute Community Oncology Research Program in the Gulf Region
11 New Mexico Cancer Care Alliance
12 Colorectal Cancer Screening and Treatment Program in Delaware
13 Opioids as Essential Medicines for Palliative Care
14 Pediatric Oncology Nursing Standards Developed by the International Society of Pediatric Oncology
15 Conveying the Urgency in Addressing the Global Cancer Burden
FIGURES
1 Predicted number of global cancer diagnoses in millions, 2012-2035
2 Age-adjusted breast cancer mortality among African American women in the United States, 2009-2013
4 Estimated need for cancer surgery in 2015 and 2030, by human development index category
5 Estimate of radiotherapy coverage worldwide
8 States’ grades for palliative care policies in 2013
TABLES
1 Examples of Partnering Organizations for Cancer Care in Low-Resource Areas
2 Availability of Essential Cancer Medicines Listed by the WHO, by Regions
Acronyms and Abbreviations
ASCO |
American Society of Clinical Oncology |
ASCP |
American Society for Clinical Pathology |
CDC |
Centers for Disease Control and Prevention |
CIRB |
central institutional review board |
CML |
chronic myeloid leukemia |
CMS |
Centers for Medicare & Medicaid Services |
DoD |
Department of Defense |
ER |
estrogen receptor |
GloBAM |
Global Breast Health Analytics Map |
HER2 |
human epidermal growth factor receptor 2 |
HIV/AIDS |
human immunodeficiency virus/acquired immunodeficiency syndrome |
HRSA |
Health Resources and Services Administration |
IRB |
institutional review board |
IT |
information technology |
IV |
intravenous |
LSU |
Louisiana State University |
NCCN |
National Comprehensive Cancer Network |
NCI |
National Cancer Institute |
NCORP |
NCI Community Oncology Research Program |
PEPFAR |
U.S. President’s Emergency Plan for AIDS Relief |
PIH |
Partners In Health |
Project ECHO |
Project Extension for Community Healthcare Outcomes |
Project ENABLE |
Project Educate, Nurture, Advise Before Life Ends |
TB |
tuberculosis |
UICC |
Union for International Cancer Control |
UN |
United Nations |
UNAIDS |
Joint United Nations Programme on HIV/AIDS |
UNODC |
United Nations Office on Drugs and Crime |
WHO |
World Health Organization |