The Global Cancer Agenda and the Role of Patient Advocacy Julie R. Gralow, M.D. Director, Breast Medical Oncology Jill Bennett Endowed Professor of Breast Cancer Professor, Global Health University of Washington School of Medicine Fred Hutchinson Cancer Research Center Seattle Cancer Care Alliance

A Global Call to Action UN High-level Meeting on Prevention & Control of Non-Communicable Diseases (NCDs) September 19-20, 2011 Millennium Development Goals expired 2015Millennium Development Goals expired 2015 NCDs – cancer, cardiac, respiratory, diabetes – a major challenge to health and development in 21st centuryNCDs – cancer, cardiac, respiratory, diabetes – a major challenge to health and development in 21st century NCDs a priority for UNNCDs a priority for UN

WHO Global Monitoring Framework for Non-Communicable Diseases (NCDs) Provides a clear vision for action by 2025Provides a clear vision for action by 2025 UN Member States formally adopted the global monitoring framework at the 66th World Health Assembly in May 2013UN Member States formally adopted the global monitoring framework at the 66th World Health Assembly in May 2013 –9 global targets –25 indicators Primary Target:

UN/WHO Global Monitoring Framework for NCDs: Targets for 2025

How Can Cancer Patient Advocates Help in Improving Cancer Care Globally?

2007 U.S. Institute of Medicine Report on Cancer Control Opportunities in Low- and Middle-Income Countries Sloan FA, et al, National Academies Press, 2007 Advocacy has a key role to play in bringing the public’s concerns about cancer to decision makers Income-Countries.aspx

2007 U.S. Institute of Medicine Report on Cancer Control Opportunities in Low- and Middle-Income Countries Sloan FA, et al, National Academies Press, 2007 Summary recommendations: AdvocacySummary recommendations: Advocacy –Need to actively support and assist cancer advocacy in low- and middle-resource countries –Suggested activities: »Set up advocacy networks within countries, regions, and internationally »Identify successful approaches to cancer advocacy and replicate/adapt for use in other settings »Provide hands-on training and technical assistance

Cancer Patient Advocacy Definition: The role of patients in the area of clinical care, health policy, and researchDefinition: The role of patients in the area of clinical care, health policy, and research Patient advocacy groups can be:Patient advocacy groups can be: –Informational (share disease- and treatment- specific knowledge) –Supportive (provide medical and/or psychological support to patients and family) –Research (participate in shaping the research agenda) –Political (influence government legislative and regulatory decisions)

Women’s Empowerment Cancer Advocacy Network (WE CAN) Developed to support breast and cervical cancer patient advocacy groups in low- and middle-income countries with skills to address:Developed to support breast and cervical cancer patient advocacy groups in low- and middle-income countries with skills to address: –inadequacy in information –inequity in treatment and care –injustice in cancer early detection, screening, treatment, and prevention

WE CAN Patient Advocacy Goals Raise awareness of the impact of women’s cancers on societyRaise awareness of the impact of women’s cancers on society Provide information on breast and cervical cancer issues to promote community activismProvide information on breast and cervical cancer issues to promote community activism Establish/promote health care standards on breast and cervical cancerEstablish/promote health care standards on breast and cervical cancer Understand what women with cancer want and need, and how to address those needsUnderstand what women with cancer want and need, and how to address those needs Bring together doctors, patients and activists as equals around a common causeBring together doctors, patients and activists as equals around a common cause Connect isolated women to national and international communities for collaborationConnect isolated women to national and international communities for collaboration Engage patient-doctor dialog and focus health care to the patientEngage patient-doctor dialog and focus health care to the patient

WE CAN Eastern Europe/Central Asia Breast and Cervical Cancer Advocacy Conferences Vilnius, Lithuania 2003 Kiev, Ukraine 2005 Minsk, Belarus 2007 Bishkek, Kyrgyzstan 2009 Vilnius, Lithuania 2011 Tbilisi, Georgia 2013 Bucharest, Romania 2015 ?? 2017

WE CAN East African Breast and Cervical Cancer Advocacy Conferences Kampala, Uganda September 2013 Dar es Salaam, Tanzania October 2014 Nairobi, Kenya April 2016 April