ABC GLOBAL CHARTER 2018 - ABC GLOBAL ALLIANCE
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2 The ABC Global Alliance is a platform for all those interested in collaborating in common INTRODUCTION projects relating to ABC. Our goal is to improve and extend the lives of women and men living with ABC in all countries worldwide and to fight for a cure. We will also raise awareness The ABC Global Charter has been developed to address the of the disease in the broader cancer community and beyond, with particular emphasis on the most urgent and actionable gaps in treatment and care of global health and development stakeholders to lobby worldwide for the improvement of the patients with advanced breast cancer (ABC) to ultimately lives of patients with ABC. improve and extend their lives. The ABC Global Alliance, an Despite significant progress in the management of early breast cancer (EBC), major gaps still ESO (European School of Oncology)-backed multi- exist in the treatment and management of ABC and median survival has remained stubbornly stakeholder platform initiated in November 2016, will drive stuck at 2 to 3 years after diagnosis of metastases. Although breast cancer is thought to be a forward the ABC Global Charter and encourage the disease of the developed world, almost 50% of breast cancer cases and 58% of deaths occur worldwide breast cancer community, policy makers and the in less developed countries. Breast cancer is the top cancer in women worldwide and is public to work together to help change the future of patients increasing particularly in developing countries where the majority of cases are diagnosed in with ABC around the world. late stages, underscoring the urgent need to address gaps in current care. Metastatic disease may occur at diagnosis (called “de novo”) or as a relapse sometime after a diagnosis of early breast cancer; in the developed countries de novo ABC represents only about 10%, while in developing countries it reaches 60 or 80% of new breast cancer cases. Even with the best almost 50% of breast available therapies, about one third of breast cancer cases diagnosed early will eventually cancer cases and 58% relapse and become ABC. Although breast cancer is more common in women, men are also affected. In men, the disease is much rarer, but tends to be more advanced when detected, of deaths occur in less compared to women. developed countries The ABC Global Charter addresses gaps in care, access to resources and support, and treatment outcomes for patients with ABC, as identified in the Global Status of Advanced/ Metastatic Breast Cancer 2005-2015 Decade Report. Research from the Count Us, Know Us, In men, the disease is Join Us has found that patients with ABC feel isolated from the established ‘pink’ breast much rarer, but tends cancer movement which tends to focus on prevention and survivorship. In contrast, the ABC to be more advanced Charter aims to drive change in the care of patients with ABC, tailoring actions to make them when detected relevant and feasible for different geographies and capacities. The Actions for Change aim to compared to women achieve near and longer-term goals, to give patients a voice, bring patient needs to the fore for driving decision-making and ultimately improve and extend their lives. Advanced Breast Cancer (ABC) comprises inoperable Locally Advanced Breast Cancer (LABC) and Metastatic Breast Cancer (mBC). mBC is also known as stage IV or secondary breast cancer. For the purposes of this document, we use the term advanced breast cancer (ABC).
5 Our goal is to unite the ABC 10 for 10: Ten community by catalysing goals over the change to improve ABC next decade to patient outcomes. drive global Healthcare professionals (HCPs), governments, health policy makers, improvements patient advocates, members of the in ABC carE breast cancer community, and anyone whose life is touched by ABC should unite to take action at local and international levels to help achieve the objectives described below by 2025 and in doing so ensure that advanced breast cancer patients feel included in the Sustainable Development Goals vision of “leaving no one behind”.
6 Patient Outcomes and Disease Burden: EBC, too few organizations are able to Patient outcomes in ABC have improved secure adequate resources to support minimally over the past decade, with ABC-specific initiatives and policies. BACKGROUND substantial variation according to subtype of breast cancer, and there is currently no cure. Workplace Initiatives: Despite willingness and financial pressures to Despite some advances, there is limited return to work, patients with ABC often do understanding of how to achieve disease not receive recognition or the opportunity for remissions and also to improve tolerability of adequate adjustments within the workplace. therapy and quality of life (QoL) for patients Many employers have limited understanding Key Gaps and Actions for living with ABC. Currently, disease burden and unmet needs are difficult to measure due of the specific needs and impact of ABC, Change Imperatives for to widespread lack of accurate, population- which result in insufficient support for their ABC employees during diagnosis and Improving ABC Patient based data for patients with ABC. treatment. Most patients with ABC are forced to leave or adapt their professional activity. Care by 2025 Public Perception and Stigma: Stigma and isolation are commonly Policy: experienced by those with ABC, highlighting ABC has been and will continue to be Gaps in ABC research, ABC patient care and ABC in society a need for increased support and awareness associated with a significant economic have been identified. The 10 Actions for Change in the broader community. The general burden to society and healthcare systems. are designed to help address public, though differing by country and Despite this, there remains limited ABC- these gaps and drive region, has misperceptions around ABC, focused policies to drive improved levels of improvements in care. driven by a lack of education about the cost-effective and quality care. disease, the notion of survivorship in breast cancer, and scientific progress in EBC to date. Patient Care Continuum: Comprehensive care gaps exist in breast Social and Caregiver Relationships: cancer centers along the care continuum, Societal understanding of ABC is limited, from diagnosis through to end of life. which can apply additional pressure to the Improvements in supportive care services, immediate family and caregivers of patients, such as psychosocial care and access to who have deeper understandings of the multidisciplinary teams, are needed. patient experience. This increased burden, Healthcare Provider Communication specifically on caregivers, results in and Support: There is a lack of ABC- emotional, financial, professional and specific training and educational materials to practical unmet needs. support HCPs engaging in a two-way dialog Advocacy Initiatives: with patients. This limits conversations Many patient support organizations include around diagnosis, treatment decisions, patients with ABC in their care and outreach. disease progression and end of life, leaving Despite recognition of the greater needs of people with ABC unprepared for what lies patients with ABC compared to those with ahead.
9 Ensure that all patients with ABC receive the best possible treatment and care by increasing availability Improve the quality of life (QoL) of and access to care from a 10 ACTIONS FOR CHANGE of patients with ABC multidisciplinary team Improve the wellbeing of patients living Patients with ABC require access to multidisciplinary clinical care and with ABC by raising awareness about the specialists to improve treatment, outcome need to collect and act upon quality of life and overall QoL. data. Support should differ from that for early Limited utilization of QoL tools in clinical breast cancer (EBC) patients, particularly practice can be partially attributed to a regarding types of available information. Help patients with ABC live Enhance our understanding longer by doubling ABC median about ABC by increasing the non-standardized definition of QoL and Increase availability and access to inadequate measurement tools for multidisciplinary care, including palliative, overall survival by 2025 collection of high quality data advanced and metastatic patients. supportive, and psychosocial assistance There has been limited improvement in Generally, cancer registries around the for patients, families, and caregivers to Increased focus on development and patient outcomes in ABC over the past world only collect information about initial ensure patients are receiving the best implementation of ABC-specific QoL decade, and the burden of disease is cancer diagnoses and mortality; most do treatment experience. measurement tools in clinical practice and expected to continue to rise. not document cancer recurrences that The development of access to remote policy making is essential to improve QoL represent the majority of ABC cases and multidisciplinary tumour boards is All patients with ABC must be treated by a and care of patients with ABC. essential for patients living in a long therefore it is currently unknown how multidisciplinary, specialized team, and Systematically include QoL, PROMs distant from all major care centres. many patients with ABC exist. according to high quality international/ (patient-reported-outcomes) and PREMs Ensure that each patient with ABC has national guidelines. Readily accessible, good-quality data at (Reported Experience Measures) in clinical access to a “key contact” who is also a the time of ABC progression, recurrence, research to understand patient member of the multidisciplinary team and Policy environment should allow access who coordinates their care throughout the and survival (i.e. of robust epidemiology perspective of living with ABC and the for all patients with ABC to the best care continuum, including when elements and outcomes data for ABC) are urgently burden of treatment. available therapies and to supportive/ of that care take place outside the needed and can be useful for shaping palliative measures. QoL should encompass physical, social, specialist breast unit/centre. policy decisions. and emotional well-being including A range of materials should be available Dedicated and coordinated research is Provide guidance and input to help relationships, supporting the need for a and tailored to meet patients’ specific needed specifically focused on ABC. establish uniformity of the ABC data holistic and multidisciplinary approach to needs and to empower patients when The patient voice needs to be included collection. making treatment decisions; support care. (via experienced patient advocates) in the should be offered to patients when Increase knowledge about ABC by Patients input regarding what type of QoL reviewing the content. design of clinical trials and development developing and implementing robust Big issues to measure, respecting Gaps in support for sexual health and of clinical registries/criteria. Data (Analytic) systems/processes, around geographical and cultural differences, relationships should be acknowledged the world. should be sought. and addressed. Include the patient voice (via experienced Address the needs of families and Empower patients to raise QoL caregivers in a culturally sensitive way, patient advocates) in the design of clinical expectations and discuss this with their including the needs of children, adults trials and development of clinical healthcare professionals as well as their including spouses, siblings, parents and registries/criteria. treatment non-related caregivers.
10 Improve communication Meet the informational needs of Ensure that patients with ABC Counteract the stigma and between healthcare patients with ABC by using easy are made aware of and are isolation associated with living professionals (HCP) and patients to understand, accurate and referred to non-clinical with ABC by increasing public with ABC through the provision up-to-date information support services understanding of the condition of communication skills materials and resources training for HCPs Increase access to existing materials for Outside of clinical care, patients are often The stigma and isolation felt by patients Advanced Communication skills should those seeking them rather than creation of unaware of available services, such as with ABC can be attributed to limited be included as an essential component of new ones; increase networking and local volunteer/advocacy organizations, to understanding of the disease by the healthcare provider education programs sharing of best practice examples assist with daily activities and living. general public. for all HCPs caring for patients with ABC between organisations. Awareness of these services should be There is a need to educate the general including at medical school core Materials should be focused on messages raised, and patients referred to them as public on what the terms “advanced curriculum level. The new ESMO-ASCO most relevant to patients with ABC, such appropriate. breast cancer” and “metastatic” mean. Global Oncology Curriculum should be as patients’ fears of pain and uncertainties Policies are needed to help minimize Education is needed to highlight that implemented in all countries. about their disease and its outcome. access barriers to supportive services and patients can live with the disease while Within communication training programs, Materials should assist patients in the assist in efficiently connecting patients to also transparently conveying the truth, there should be an emphasis on ensuring decision-making process, including the services they need. particularly around the median overall that HCPs understand what matters to addressing individual patient needs. survival. Increased access to and provision of patients and carers in order to support It is critical that resources in low- and non-medical patient navigators and care and guide them through treatment middle-income countries are explicit in coordinators is needed to help patients decisions. what treatments are available to patients understand services available and what Learnings can be drawn by HCPs from specifically in their own. However, they are entitled to receive, as well as to other advanced and some chronic information should also be provided on facilitate access to and increase uptake of diseases to drive change in patient treatments available in other countries, to those services required. perception of ABC – from that of a death allow patients to access these if they are sentence to a condition with which able. patients can live for a prolonged period of time. There is a need to validate the effectiveness of education and communication tools in different languages.
13 DEVELOPMENT OF THE ABC GLOBAL CHARTER Ensure that patients with ABC Help patients with ABC An earlier collaboration between ESO and Pfizer led to the have access to treatment continue to work by development of the preliminary mBCVision2025 ‘Call-to- regardless of their ability to implementing legislation that Action’. This important work has been taken forward by the pay protects their right to work multi-stakeholder ABC Global Alliance to become the ABC and ensures flexible and Strive for all patients with ABC to have Global Charter. The content for the Call-to-Action was accommodating workplace financial support for treatment, care and determined by consensus from mBC Vision 2025 Taskforce environments assistance if unable to work. members. Following an open consultation process to gain Many patients with ABC want or need to feedback and input into the Global Charter from the ABC Provide a mechanism to avoid financial community, the ABC Global Alliance Interim Steering continue working through their catastrophe in the event that patients Committee revised and finalised the ABC Global Charter. diagnosis and treatment; however, there lose employment. The Charter has been revised in 2018 for better wording and are very few policies and guidelines that Work to ensure that patients with ABC focus on employment during cancer clarification and approved by the ABC Global Alliance have or maintain health coverage, even treatment for metastatic disease. Executive Committee. if unemployed. Most patients with ABC are not Support access to treatment regardless protected in the workplace and are of the ability to pay, through policy and often denied employment flexibility to accountability mechanisms. deal with effects of the disease and its The ABC Global Charter has been developed to unite the ABC community to drive action and help us to work together towards common, achievable goals. treatment. In addition, patients with ABC Work to ensure patients have access to Work is now underway to implement the Actions for Change, ultimately to may face discrimination based on improve and extend the lives of patients with ABC. additional financial support where disease misperceptions. needed e.g. for childcare, transport to access their treatment. Protection against discrimination should References come from individual employers and 1. Cardoso F, Costa A, Norton L, et al. ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC 2 Support patients with financial advisory Published simultaneously in: Breast. 2014;23(5):489-502; Ann Oncol. 2014;25(10):1871-1888. the employment system and patients services, empowering them to better 2. World Health Organization. Projections of mortality and causes of death, 2015 and 2030. http://www.who.int/healthinfo/ should be empowered through global_burden_disease/projections/en/. Updated July 2013. Accessed August 2017. manage their finances throughout 3. Global Status of Advanced/Metastatic Breast Cancer: 2005-2015 Decade Report. http://breastcancervision.com. Published provision of information and knowledge March 2016. Accessed August 2017. treatment. to request support and protection. 4. Cardoso F., Spence D., Mertz S., Corneliussen-James D., Sabelko K., Gralow J., Cardoso MJ., Peccatori F., Paonessa D., Benares A., Sakurai N., Beishon M., Barker SJ., and Mayer M.. Global Analysis of Advanced/Metastatic Breast Cancer: Decade Report (2005–2015). The Breast 39: 131-138, 2018. 5. Metastatic Breast Cancer Network. 13 facts about metastatic breast cancer. http://mbcn.org/images/uploads/13_Facts_about_ Metastatic_Breast_Cancer2014.pdf. Accessed August 2017m
14 Contributors to the ABC Global Charter ABC Global Alliance Executive ABC Global Alliance Interim Committee Steering Committee (December 2017-December 2019) (November 2016-November 2017) F. Cardoso, F. Cardoso, Champalimaud Clinical Center, Lisbon, PT (Chair) Champalimaud Clinical Center, Lisbon, PT (Chair) M. Aapro, B. Aguilar Lopez, Genolier Cancer Centre, Genolier, CH Breast Cancer Advocate, Mexico City, MX M. Hurlbert, G. Cook, BCRF and MBC Alliance, New York, US Novartis Parmaceuticals Corp., East Hannover, US R. Kaur, R. Haidinger, Breast Cancer Welfare Association Malaysia (BCWA), Petaling Jaya, MY Brustkrebs Deutschland, Hohenbrunn, DE M. Pandeloglou, M. Hurlbert, Breast Cancer Network Australia (ABC patient representative), AU BCRF and MBC Alliance, New York, US D. Spence, S. Knox, Breast Cancer Network Australia, Camberwell, AU Europa Donna – The European Breast Cancer Coalition, Milan, IT M. Thrift-Perry, M. Thrift-Perry, Pfizer Inc., New York, US Pfizer Inc., New York, US J. Torode, J. Torode, Union for International Cancer Control, Geneva, CH Union for International Cancer Control, Geneva, CH T. Wiseman, M. Ziv, European Oncology Nursing Society, London, UK Israel Cancer Association, Givatayim, IL
16 mBC Vision 2025 Sponsors Taskforce members The ABC Global Alliance is sponsored through unrestricted grants provided by: F. Cardoso, Champalimaud Clinical G. Lopes, Center, Lisbon, PT (Chair) Oncoclinicas do Brasil Group & Sylvester Comprehensive Cancer M. Aapro, Genolier Cancer Centre, Genolier, Center at the University of Miami, Main Sponsors BR CH M. Mayer, B. Aguilar Lopez, AdvancedBC.org, New York, US Breast Cancer Advocate, Mexico City, MX G. Nakigudde Uganda Women’s Cancer Support B. Anderson, Organization, Kampala, UG Fred Hutchinson Cancer Research Center, University of Washington C. Nolan, School of Medicine, Washington, Breast Cancer Network Australia, US Camberwell, AU A. Cabanes, Susan G. Komen, New O. Olopade, York, US University of Chicago, US I. Chitapanarux, Chiang Mai H. Rugo, University, TH UCSF Helen Diller Family Comprehensive Cancer Care, US K. Crawford-Gray, Worldwide Breast Cancer, Lewisville, US K. Sabelko, Susan G. Komen, US V. Diéras, Institut Curie, Paris, FR D. Schmitt, A. Dvaladze, Stiftung Path Breast Cancer University of Washington, US Biobank, Konstanz, DE N. El-Saghir, E. Schumacher-Wulf, Naef K. Basile Cancer Institute at Mamma Mia! Breast Cancer the American University of Beirut Magazine, Kronberg, DE Medical Center, Beirut, LB D. Spence, S. Gupta, Breast Cancer Network Australia, Tata Memorial Centre, Mumbai, IN Camberwell, AU K. Holm, C. Taylor, Global Focus on Cancer, Patient Advocates for Cancer Port Chester, US Research & Treatment, Geneva, CH M. Hurlbert, BCRF and MBC Alliance, New York, US *Global Status of Advanced/Metastatic Breast Cancer 2005-2015 Decade Report Steering Committee member The ABC Global Alliance is an ESO initiative
19 ABC Global Alliance members Members represented through Europa Donna - The European Breast Cancer Coalition (full list of countries available at www.europadonna.org) mBC Alliance represents all its members in the ABC Global Alliance (full list of members available at www.mbcalliance.org) as of 1st June 2018
www.abcglobalalliance.org ESO ESO Milan Via Turati, 29 20121 Milan – Italy Phone: +39 02 8546451 Fax: +39 02 85464545 ESO Bellinzona Piazza Indipendenza, 2 6500 Bellinzona – Switzerland Phone: +41 91 8200950 Fax: +41 91 8200953 FURTHER INFORMATION Roberta Ventura ABC Globa Alliance Managing Coordinator Email: ABCGlobalAlliance@eso.net Phone: +41 91 8200 956 FOLLOW US ON All rights reserved. Printed in Italy, June 2018
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