ABC GLOBAL CHARTER 2018 - ABC GLOBAL ALLIANCE

 
ABC GLOBAL CHARTER 2018 - ABC GLOBAL ALLIANCE
ABC Global
Charter 2018

               The ABC Global Alliance
                    is an ESO initiative
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                                                                    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).
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                 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”.
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                                                                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.
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                                                                                                                                                             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.
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	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.
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                                                                                                                         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
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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

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