ABC GLOBAL CHARTER 2018 - ABC GLOBAL ALLIANCE
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
ABC Global
Charter 2018
The ABC Global Alliance
is an ESO initiative2
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 2017m14
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, IL16
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 initiative19 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 2018You can also read
