F. Cardoso, MD Director, Breast Unit, Champalimaud Clinical Center, Lisbon, Portugal

ESO Breast Cancer Program Coordinator ESMO Board of Directors & NR Committee Chair

EORTC Breast Group Past-Chair

WELCOME!

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TIME TO CHANGE!ESO-MBC International Task Force

The Breast 16, 9–10, 2007

Manuscripts available in www.abc-lisbon.org

Lin N, Thomssen C, et al. The Breast 22 (2013) 203-210

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Several online presentations: e-ESO sessions, Peer Voice Program, Advocates Online Sessions, Breast Cancer TV, …

ABC WORLD MAP

Portugal,

Spain

Canada

USA

Colombia

Brazil

Australia and

New Zealand

India

Japan,

Korea,

Taiwan

Malaysia

China,

Hong

Kong

Philippines

Egypt, Jordan,

Israel, Lebanon,

Algeria, Morocco

Norway,

Sweden,

Denmark

UK and

Ireland

Thailand,

Vietnam,

Singapore

Greece, Malta,

Tunisia, Croatia,

Serbia, Romania,

Cyprus, Turkey

France, Italy, Germany, Belgium,

Switzerland, Austria, Netherlands,

Poland

Russia

Saudi Arabia, Qatar,

U. Arab Emirates,

Iraq

South Africa

Costa Rica

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Fourth ESO-ESMO International Consensus Conference

ABC4 will be held under the High Patronage of His Excellency the President of the Portuguese Republic.

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• Long-term remissions: Challenges and controversies • Optimizing anti-HER-2 therapies for ABC • ABC Lecture - Silent voices speak: An advocate’s journey • The new management of luminal ABC • Clinical challenges • Inflammatory advanced breast cancer • Lost in translation! • Supportive and palliative care • A world of contrasts! • Management of triple negative ABC The program will include patient advocacy sessions developed in cooperation with the Patient Advocacy Committee: • Direct patient involvement in ABC research • Survivorship 101: Work, finances, home and emotional support • Registries, databases and statistical modelling: Making MBC count • Managing side effects, sexual issues and fertility

Programme Topics

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THE MAIN REASON AND GOAL OF ABC

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Simultaneous publication The Breast & Annals of Oncology

www.abc-lisbon.org ABC4

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The Guidelines Proccess

RESEARCH

CLINICAL PRACTICE

CLINICAL PRACTICE

RESEARCH

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ABC 4 Guidelines

• SCIENTIFIC ADVANCES

• What have we achieved in the last 2 years that is ready for implementation in clinical practice???

• OTHER (perhaps even more important) ADVANCES

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5 year survival rates for mBC still around 25%

5-year Survival Rates by Stage at Diagnosis (Female Breast Cancer, US SEER),

1992-1999 Compared with 2005-20111,2

1. American Cancer Society. Breast Cancer Facts & Figures 2003-2004. Atlanta, GA: American Cancer Society; 2003.

2. National Cancer Institute. SEER stat fact sheets: breast cancer. http://seer.cancer.gov/statfacts/html/breast.html. Accessed

July 31, 2015.

WHY?? CAN WE IMPROVE?

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http://seer.cancer.gov/statfacts/html/breast.html

ESMO slides, L. Mattos-Arruda

TUMOR HETEROGENEITY

BIOLOGICAL EVOLUTION

Treatment Treatment

Response Resistance Response

Progression

TUMOR RESISTANCE TO THERAPY

J. Ribeiro & F. CardosoABC4

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• STOP ACCEPTING PFS BENEFIT ALONE AS THE MAIN GOAL

• OS MUST BE AT LEAST A CO-PRIMARY

• COLLECT POST-PROGRESSION DATA

• THINK OF INNOVATIVE TRIAL DESIGNS

• USE OF REAL WORLD DATA

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Characterize and understand exceptional responders

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Analysis suggests limited improvement in quality of life

for patients with mBC over the last decade

• An analysis of the trends in quality of life for mBC* indicates

that there has not been

significant improvement over the past decade2

• In fact, there has been a slight decrease in quality of life2

1. Here & Now, Novartis, 2013. 2. Global Status of Advances/Metastatic Breast Cancer, 2005-2015 Decade Report, March 2016.

Quality of life in patients with mBC as assessed

by EQ-5D, 2004-2012, Generic (non-Cancer

Specific) Health Utility Score2

*Analysis was based on a review of 132 articles, of which a quantitative analysis was conducted of 14 studies reporting QoL measure

values for mBC. Values are weighted based on sample size. This analysis indicates a numerical decrease over time. It does not intend to demonstrate

statistical significance

0.8

0.7

0.6

0.5

2004 2006 2008 2011 2012

EQ

-5D

Sco

re

0.7201

0.7423

0.6990 0.6914

0.6313

CAN WE DO BETTER?

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• STOP PRESCRIBING SO MUCH UNECESSARY CT

• NOT ALL PATIENTS NEEDS COMBINATION OF ET + TARGETED

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• DEVELOP BETTER AND SPECIFIC QoL TOOLS

• ASK EXPERTS FOR HELP WHEN CHOOSING QoL TOOLS AND ENDPOINTS

TitleImproving Health-Related Quality of Life in Metastatic Breast Cancer.

Taking stock of achievements and delivering better measurement?

Principal Investigator(s) &

contact details

Galina Velikova – University of Leeds, UK and EORTC QLG

Fatima Cardoso – Champalimaud Clinical Center Lisbon, Portugal and chair

of Breast Cancer Group

Group Membership of Principal

Investigator(s)

☒EORTC Quality of Life Group

☒Other EORTC group: Breast Cancer Group

Ongoing project:

Development of a QoL tool specific for ABC ABC4

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Ongoing project:

Development of Quality Indicators for ABC/MBC

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Cancer World 2012, M. Beishon

• TREAT PATIENTS ACCORDING TO GUIDELINES

• IN A MULTIDISCIPLINARY, SPECIALIZED TEAM ABC4

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• TRAIN THE NEW GENERATION OF ONCOLOGISTS

• INCREASE ONCOLOGY WORKFORCE IN DEVELOPPING COUNTRIES ABC4

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ACCESS TO CARE

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INFORMATION

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OTHER COSTS AND IMPACTS OF CANCER

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Taxonomy of the burden of treatment

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CANCER IN THE WORKPLACE

OBJECTIVES

• Assesses the challenges that cancer poses for employers • Examines workplace policies and practices to address the

needs of those affected by the disease • Explores possible measures to strengthen workplace support AB

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Cancer is becoming an increasing economic and health burden for society

• Loss in productivity of cancer survivors who were unable to return to paid work in the UK at £5.3bn in 2010 (US$8.2bn in 2010 value). (5) That figure could rise sharply if, as expected, the number of people in the UK with cancer doubles to 4m by 2030. (6)

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• Many who have been diagnosed with cancer do re-enter the workforce.

• Most are driven to do so by financial need; many report other benefits: it gives them a sense of normality, provides a routine and helps them to feel productive.

• Many face a number of struggles - having to cope with fatigue and other consequences of the cancer and its treatment.

• And more than one-third (37%) workplace discrimination against sufferers, especially in Asia-Pacific (49%).

• Major challenges for employers, too: Risk of lost productivity, lower morale, extra costs of providing cover during sickness absence.

Re-entering the workforce

CHANGE WORK-RELATED LAWS

Ability to work part-time, flexible timetables, …

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FINANCIAL IMPACT OF CANCER

• For the individual patient and family

• For society ABC4

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We strongly recommend the use of objective scales, such as the ESMO Magnitude of Clinical Benefit Scale or the ASCO Value Framework, to evaluate the real magnitude of benefit provided by a new treatment and help prioritize funding, particularly in countries with limited resources. (LoE: Expert opinion) (88%)

ESMO Magnitude of Clinical Benefit Scale AB

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Meaningful benefit is lacking in the vast majority of EMA-approved cancer medications over the last 5 years: 89% (95% CI 80.0e95.7) and 79% (95% CI 68.6e87.1) of therapies do not meet the clinical benefit threshold in the adapted and original ESMO-MCBS, respectively. AB

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N. Grössmann et al. EJC 2017 82, 66-71DOI: (10.1016/j.ejca.2017.05.029)

… cancer drug approvals based on surrogate outcomes have become more commonplace, lowering clinical trial costs, participant numbers, and follow-up times, but often still require postmarketing assessments of OS and QoL. And, although these studies are often delayed or fail to fulfil their obligations, the approval status remains firm.

Thus, surrogate outcomes lead to faster medicine access, but poor correlations with clinical benefit.

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Regarding the evidence for new cancer drugs, the bar has been dropping, which has been justified by the high benefit of new drugs. We showed, however, that the price of drugs was not related to their benefit to society and patients.

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• OTHER (perhaps even more important) ADVANCES

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WORLD CANCER RESOLUTION 2017

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• We align policy and advocacy research to the key needs of mBC patients in 16

countries across five dimensions.

• We evaluated using standardized criteria measuring the adoption and implementation

of NCCP goals and BC-specific policies and advocacy programs.

Approach: mBC Policy: Patient Journey Framework

The uniqueness of each program and impact on community is

evaluated and measured through collected outputs and outcomes

using tailored tools

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Key mBC

Policy

Components

Patient Awareness

& Engagement

Informed Providers

Screening Programs

HCP Specialists

Diagnosis Programs

Patient Registries

Care Pathway &

Integrated Care

Centers of Excellence

Early Access Programs

Regulatory Approval Process

Access & Reimburse-

ment

Support Programs

Research

Stakeholder Engagement & Patient Advocacy

• Across each stage, examples of advocacy initiatives and models of

promising practices were extracted from Susan G. Komen’s global portfolio

Approach: Advocacy promising practices across the patient journey

Awareness/

Recognition Diagnosis

Coordinated

Care Treatment

Ongoing

Management

Global Analysis of MBC Policy Gaps and Advocacy Efforts Across the Patient Journey

ORAL PRESENTATION

ABC 4

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A Policy Roadmap on Addressing Metastatic Breast Cancer

Expert Working Group on Metastatic Breast Cancer

a multi-stakeholder collaboration

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Novartis Oncology Franchise or Department

European Parliament Event and Reception

An Initiative on Breast Cancer

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Novartis Oncology Franchise or Department

My Time Our Time Campaign

Current initiatives at a glance

Ease communication between ABC

patients and their family and friends

ABC language/ dialogue adboard and guide

New Language of ABC: AdBoard

Value what time means to ABC patients

and their loved ones

Picture My Time Our Time - Instagram

Gallery, e-book , installation

Engage MEPs with reality of ABC patient

experience and value they bring to

society

European Parliamentary Reception

.

Support the ABC Patient Journey

ABC Toolkit

A comprehensive resource Involve the caregiver

The Best of My Time Our Time Series

Videos/images from caregivers about caring

for their loved ones with ABC

Foster access and education on ABC

EU KOLs Ambassadors Meetings and

publication of reports

Fill the gaps and educate the current

Bloggers Community on ABC

Bloggers deep dive and toolkit

Raise awareness about ABC

Breast Cancer Awareness Month and

MBC Awareness Day

Dramatise ‘time’ through emotive

content; share day-to-day realities

Social Film

Sharable content via social media

Capture attention and spread awareness

Celebrity testimonial ABC social video

Social Media

Patients

Internal Engagement

Environment Shaping

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Seeding Progress and Resources for the Cancer

Community (SPARC)

Metastatic Breast Cancer Challenge

Empowering organisations worldwide

To address 4 particular priorities:

• Patient Navigation

• Voices for Change

• National Planning

• Earlier Presentation & Diagnosis

Run by Union for International Cancer Control, supported by Pfizer Oncology

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40 Organisations from 30 countries

2015

Countries

Australia

Brazil

Bulgaria

Colombia

Greece

Haiti

India

Israel

Malaysia

Mexico

Nigeria

Portugal

Rwanda

Spain

Thailand

Turkey

Uganda

Zambia

2017

Countries

Argentina

Australia

Cameroon

Canada

Cyprus

Ghana

Greece

Italy

India

Kenya

Kyrgyzstan

Mexico

Nigeria

Portugal

Philippines

Romania

Rwanda

Tajikistan

Trinidad &

Tobago ABC4

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US Collaborative Effort

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The ABC Global Alliance Continuing the work of the

ABC Consensus Conference and Guidelines

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ABC Global Alliance

Who We Are:

• A multi-stakeholder platform for all those interested in collaborating in

common projects relating to advanced breast cancer (ABC) around

the world

• Continuation of the work developed through the ABC International

Consensus Conference and Guidelines

• Launched during the World Cancer Congress in Paris on 3 November

2016

Our Vision:

• To improve and extend the lives of women and men living with ABC in

all countries worldwide and to fight for a cure

• Raise awareness of advanced breast cancer and lobby worldwide for

the improvement of the lives of ABC patients

NEXT F2F MEETING: linked to ABC4

Website www.abcglobalalliance.org

Social media @ABCGlobalAll

Email ABCGlobalAlliance@eso.net ABC4

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1. Double median overall survival for patients with ABC to at least 4 years by 2025

2. Improve Quality of Life for patients with ABC in clinical practice

3. Improve availability of robust epidemiology and outcomes data for ABC

4. Increase availability and access to multidisciplinary care, including palliative, supportive, and psychosocial assistance for patients, families, and caregivers to ensure patients are receiving the best treatment experience

5. Strive for all patients with ABC to have financial support for treatment, care and assistance if unable to work

6. Offer communication skills training to all healthcare providers

7. Provide accurate and up-to-date ABC-specific information tools to all patients who want them

8. Increase public understanding of ABC

9. Improve access to non-clinical supportive services for ABC

10. Protect workforce rights for patients with ABC

ABC GLOBAL CHARTER 10 goals for the next 10 years

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AKNOWLEDGEMENTS

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The ABC Award is aimed at recognising a researcher, physician, nurse or patient advocate who has made an outstanding and impacting contribution in the field of advanced breast cancer throughout his/her career.

The third ABC Award - in recognition for her work and dedication to advocacy specifically to advanced breast cancer patients will be assigned to Musa Mayer ABC4 Award Ceremony NEW TIME: FRIDAY 3rd November

ABC Award

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Cooperations

ABC guidelines are developed by ESO and ESMO and published simultaneously in The Breast and Annals of Oncology journals. ABC guidelines and/or conferences have been endorsed and supported by several interantional oncology organisations

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ESO wishes to express its appreciation for the following sponsors for having granted their participation:

Sponsors

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ABC Patient Advocacy Committee

Evi Papadopoulos Europa Donna

Maria Joao Cardoso Mama Help

Dian "CJ" Corneliussen-James METAvivor

Anna Cabanes Susan G. Komen

Renate Haidinger Brustkrebs Deutschland e.V.

Shirley Mertz MBCN

Danielle Spence BCNA

Musa Mayer AdvancedBC.org

Bertha Aguilar Lopez ULACCAM

Gertrude Nakigudde Uganda Women’s Cancer Support Organisation

Danni Manzi Breast Cancer Care

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Coordinating Chair Fatima Cardoso Breast Unit, Champalimaud Clinical Center, Lisbon, PT Co-Chairs Elzbieta Senkus Dept. of Oncology and Radiotherapy, Medical University of Gdansk, Gdansk, PL Evi Papadopoulos Europa Donna, Nicosia, CY

Chairs Eric P. Winer Breast Oncology Center, Dana-Farber Cancer Institute, Boston, US

Larry Norton Breast Cancer Programs, Memorial Sloan-Kettering Cancer Centre, New York, US

Alberto Costa European School of Oncology Milan, IT and Bellinzona, CH Scientific Committee Members Matti S. Aapro MO Clinique de Genolier, Institut Multidisciplinaire d’Oncologie Genolier, CH

Fabrice André Department of Medical Oncology, Gustae Roussy Institute, Villejuif, FR

Nadia Harbeck Breast Centre, University of Munich, Munich, DE

Scientific Committee

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Bertha Aguilar Lopez, MX - Carlos H. Barrios, BR - Jonas Bergh, SE - Elizabeth Bergsten Nordström, SE –

Laura Biganzoli, IT - Christine B. Boers-Doets, NL - Anna Cabanes, US - Maria João Cardoso, PT - Lisa A. Carey, US -

Dian “CJ” M. Corneliussen-James, US - Javier Cortés, ES - Giuseppe Curigliano, IT - Véronique Diéras, FR –

Matthew J. Ellis, US - Nagi S. El Saghir, LB - Alexandru Eniu, RO – Lesley Fallowfield, UK - Prudence A. Francis, AU -

Karen Gelmon, CA - Mary K. Gospodarowicz, CA - Renate Haidinger, DE - Stephen R.D. Johnston, UK –

Bella Kaufman, IL - Smruti Koppikar, IN - Ian E. Krop, US - Danni Manzi, UK - Norbert Marschner, DE -

Musa Mayer, US - Shirley A. Mertz, US - Gertrude Nakigudde, UG - Birgitte V. Offersen, DK - Shinji Ohno, JP –

Olivia Pagani, CH - Shani Paluch-Shimon, IL - Frédérique Penault-Llorca, FR – Aleix Prat, ES - Hope S. Rugo, US -

Timo Schinköthe, DE - George W. Sledge, US – Danielle Spence, AU - Christoph Thomssen, DE –

Nicholas C. Turner, UK - Daniel A. Vorobiof, ZA - Nikhil Wagle, US - Binghe Xu, CN

All Faculty and panel members

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ESO’S STAFF

PRESS OFFICE ABC4

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In memory and honour of….

Our never forgotten HEROES!

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Margarida Marques

Strong, wonderful lady.

Small percentage of patients with uncontrollable pain, despite access to all available resources.

One of hardest lessons for our breast cancer team. We, despite all our knowledeg and experience, let her down in the end ... AB

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Francesca Balena

Founder, ABC Group within Europa Donna Italy

Francesca Balena, a woman who first started the battle for MBC patients in Italy by activating a blog called “to fight, to live, to smile”. Nobody will, patient or non patient, really ever understand how much she spent of her life for us all. This is a priviledge of those who had the chance to love her.

Ciao Francesca, unforgettable example of courage and love. We will never forget you. ABC4

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DORIS FENECH

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“What most amazed me was her compassion towards her patients , the way she used to explain the situation they were going through and re-assure them, when all the time she was going through the same situation herself. Some of the patients found out that she was going through cancer when they met with her at the Oncology hospital having her treatment.”

DORIS FENECH

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“Her main ambition was to start an MBC support group within Europa Donna Malta which she eventually did together with 2 other ladies in 2013.”

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“The keynote speech that she presented at the ABC 2 conference in Lisbon 2013 was a truly remarkable session , she was speaking from her experience and offering hope and support to all MBC patients everywhere, at the end she had a standing ovation from all the delegates, my colleague and I were very proud of her achievement.

She was invited to the ABC 3 conference to chair a session even though she was already very sick, I am very pleased that I had the opportunity to accompany her as the committee would not let her travel on her own.” (Her strong note about choice of drugs while in the panel) AB

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“Her daughter Pearl’s wedding was the highlight of her life in 2016, she was very busy preparing for the occasion by sewing the brides ,maids dresses helped by her sister. She was so very happy on the day.” AB

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“Her last conference was EBBC 10 in Amsterdam where she also chaired a session. I remember the Speakers dinner which she attended and was so happy to meet all the friends she had made over the years, I remember the laughter and warm feelings towards her during the evening. After 2 days that we arrived back home her daughter phoned to tell me that they had taken her to hospital where she died on the 25th March , the only consolation her family and friends are left with is that she did what she loved to do best till the end. I am very proud that I have known her these past years. Doris, you are gone but will never be forgotten, all the patients that you looked after are grateful for your hard work to make life a little better for them with your ongoing advocacy for better services. “

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WELCOME! ABC4

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