ABC Global Alliance. F. Cardoso, MD

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2 ABC Global Alliance 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

3 DISCLOSURES Consultant/Ad Board: Amgen, Astellas/Medivation, AstraZeneca, Celgene, Daiichi-Sankyo, Eisai, GE Oncology, Genentech, GlaxoSmithKline, Macrogenics, Merck-Sharp, Merus BV, Mylan, Mundipharma, Novartis, Pfizer, Pierre-Fabre, Roche, Sanofi, Seattle Genetics, Teva

4 I the early 2000 s 2 SURVEYS ON LIVING WITH ABC STARTED TO CHANGE THE SCENE Most women do not feel that healthcare professionals, researchers, the media, women with EBC, and the governments pay enough attention to MBC. Throughout the survey there is a worrying picture of feelings of guilt, abandonment, isolation, and loneliness during the hard journey through MBC.. 44% of respondents reported being afraid to talk open about their disease and 52% said their friends and family were uneasy talking about the disease. Seminars in Oncology Nursing (26) 3, 2010; Community Oncology, Sep. 2010

5 TIME TO CHANGE! ESO-MBC International Task Force Manuscripts available in The Breast 16, 9 10, 2007 Lin N, Thomssen C, et al. The Breast 22 (2013) attendees from 88 countries

6 MAIN PRINCIPLES OF ABC RECOMMENDATIONS Apply the main principles of modern oncology: Multidisciplinary treatment Specialized breast cancer units Evidence-based medicine please STOP e i e e- ased edi i e!! Individualized (tailored) therapy Remember the specificities of ABC setting Patie t s prefere es & a tive parti ipatio Identify areas of UNMET NEEDS & RESEARCH PRIORITIES

7 In ABC Patient/Advocates are full and equal partners Evi Papadopoulos Europa Donna Musa Mayer AdvancedBC.org Dian "CJ" Corneliussen-James METAvivor Danielle Spence BCNA Gertrude Nakigudde Uganda Women s Cancer Support Organisation Anna Cabanes Susan G. Komen Shirley Mertz MBCN Renate Haidinger Brustkrebs Deutschland e.v. Maria Joao Cardoso Mama Help Danni Manzi Breast Cancer Care Bertha Aguilar Lopez ULACCAM

8 THE MAIN REASON AND GOAL OF ABC

9 ABC WORLD MAP Mexico Canada USA Costa Rica Colombia Brazil Portugal, Spain UK and Ireland Norway, Sweden, Denmark Greece, Malta, Tunisia, Croatia, Serbia, Romania, Cyprus, Turkey Egypt, Jordan, Israel, Lebanon, Algeria, Morocco Russia France, Italy, Germany, Belgium, Switzerland, Austria, Netherlands, Poland Saudi Arabia, Qatar, U. Arab Emirates, Iraq India China, Hong Kong Thailand, Vietnam, Singapore Japan, Korea, Taiwan Malaysia Philippines South Africa Australia and New Zealand Several online presentations: e-eso sessions, Peer Voice Program, Advocates O li e Sessio s, Breast Ca er TV,

10 5 year survival rates for mbc still around 25% 5-year Survival Rates by Stage at Diagnosis (Female Breast Cancer, US SEER), Compared with ,2 Have things really changed? 1. American Cancer Society. Breast Cancer Facts & Figures Atlanta, GA: American Cancer Society; National Cancer Institute. SEER stat fact sheets: breast cancer. Accessed July 31, Analysis suggests limited improvement in quality of life for patients with mbc over the last decade Yes... but not as much as needed! EQ-5D Score Quality of life in patients with mbc as assessed by EQ-5D, , Generic (non-cancer Specific) Health Utility Score An analysis of the trends in quality of life for mbc* indicates that there has not been significant improvement over the past decade 2 In fact, there has been a slight decrease in quality of life *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 1. Here & Now, Novartis, Global Status of Advances/Metastatic Breast Cancer, Decade Report, March 2016.

11 NEED FOR CHANGE IN REIMBOURSEMENT RULES Current rules do not facilitate oral, less toxic treatments, nor shorter treatments of radiotherapy

12 INEQUALITIES IN ACCESS TO CARE Between countries but also within each country Disparities in cancer outcomes (survival ) across Europe 90% of the population in LMICs lacks access to radiotherapy De Angelis, et al: Cancer survival in Europe by country and age: EUROCARE-5; Lancet Oncol, 2013 Figure 9. Coverage of radiotherapy services according to country as determined by global equipment databases, an activity-based operations model, cancer incidence, and evidence-based estimates of radiotherapy needestimates depend on the nature of equipment use...

13 ACCESS TO CARE

14 The ABC Global Alliance Continuing the work of the ABC Consensus Conference and Guidelines

15 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/Mission: To improve and extend the lives of women and men living with ABC in all countries worldwide and to fight for a cure To raise awareness of advanced breast cancer and lobby worldwide for the improvement of the lives of ABC patients Website ABCGlobalAlliance@eso.net Social

16 Members as of 13 March members from 69 countries ABC Global Alliance members Members represented through Europa Donna - The European Breast Cancer Coalition (full list of countries available at (47 countries) mba Alliance represents all its members in the ABC Global Alliance (full list of members available at (48 members)

17 ABC GLOBAL CHARTER 10 goals for the next 10 years 1. Double median overall survival for patients with ABC by 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 16

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