ABC GLOBAL ALLIANCE Why and how? F. Cardoso, MD Director, Breast Unit, Champalimaud Clinical Center, Lisbon, Portugal ESMO Board of Directors & NR Committee Chair ESO Breast Cancer Program Coordinator EORTC Breast Group Chair
A DECADE AGO 2 SURVEYS ON LIVING WITH ABC STARTED TO CHANGE THE SCENE Wide-reaching assessment of the needs/preferences of 1342 women living with MBC in 13 countries (USA, UK, France, Spain, Poland, Belgium, Mexico, Argentina, Egypt, Australia, Brazil, Canada, Venezuela); asked about societal attitudes, stigma, psycho-social coping and clinical trials participation LBBC online survey of 618 patients, focused on assessment of needs for information, support and practical services Seminars in Oncology Nursing (26) 3, 2010 Community Oncology, Sep. 2010
Bridge Survey - Key Findings MBC Receives Too Little Attention Almost 6 in 10 women in Europe feel that MBC receives too little attention in general, and 54% say EBC receives more attention than MBC. Most women do not feel that healthcare professionals, researchers, the media, women with EBC, and the governments pay enough attention to MBC. Many women advocate for an increase in a wide variety of MBCrelated educational or support activities, especially support groups and written materials, but also conferences.
Bridge Survey - Key Findings GUILT! FEAR! LONELINESS! 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. 78% of women living with MBC had never participated in a clinical trial & 56% of these women were never invited to consider a clinical trial. Editorial: Cardoso, The Breast 18 (2009) 271 272
TIME TO CHANGE!
TIME TO CHANGE! ESO-MBC International Task Force Manuscripts available in www.abc-lisbon.org The Breast 16, 9 10, 2007 Lin N, Thomssen C, et al. The Breast 22 (2013) 203-210
MAIN PRINCIPLES OF ABC RECOMMENDATIONS Apply the main principles of modern oncology: Multidisciplinary treatment Specialized breast cancer units Evidence-based medicine (please STOP eminence-based medicine!!) Individualized (tailored) therapy Remember the specificities of ABC setting Patient s preferences & active participation Identify areas of UNMET NEEDS & RESEARCH PRIORITIES
3 5 NOVEMBER 2011
1.200 participants 84 countries 1070 participants 71 countries 800 participants 64 countries
INTERNATIONAL CONSENSUS GUIDELINES NOW EXIST IT IS OUR RESPONSIBILITY TO IMPLEMENT THEM! www.abc-lisbon.org
Simultaneous publication The Breast & Annals of Oncology www.abc-lisbon.org
The ABC Map Canada USA Colombia Brazil Portugal, Spain UK and Ireland Norway, Sweden Greece, Malta, Tunisia, Croatia, Serbia, Romania Egypt, Jordan, Israel, Lebanon Russia France, Italy, Germany, Belgium, Switzerland, Austria, Netherlands, Poland Saudi Arabia, Qatar, U. Arab Emirates India China, Hong Kong Thailland, Vietnam, Singapore Japan, Korea, Taiwan Malaysia Philippines South Africa Australia and New Zealand Several online presentations: e-eso sessions, Peer Voice Program, Advocates Online Sessions, Breast Cancer TV,
ABC Patient Advocacy Committee Evi Papadopoulos Europa Donna Maria Joao Cardoso Mama Help Dian "CJ" Corneliussen-James METAvivor Danielle Spence BCNA Kim Sabelko Susan G. Komen Shirley Mertz MBCN Marc Beishon Cancer World Musa Mayer AdvancedBC.org
TIME TO CHANGE! Have things really changed?
Access to the report is available online www.breastcancervision.com www.abc-lisbon.org
Campaign ambassadors Here & Now is a pan-european ABC awareness initiative from Novartis Oncology. The campaign aims to improve understanding of the high degree of unmet need, including the social and psychological impact of ABC, ultimately to improve support and care for patients across Europe.
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. 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 2005-2011 1,2 There will be an estimated 561,334 deaths worldwide in 2015 and an estimated 805,116 by 2030, representing a 43% increase in absolute number of deaths from BC 4
Changes in 5 year survival after diagnosis of de novo Stage IV BC US SEER Data Forbes 2015, by Dr Elaine Schattner http://www.forbes.com/sites/elaineschattner/2015/10/26/how-many-people-are-living-with-metastatic-breast-cancer/
Analysis suggests limited improvement in quality of life for patients with mbc over the last decade EQ-5D Score Quality of life in patients with mbc as assessed by EQ-5D, 2004-2012, Generic (non-cancer Specific) Health Utility Score 2 0.8 0.7 0.6 0.7201 0.7423 0.6990 0.6914 0.6313 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 2 0.5 2004 2006 2008 2011 2012 *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, 2013. 2. Global Status of Advances/Metastatic Breast Cancer, 2005-2015 Decade Report, March 2016.
GENERAL RECOMMENDATIONS The management of ABC is complex and, therefore, involvement of all appropriate specialties in a multidisciplinary team (including but not restricted to medical, radiation, surgical oncologists, imaging experts, pathologists, gynecologists, psycho-oncologists, social workers, nurses and palliative care specialists), is crucial (LoE: Expert opinion). (100%)
Here & Now research
GENERAL RECOMMENDATIONS Following a thorough assessment and confirmation of MBC, the potential treatment goals of care should be discussed. Patients should be told that MBC is incurable but treatable, and that some patients can live with MBC for extended periods of time (many years in some circumstances). This conversation should be conducted in accessible language, respecting patient privacy and cultural differences, and whenever possible, written information should be provided. (LoE: Expert opinion) (97%)
Patients with mbc need realistic, compassionate and individualized communication Of 582 surveyed oncologists and other healthcare practitioners in the U.S., Europe, Latin America and Australia Less than 50% of healthcare professionals report having received training on how to bring bad news to patients and families There is a need for patients to proactively seek involvement in decision making Healthcare professionals reported that only half their patients voice their treatment goals Earlier discussion on end-of-life is needed to prepare patients In 65% of cases, end-of-life discussions are held too late - first arising after multiple changes in treatment have already occurred Breast Cancer Center Survey. Sponsored by Pfizer Oncology. August 2015
Societal attitudes towards mbc have an impact on the patient experience 24 48 76% of the general public believe that advanced/metastatic breast cancer is curable Research results confirmed that attitudes about mbc, particularly in developing countries, are still extreme Diagnosis is seen as either a hopeless situation or something that can be beaten and cured As a result, patients with mbc either ignore the views of the wider community or limit contact with people outside of their support network The Challenges of Extreme Societal Opinions about mbc Death sentence Some believe people with mbc will die very soon Driven by perception that all cancer is terrible / imminently fatal Or by perception that once cancer spreads, end of life must be close mbc Attitudes Curable Others overly positive, thinking people can beat mbc Typically driven by visibility of success stories in ebc Patients themselves may believe their mbc can be cured in some cases, the medical team appears to have painted an overly positive picture 1. mbc Patient and Caregiver Qualitative Research, commissioned by Pfizer. January 2016.
Here & Now research
SURVIVORSHIP ISSUES ABC patients who desire to work or need to work for financial reasons should have the opportunity to do so, with needed and reasonable flexibility in their working schedules to accommodate continuous treatment and hospital visits. (LoE: Expert opinion) (100%)
Here & Now research
The indirect cost burden of mbc can be seen at patient/family level, healthcare system and societal level The costs associated with treating mbc effectively are greater than those incurred whilst managing early stages of breast cancer 2 Annualized Treatment Cost Trend for Managing BC in 2010 1 $100,000 80,000 <65 65 Disease Stage Disability-adjusted Life Year (DALY) Averted Africa/Asia North America 60,000 40,000 20,000 Stage I,II or III <$390 $6,550 Stage IV >$3,500 $70,400 0 Initial Phase Continuing Phase Final Phase Initial Phase = 12 months following diagnosis; continuing phase = the period between initial and final phase shown as cost per year; final phase = last 12 months of life The indirect costs of mbc can account for more than 50% of the total cost of care 3 1. Lidgren M, Wilking N, Jönsson B, Rehnberg C. Resource use and costs associated with different states of breast cancer. Int J Technol Assess Health Care. 2007;23(2):223-231. 2. Groot MT, Baltussen R, Uyl-de Groot C, Anderson BO, Hortobágyi GN. Costs and health effects of breast cancer interventions in epidemiologically different regions of Africa, North American, and Asia. Breast J. 2006;12(Suppl 1):s81 S90. 3. Spence D, Morstyn L, Wells K. The support and information needs of women with secondary breast cancer. Breast Cancer Network Australia (BCNA). 2015.
ER POSITIVE / HER-2 NEGATIVE MBC Endocrine therapy (ET) is the preferred option for hormone receptor positive disease, even in the presence of visceral disease, unless there is visceral crisis or concern/proof of endocrine resistance. (LoE: 1 A) (93%)
Starting with ET vs. Starting with CT PFS OS
CAN WE MANAGE PROPERLY WHAT WE CAN T MEASURE? What is the prevalence of ABC? (most cancer registries capture diagnosis and mortality but not relapse!) What is the best endpoint for advanced cancer?
Incidence HOW MANY ABC PATIENTS EXIST? GLOBOCAN 2012 data 5-Year PREVALENCE Mortality If 1 third would be MBC: about 2 million MBC patients BUT it is just a very rough estimation
Have things really changed? The advocacy world
On January 25, 2008, the Metastatic Breast Cancer (MBC) Advocacy Working Group comprised of 16 patient advocates groups from 7 countries, convened in New York, to share insights on the current obstacles and discuss potential solutions for better addressing unmet needs of women with MBC.
Most major Advocacy Groups have now specific resources for ABC pts BUT Limited, wide variation around the world, still many struggling to implement Groundbreaking work done by ABC DEDICATED ADVOCACY GROUPS
US Collaborative Effort
Have things really changed? YES, BUT There is still SO MUCH TO BE DONE!
VISION To improve the lives of women and men living with advanced breast cancer and fight for a cure for this disease.
MISSION The Advanced Breast Cancer (ABC) Global Alliance provides all involved partners (patient support groups, health professionals, advocates, pharmaceutical and diagnostic companies, research groups, societies, organizations and individuals) a platform to work together in common projects designed to improve the lives of advanced breast cancer patients worldwide. It will also raise awareness and lobby worldwide for the improvement of the lives of ABC patients.
All ABC Global Alliance partners commit to: 1. Develop, implement and promote research projects dedicated to advanced breast cancer. 2. Develop, implement and promote education and awareness projects, with a global, national or regional reach, aiming at improving the survival and quality of life for ABC patients. 3. Fight and work for equal access to the best cancer care for ABC patients, which must involve care by multidisciplinary and specialized teams. 4. Work for the worldwide implementation of high quality guidelines for the management of advanced breast cancer so that every ABC patient is treated according to these guidelines. 5. Fight and work for implementation of polices that facilitate better and equal access to care for all ABC patients, including access to the WHO essential medicines, access to high quality and specialized radiation therapy and access to high quality palliative and supportive care, in particular pain control.
All ABC Global Alliance partners commit to: 6. Fight for the implementation of polices that facilitate the right to work for ABC patients. 7. Raise public awareness about ABC and the specific needs of ABC patients. 8. Fight for access to needed services for caregivers, including socio-economic support. 9. Enhance education of ABC patients and health care professionals. 10.Fight and lobby for changes in work-related laws, clinical trials laws, and other laws that directly affect ABC patients around the world.
A global Call-to-Action is being developed, with tangible objectives for the next decade, in the various areas that impact on the lives of ABC patients. To achieve these objectives several projects must be developed and implemented around the world. The ABC Global Alliance is the platform. The partners will run the projects (no duplication!). Experienced partners mentoring/helping less experienced Joint projects Joint lobbying
PLEASE JOIN US Patient organizations, Cancer Organizations, Pharma and Diagnostic Companies, Institutions, Foundations, Individuals, SPARC grantees ABCglobalalliance@eso.net F Cardoso. The Breast 18 (2009) 271 272
BIG THANK YOU: ESO S STAFF