Deirdre O’Connell Vice President EUROPA DONNA - The European Breast Cancer Coalition Potential Solutions to Fight Cancer Breast Cancer Screening

EUROPA DONNA – The European Breast Cancer Coalition »Independent non-profit organisation »38 member fora throughout Europe »Works to raise awareness of breast cancer and to mobilise support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and care and increased funding for research »Represents interests of European women regarding breast cancer to local and national authorities as well as to institutions of the European Union

Member Countries Austria Belgium Bulgaria Croatia Cyprus Czech Republic Denmark Estonia Finland France Germany Greece Hungary Iceland Ireland Israel Italy Latvia Lithuania Luxembourg Malta Moldova Monaco The Netherlands Norway Poland Portugal Romania Russia Serbia and Montenegro Slovakia Slovenia Spain Sweden Switzerland Turkey Ukraine United Kingdom

Our Aim To Ensure that all European Women have Access to Accurate Information and Quality Screening, Diagnosis and Treatment

Breast Cancer in Europe Every 2 minutes a woman in the EU-25 is diagnosed with Breast Cancer (269,570 new cases per year) Every 6 minutes a woman in the EU-25 dies from Breast Cancer (87,700 deaths per year) Most frequent cause of death for women between 35 and 55

Towards Achieving Our Aims »European lobbying »National lobbying »Co-operation with professionals; research »Advocacy training/education »Information/Awareness raising »Conferences »EBCC »Pan European

Lobbying - Where and Whom Europe: »European Parliament »European Commission »MEPs and Commission staff National: »Parliaments and other elected bodies »Media »Public servants

Lobbying the European Parliament and Commission »Reception Strasbourg 2000 »Establishment of EPGBC 2001 »Exhibition Brussels 2002 »Public Hearing 2003 »Breast Cancer Resolution 2003 »EPGBC Website 2004 »Exhibition Brussels 2005

EUROPA DONNA Ten Goals »To promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe »To promote breast awareness »To emphasise the need for appropriate screening and early detection »To campaign for the provision of optimum treatment »To ensure provision of quality supportive care throughout and after treatment »To advocate appropriate training for health professionals »To acknowledge good practice and promote its development »To demand regular quality assessment of medical equipment »To ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion »To promote the advancement of breast cancer research

EP Resolution on Breast Cancer June 2003 »Goal: to ensure that every woman has access to optimum breast cancer screening and treatment, no matter where she lives. »Details targets and quality standards on everything from mortality rates to how mammograms are read »Calls on member states to monitor and report back by 2006 on their progress, giving European Commission task of ensuring that countries do their utmost to comply.

Breast Cancer Resolution 2003 Also calls for »National screening programmes, »Funding of research »National action plans against cancer »Evidence-based guidelines on breast-cancer screening, diagnosis, treatment and aftercare - development and constant updating »Transparent auditing process

EC Recommendation on Cancer Screening »2003 Adopted by Council of Ministers »Recommends that all Member States implement breast, cervical, colo-rectal screening. »Progress report 2006.

European Code Against Cancer »2003 European Code Against Cancer. 3rd revised edition. »Recommends breast, cervical, colo-rectal screening »Emphasises need for quality treatment to support screening

National Population Screening »Fully implemented national breast screening programmes in 8 EU countries: Belgium, Finland, France, Hungary, Luxembourg, the Netherlands, Sweden and the UK. »National programmes nearing completion in Portugal and Spain »Roll-out phase continues in Cyprus, Germany and Ireland » Regional or pilot programmes in Austria, Denmark and Italy and in some other states.

European Guidelines for Quality Assurance of Breast Cancer Screening and Diagnosis »4 th edition 2006 »Programmes must adhere to European guidelines »Population based »Regular audits by external experts »Can reduce mortality rate by up to 35% »Requirement for adequate treatment facilities

EPGBC Meeting January 2005

26 January EPGBC/EUROPA DONNA meeting »European guidelines for mammography screening »Speakers: Dr Lawrence von Karsa (EBCN Co- ordinator), Susan Knox (ED Executive Director), Dr Karl Freese (DG SANCO), Karin Jöns MEP »Importance of adhering to guidelines stressed »Access to up-to-date treatment programmes

28 June EPGBC/EUROPA DONNA meeting »Peter Ungar DG REGIO – Overview of Structural Funds »Possibility of applying SFs to health »Aim to provide economic and social cohesion »Connection between promotion of health and healthy productive workforce »About one third of EU budget dedicated to cohesion policy, notably for reducing disparities in development between regions

28 June EPGBC/EUROPA DONNA meeting Cohesion Policy »Health to be target sector »Strategic guidelines January 2006 »If adopted preparation of programmes to take place 2006 »Contact regional programme managers »Lobby MEPs »Lobby government »Lobby political parties

Breast Cancer in the EU-25 European Parliament October 2005 »Current information on Breast Cancer in Europe »Current state of diagnosis, treatment, etc. in member countries »European Guidelines for Quality Assurance of Breast Cancer Screening and Diagnosis. 4 th ed.

ED Advocacy Training »Advocacy Training Annual Update on best practice, guidelines, new treatments, epidemiology + communications training » Involvement in other advocacy training initiatives – for example »EPF workshops »ESMO/ECCO Patient Seminars

Informed Advocates »Informed advocates command credibility »Clarity on objectives of screening campaign »Knowledge of European guidelines »Knowledge of evidence for adherence to European guidelines

Europa Donna Ireland: example »National Screening Programme not yet rolled out to entire country »Around 55% of BreastCheck’s total target age group screened »Take-up rate of 77.1 per cent for Take-up rate for second attendance in excess of the target of 70 per cent at 89.8 per cent »Specialist Breast Units –leaflet, media, lobbying of politicians and government – now member of National Quality Assurance Group for Symptomatic Breast Disease Services

Europa Donna Ireland Screening Campaign »Participation in public meetings with parliamentary deputies, MEPs »Cooperation with other groups »Contact with Minister »Media opportunities - letters to newspapers, participation in TV programme, radio interviews, etc.

EUROPA DONNA Strength European advocacy organisation with European strategy and goals + Extensive network of survivors working at national level through ED fora Significant impact on European institutions and national health services

Useful Websites »EUROPA DONNA »EPGBCwww.epgbc.org Report of EPGBC meetings and links to relevant documentswww.epgbc.org »European Code Against Cancer. 3 rd edition. »European Mammography Guidelines. 3 rd edition (4 th edition due early 2006 and includes treatment guidelines) »Draft Cohesion Strategic Guidelines ffic/2007/osc/index_en.htm ffic/2007/osc/index_en.htm