1 "Cancer and the European Citizen – it’s time to deliver! Francesco De Lorenzo ECPC President ECPC Members in Action Conference 2009 ALL CANCER PATIENTS European Parliament, Strasbourg, 4th February 2014

2 ECPC: "Nothing about us, without us" Representing 341 cancer patient groups in 45 countries All cancers – common and rare Run and governed by patients Promoting timely access to appropriate prevention, screening, early diagnosis, treatment and care for all cancer patients Reducing disparity and inequity across the EU Encouraging the advance of cancer research & innovation Increasing cancer patients' influence over European health and research policy High visibility with EU Commission, EU Parliament (MEP MAC), EMA

3 ECPC Advocacy : bridging diversity to support cancer survivors European level National level Coordination & Advocacy

4 Activities: European Cancer Patient Coalition

5 Planned activities Working Groups: Rare Cancers, Paediatric Oncology, Melanoma – personalised medicine, Biobanking, Access to employment and social benefits, Access to medicines and radiotherapy, Head and Neck Cancers. European Projects:

6 European Medicines Agency Kathi Apostolidis and Rafal Swierzewski are the ECPC representatives in EMA’s Patients’ and Consumers’ Working Party of the Committee for Medicinal Products for Human Use (CHMP). They make sure that cancer patients are strongly involved in all possible procedures within EMA (e.g. benefit/risk assessment in Scientific Advise procedures; Package Leaflets assessment; participation in Scientific Advisory Group in case of oncology).

7 Events in the European Parliament Launch of a White Paper on Head and Neck Cancers – September 2013 Conference on Immuno-Oncology – December 2013

8 General Assembly in 2014 To take place in Bucharest, Romania, between June. A session on Patient involvement in medicine evaluation at the European Medicines Agency. Trailer of an HBO movie, ‘The Network’, on lack of medicines in some countries.

9 Awareness events Running the Marathon in Brussels in 2013 to raise awareness on IBC Cancer. In 2014, ECPC wants to organise its own marathon for raising money for scholarships for young doctors.

10 European Cancer Patient Coalition General Data Protection Regulation If adopted in its current form, the General Data Protection Regulation will stop all public health research as we know it in the European Union. ECPC shared the common position of ESMO and pleaded for: -the concept of “broad consent” for retrospective and epidemiological research which would allow patients to give consent to a range of research uses of their data to address questions that may arise in the future and which could not have been framed at the time of data collection. Broad consent would still operate under strict safeguards and approval by ethics committees. -derogation from informed consent for population-based disease registries such as those for cancer and the communicable diseases.

11 European Cancer Patient Coalition Actions undergone by ECPC -Discussions with Italian Justice Vice Minister, Cosimo Ferri. - Contacted members of the European Parliament and briefed them on the topic. Subsequently, the MEPs informed their national representations in Brussels about the need of rephrasing Articles 81 and 83 in the Council negociations. - Jana Pelouchova, ECPC Secretary presented the position of ECPC on Data Protection Regulation at the Conference organised by Alojz Peterle, 5 December.

12 INCIDENCE 5 yr. PREVALENCE MORTALITY Estimated number of cases, all cancer combined, both sexes, Europe 2,445,000 6,617,411 1,234,000 GLOBOCAN 2008

13 Economic burden of cancer across the EU Across the EU, the health-care costs of cancer were equivalent to 102 euro per citizen but varied substantially from 16 euro per person in Bulgaria to 184 euro in Luxembourg. Life expectancy mainly in Eastern European countries is approximately 70 years of age, in other EU countries it is reaching or surpassing 80 years. The survival rate (for all cancers combined) 5 years after a cancer diagnosis is now approximately 50%. According to latest results from EUROCARE -5 the countries with lowest survival for most cancers are Bulgaria, Estonia, Latvia, Lithuania, Poland and Slovakia. Paediatric oncology : Survival in Eastern Europe is generally 10 to 20% lower than in Western Europe.

14 Making the Parliament work for the European Cancer Patient Call to Action in concert with the Launch of the European Cancer Patient’s Bill of Rights Prioritising Cancer in the European Parliament and the European Commission A MANDATE FOR IMPROVED CANCER CARE FOR EUROPE’S CITIZENS

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