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HOW UNIFORM IS CANCER CARE IN EUROPE Francesco De Lorenzo ECPC President

HOW UNIFORM IS CANCER CARE IN EUROPE Francesco De Lorenzo ECPC President. European Parliament, 18 th of February 2014. ALL CANCER PATIENTS. ECPC Members in Action Conference 2009. ECPC: "Nothing about us, without us". Representing 341 cancer patient groups in 45 countries

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HOW UNIFORM IS CANCER CARE IN EUROPE Francesco De Lorenzo ECPC President

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  1. HOW UNIFORM IS CANCER CARE IN EUROPE Francesco De Lorenzo ECPC President European Parliament, 18th of February 2014 ALL CANCER PATIENTS ECPC Members in Action Conference 2009

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

  4. European Cancer Patient Coalition Activities:

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

  7. Cancer rehabilitation to reduce disabilities Italy counts 2 million cancer survivors, withanestimatedannualnew case rate for 2009-2020 of +12%. Accordingtorecent data recordedby Italy’s National Social Security Institute (INPS), cancer is a leading cause of disability. Cancer prevalence out of the total disability claims in the 1998- 2009 time period. Source: INPS National Social Security Institute

  8. 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, 20 in Romania, 37 in Poland, 39 in Hungary to 114 in Italy, 144 in Austria, 192 in Germany and 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.

  9. Conclusions of the MAC Roundtable “Key Determinants of Inequalities in Cancer Survival across Europe” (EP, 05 12. 2013) • Ad hoc-studies are necessary to investigate the reasons of cancer inequalities (e.g. access to early diagnosis and optimal treatments, organization of health care delivery). • New studies are necessary to better address emerging issues related to the management of elderly patients and of survivorship including quality of life. • To reduce the childhood cancer survival gap in EU, twinning programmes should be promoted i.e. pairing medical institutions in high-income countries with those in low/middle-income countries. • To ensure good clinical cancer care is important to follow evidence-based clinical guidelines covering the whole patient pathway: early detection, diagnosis, treatment, monitoring and palliative care. Preventive strategies are also vital phases of cancer care. • To address low survival, there is need for organizing cancer services to ensure that all patients received high quality cancer care strengthening the governance of cancer care and monitoring and benchmarking performance through better data. • International studies on population-based cancer survival are vital to disclose inequalities across EU countries and are based exclusively on data from population cancer registries. In order to continue to provide high quality data, they need legislative and financial support, as well as recognition of their work by medical societies, patient organizations and policy makers. Mechanisms for such support need to have full endorsement at EU level and their importance to be stressed in the relevant EU documents - communications, programs, such as, for instance, Horizon 2020).

  10. Making the EU institutions 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.

  11. To address the unacceptable disparities through the establishment of an EU Cancer Plan which guarantees an improved standard of care for European cancer patients according to Article 20 of the Council Conclusions on reducing the burden of cancer (Luxembourg, 10 June 2008): “which will address all aspects of comprehensive cancer control, including prevention, early detection, diagnosis, treatment, rehabilitation and palliative care through a multidisciplinary approach and consider the appropriate framework for effective cancer control policies and sharing best practices in cancer prevention and care”. • (the European Guide for Quality National Cancer Control Programmes recently approved by EPAAC might facilitate the EU institutions actions in this field).

  12. To make cancer a priority on the political agenda and to • address the disparities that cancer patients and families face • every single day of their lives throughout Europe (as agreed • in the “European Parliament resolution on combating cancer • in the enlarged European Union” (B6-0132/2008) of April 4th • 2008).

  13. Prospective incoming members of the European Parliament to place cancer firmly and transparently within their election mandate and to join the MEPs against Cancer (M.A.C.) Alliance.

  14. REMEMBER • In 2012, three European citizens died every minute from this deadly disease. • By 2035, there will be a cancer death in Europe every 10 seconds. • Cancer respects no borders • We need to act NOW!

  15. Thank you very much! Website www.ecpc.org Twitter @cancereu Facebook Page https://www.facebook.com/ECPCfb CHAMPIONING THE INTERESTS OF EUROPEAN CANCER PATIENTS (change footnote using Menu "View > Change headline/footnote")

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