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ECPC INVOLVEMENT IN EU CANCER POLICY Jana Pelouchová, Rare Cancers Action Group, ECPC

ECPC INVOLVEMENT IN EU CANCER POLICY Jana Pelouchová, Rare Cancers Action Group, ECPC. CONFERENCE ON EFFECTIVE PATIENT ORGANIZATION PARTICIPATION IN DECISION MAKING PROCESS. Riga, 24.2.2011. NOTHING ABOUT US WITHOUT US. ECPC SPEAKS WITH A SINGLE VOICE FOR ALL CANCER PATIENTS.

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ECPC INVOLVEMENT IN EU CANCER POLICY Jana Pelouchová, Rare Cancers Action Group, ECPC

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  1. ECPC INVOLVEMENT IN EU CANCER POLICYJana Pelouchová, Rare Cancers Action Group, ECPC CONFERENCE ON EFFECTIVE PATIENT ORGANIZATION PARTICIPATION IN DECISION MAKING PROCESS Riga, 24.2.2011

  2. (change footnote using Menu "View > Change headline/footnote") NOTHING ABOUT US WITHOUT US. ECPC SPEAKS WITH A SINGLE VOICE FOR ALL CANCER PATIENTS ECPC SUSTAINING PARTNER MEETING 2007

  3. Summary: ECPC: "Nothing about us without us" • Representing >300 cancer patient groups in 42 countries • All cancers – common and rare • Promoting the fundamental rights of patients • Run and governed by patients • Increasing cancer patients' influenceover European health and research policy • 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 • High visibility with EU Commission, EMA, EU Parliament

  4. ECPC's Membership • Over 300 Members Organisations • 227 Full, 81 Associate Members • Representing 42 countries, including all EU27 • Growth in membership makes ECPC's voice for cancer patients and influence stronger • Support capacity building efforts of ECPC member organizations (master-classes, advocacy tools, toolkits, advocacy information)

  5. ECPC’ involvement in major EU cancer policy activities Influence on EU policy impacting on prevention, detection and treatment of Cancer • Council Conclusion on Cancer • European Parliament Cancer Resolution Membership/Participation in other EU initiatives • EMA Patient & Consumer Working Party (PCWP) • EU Health Policy Forum • EUnetHTA Stakeholder Forum • "Partnership for Action Against Cancer" Steering Group • Rare Disease Task Force / Committee of Experts for Rare Diseases • FP7: Development of European Guidelines for Quality Assurance of Colorectoral Cancer Screening • FP7: RARECARE - Surveillance of rare cancers in Europe

  6. Some of ECPC's achievements • Cancer patients given a key voice in a number of EU initiatives: EU Commission; Parliament; EMEA e.g. on patient information, cross border medicine, rare disease policy, screening guidelines, … • 2006“Warsaw Declaration”co-signed by more than 140 cancer advocates, calling on policy makers, politicians and key stakeholder for action on Cancer • 2009:Cancer Partnership, ECPC EU Election Campaign, Conference Step by step guide • 3 very successful "Masterclasses on patient advocacy“ • 2010: Forum Against Cancer Europe (FACE):more than 80 members of the EU Parliament showing their support for cancer issues and 6 FACE Workshops organized in the European Parliament (eg. health inequalities, rare cancers)

  7. ECPC engagement in EU initiatives – in 2010 Clinical Trials Directive: ECPC has submitted a detailed response on the consultation of the Commission and has given cancer patients a voice on clinical trials and ethic reviews on various workshops and conferences. Patient information: ECPC has proposed numerous amendments to the parliamentary discussion, and organised a number of meetings with rapporteurs and coordinators in the different Committees. ECPC hopes that this will help create the momentum to make "patients first" a reality in patient information. Cross border medicine: the draft Directive for Cross-Border Healthcare was stopped by the EU Council of Health Ministers in 2009 mainly due to fears about its financial impact. ECPC is lobbying for cross boarder healthcare and is convinces that to reach political agreement, some support from the cancer patient community is needed. 2020 EU Strategy Consultation: ECPC worked as an important part of the main drafting group to prioritise cancer in the European Health Policy Forum's response to the EU 2020 Strategy.

  8. ECPC engagement in EU initiatives – in 2010 Falsified medicines: ECPC proposed amendments to the legislative proposal to highlight issues of a) inspection by competent authorities; b) monitoring of the internet; c) awareness campaigns about counterfeit medicines; d) use of warning signs and e) the issue of online pharmacies and patient safety. FACE champion Marisa Matias MEP was European Parliament Rapporteur Safety Monitoring of Medicines (Pharmacovigilance): ECPC supported and contributed to the current legislative proposal with amendments on: a) Patient reporting; b) reporting of adverse drug reactions; c) the inclusion of efficacy; d) transparency and e) online portals. ECPC worked closely with EPF to influence the amendments and the final vote in the EU Parliament's Committees. Pharmacy services and online pharmacies: In the parliamentary debate, ECPC has presented concerns that a) the physical location of online pharmacies are often false, b) medicines are delivered from different locations, c) often online pharmacies do not require a medical prescription in order to purchase drugs, d) selling arguments included not having to see a doctor in order to access drugs, and f) do not declare side effects, drug storage, and shipping conditions.

  9. ECPC engagement in EU initiatives • European Commision´s proposals addressing the risk of falsifications: Amendment to the Directive 2001/83/EC(sales at distance to public authorised in the Member State of origin, website providing minimum of info, common logo displayed, development of an authorised list of sales entities, safety measures like serial No. or seal, strict requirements for imports from outsider EU etc.) • Cancer research firmly on the agenda of the European Parliament Written Declaration 80, drafted by FACE Champions and submitted in Oct 2010, in favour of more collaboration in cancer research, forwarded to the President of the European Parliament and announced in the plenary session. By February 2011, ECPC succeeded in collecting signatures from a majority of MEPs in support of the Declaration.

  10. Making the Cancer Partnership Work • cancer prevention, screening, sharing information among member states being the topics at: ECPC Cancer Summit 13. – 14. October 2010 • European Commissioner John Dalli • EU Belgian presidency´s leadership on cancer (Olivier Belle, Belgian Minister of Social Aff. and Public Health): National Cancer Plans (16 EU countries) and 12 EU countries have measureable targets monitoring success • Importance of Cancer Research • Cancer Patients as Pro-Active Partners (new phenomenon „iPat“)

  11. European PartnershipAction Against Cancer • ECPC is involved in the Partnership to ensure that the patient perspective is at the centre • Spoke at official launch: 29 Sept 2009 in Brussels,ECPC collected cancer patient stories from all 27 EU member states to give cancer a face • Member of the Steering Committee ECPC now involved in a number of work packages, representing the patients' voice

  12. European Medicines Agency • ECPC Member of the "EMA Patient / Consumer Working Party"& Health Professional Working Group • Other projects: • EMA Transparency Policy Project • EMA Information for the Public • Involvement of patients and consumers in preparation and dissemination of EMA communications • Clinical trials in third countries • Update on website construction • ECPC part of the core drafting group for a ‘Code of Practice between patient groups and industry'

  13. Rare Cancers Action Group • ECPC involved in a number of rare cancer activities: • ESMO Rare Tumours Conference • RARECARE FP7 Project • EU Committee of Experts on Rare Diseases (DG Sanco) • ESMO Call to Action Against Rare Cancers • ECPC Rare Cancers Position Paper ECPC Rare Cancers Action Group (March, 2010) • „ We need action, not another group“ • Share best practice and collaboration • Raise awareness about the specific challenges of rare cancers • Understand existing policy in the context of rare cancers • Support capacity building of rare cancer patient groups • Build partnerships on rare cancers with international organizations

  14. Rare Cancers Action Group Challenges of rare cancer patients defining prevalence: less than 5 out of 10.000 and incidence: less 6 in 100.000 • Late or incorrect diagnosis • Lack of access to appropriate therapies and clinical experts • Limited number of clinical trials (small number of patients) • Lack of interest in developing new therapies due to limitations in the market • Limited number of registries and tissue banks

  15. Rare Cancers Action Group Workshop on Rare cancers – urgent need for policy • European Parliament 12 January, 2011 • Petru Luhan MEP • Marisa Matias MEP • Representatives of National Cancer institutes (UK, France) • Head of the ECPC Rare Cancers Action Group Kristina Andrekute • Prof. Jean-Yves Blay, EORTC (Research and Treatment of Cancer) • Prof. Paolo Casali, Instituto Nazionale Tumori • A.Fehervary, Novartis Oncology Europe

  16. Rare Cancers Action Group Challenges of reflecting the specific of living with rare cancer: Category “RARE DISEASES” - Category “CANCER” Looking forward to a time when all cancers will be rare diseases! (dr. Filippo De Braud, Instituto Europeo di Oncologia) • need for pan-European solution for rare cancers • need for patient advocacy to prevent rare cancer patients left in the shadow • developing new drugs (exceptional approach in exceptional circumstances) • economic pressures: • budget impact of orphan drugs on healthcare system represents 1-3% of pharmaceutical spending (innovative pricing models and policy changes expanding access to orphan drugs)

  17. Forum Against Cancer Europe (FACE)Making Cancer an EU priority • FACE: an all party informal group of MEPs from across member states committed to promoting action on cancer as EU priority • 85 MEPs as FACE Champions New campaign to win new MEPs for FACE • ECPC provides secretariat & FACE website: www.forumagainstcancer.eu

  18. Major Conferences & Initiatives whereECPC represented the patients‘ voice Just some examples from 2008-2010… • ESMO 09/2008 • ESMO Rare Tumours Conference, 11/2008 • EPPOSI Clinical Trials 04/2009 • European Forum for Good Clinical Practice (on centralized CTA) 07/2009 • Lance Armstrong Cancer Summit, 08/2009 • European Action Against Rare Cancers (Steering Committee membership) • ECCO/ESMO, 09/2009 • EU Cancer Partnership Launch event 09/2009 • DG Research “Trends in translational research”, 09/2009 • ECPC Members in Action Conf./4th ECPC Masterclass 10/2009 • EPPOSI workshop on Rare Disease Therapy Development (Specific challenges of rare Cancers) 10/2009 • Daily challenges of Patient's Lives, EP 12/2009 • BBMRI Workshop on Biobanking, 12/2009 • EFGCP/ECRIN "Ethics Reviews of clinical trials", 01/2010 • European Voice Event, 03/2010 • DIA Euromeeting, 03/2010 • Euractiv Conference, 11/2010 • Health Consumer Powerhouse conference, 11/2010

  19. ECPC CEE Learning and Sharing Conference, 27-28 November 2010, Bucharest (Romania) • ECPC Members in Action 2010 „Bridging Cancer Care“ • Main goal: Capacity Building in our membership • Speakers from the EU Commission, EU Parliament, professionals, patient group representatives • Addressing Inequalities in cancer Care through Strong Patient Organisations • Challenges in Patient and Community Information • EU Policy and What It Means at the National Level • Supporting and empowering members in their advocacy work • ECPC Marketplace: Groups sharing best practice • Workshops: Screening and Early Detection, Patient Care Beyond the Clinic, Advocacy and Leadership Skills • ~110 participants from 30 countries

  20. "Advocacy Toolbox“ Capacity Building for members • Guide on how to organize patient conferences a step by step guide, with ready to use templates – great response • ECPC EU Elections Toolbox, with template letters • ECPC Manifesto against Cancer • ECPC Patients Rights Charter translated into other languages by our members • ECPC Rare Cancers Position Paper, Patients rights charters (translated in some languages by members) • How to build a patient-friendly website (guide) • Regular Member Updates, ECPC Newsflashes, Press Releases

  21. Young people and cancer A call to action launched by ECPC 9. 2. 2011 International Childhood Cancer Day • focusing on young cancer patient specific issues (isolation from their peers, isolation within the cancer community) • notably under represented within the society • more awareness needed (long time impact of lifestyle – healthy habits) ECPC hosting CONFERENCE ON YOUTH, September 2011 • healthcare and education professionals, researchers and policy makers invited • call for engagement: local, national and EU level

  22. What to find on the ECPC website • Facts about ECPC • Cancer Facts & Figures • Health in EU • Cancer plans e.g. in UK, France, NL, Hungary, Germany, Portugal, Italy… • Rare cancers policy • EU Regulation & Institutions • Advocacy Toolbox • How to organize patient conferences • How to build a patient website • Patients rights charters • Declarations as political tools • Events & Calendar • Where to meet ECPC board & staff Please visit: http://www.ecpc-online.org/

  23. ECPC Board & Staff Board (2010 – 2013) • Tom Hudson, Europa Uomo, Ireland • Sandy Craine, CML Support.org, UK • Tom van der Wal, Stichting Diagnose Kanker, The Netherlands • Simona Ene, Sarcoma Patients Euronet (SPAEN), Romania • Francesco de Lorenzo, FAVO, Italy • Sarunas Narbutas, OHLB Kraujas, Lithuania • Henk Van daele, Oncologic Centre Antwerp, Belgium Staff • Denis Horgan(Head of External Affairs) • Martin Lohr (Policy Assistant) • Danuta Rydlewska (Policy Assistant)

  24. (change footnote using Menu "View > Change headline/footnote") Thank you very much! Nothing about us – without us! Please get in touch!info@ecpc-online.org CHAMPIONING THE INTERESTS OF EUROPEAN CANCER PATIENTS

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