The Role of Patients in EU Policy Development

1. The Role of Patients in EU Policy Development European Health Forum GasteinOctober 2003 – Bad Gastein Presented by Erick SavoyeDirector of the European Men’s Health Forum

2. European Patient Advocacy • Background • People increasingly demanding and using information • Consumers of health care more empowered and proactive • Rapidly developing EU level coordination • Patient advocacy, ‘flavour of the year’ • Umbrella groups mostly organised by medical condition/therapeutic areas • General campaigning topics: • Increased EU recognition of patient needs e.g. improved health information to patient, access to innovations in medicines • Strengthening the role of patients in the decision-making process

3. An Active Movement • Consulting with the Commission: • 2001 – EU Health Forum • G10 High Level Group (Patient Mobility, Innovation and Provision of medicines) • Lobbying in Parliament • Lobbying activities of larger Cancer, AIDS/HIV groups • Economic burden: a key message for other groups • Ageing, the next big issue • Growing importance of the role of patient groups • Community expands with enlargement • Moving boundary for areas of national competence • Launch of the EPF

4. The European Patients Forum • From July 2001… • Limited patient representation within the G10 • Revision of EU legislation affecting Direct To Consumer Information • The absence of a patient umbrella organisation • Encouragement and support from the Commission • … to creation in Jan 2003 • The feat of patient groups • One body to address and be consulted on issues regarding the interest of patients • A strong voice for patients, independent of that of consumers

5. The European Patients Forum • Objectives • To facilitate a forum for all pan-European patient organisations • To share information in order to strengthen the role of European patients • To offer the views of patients by means of a representative and independent resource • To provide a forum for patient groups to develop commonpositionson EU health policy issues and lobby on their behalf • To become a point of reference for EuropeanInstitutions on patient-related issues • Toco-operate on projects aimed at improving the health outcomes and quality of life of European patients

6. The European Patients Forum • Criteria for membership • Legitimacy • Representation • Democracy • Accountability and consultation • Transparency • Full and associate members • Council of members • Executive Committee • Elected members

7. The European Men’s Health Forum • A member of the European Patients Forum • Witnessed the birth of the EU Health Forum and the European Patients Forum • Pan-European advocacy organisation that spans many therapeutic areas • Works to improve health outcomesfor men in Europe • Promotes collaboration with EU level stakeholders to include men’s health issues in the EU health policy and research agenda. • Recently published report • More information: www.emhf.org

8. The European Patients Forum • How are decisions taken and priorities set? • Council • Approval budget and accounts • Policy positions • Membership approval/dismissal • Election Executive Committee • Executive Committee • Agenda/priorities • Administration • No funding • More information: www.europeanpatientsforum.org

9. The Paradox of the Funding Issue • Some MEPs concerned about industry’s financial support for patient advocates • Pan-European patient groups have clearly demonstrated the value of their contribution… • … they are denied public health support • Limited ability for small NGOs to auto finance • Unlike their national counterparts or Pan-European consumer groups, they cannot receive core funding from public health sources • Recommendations of the G10 Medicines Report

10. The G10 Report 7 May 2002 Funding of Patient Groups ‘Patient groups have an important contribution to make to the development of health and medicines policy by articulating the needs and views of patients, scrutinizing new policy proposals and calling policy makers to account. Concern has been expressed, however about the reliance of small NGOs on external funding, and their, need from time to time, to have recourse to industry funding’ Recommendation 13: ’that the Commission consider providing core funding for European patient groups to enable them to participate independently in the debate and decision-making on health matters in the EU’

11. Commission Communication ‘A stronger European-based pharmaceutical industry for the benefit of the patient’ 1 July 2003 ‘To make available, under the new Public Health programme, funding for the patient and other public health organisations for networking activities at an EU level and projects on patient information …’ EPF views ‘The European Patients Forum welcomes the clear focus of the Commission…’ and ’… urges European Institutions to ensure core funding for representative pan-European patient organisations…’ EPF press release Aug 2003

12. G10: a real opportunity for patients? • The Commission’s support for EPF has now stopped • Uncertainty of the Parliament’s vote over budget line proposal for 2004 • EP decision likely to affect the future of the EPF • What about other Pan-European patient groups? ______________ In the meantime, no support and a lot of effort from pan-European patient groups has gone into a long battle, the outcome of which still remains uncertain.