Respiratory diseases into EU & national policy agendas – Patients: Action !

1. Respiratory diseases into EU & national policy agendas – Patients: Action! Isabel Saraiva EFA Board Member RESPIRA Board member saraiva49@gmail.com – info@efanet.org www.efanet.org

2. About EFA • Founded 1991 • Office in Brussels • Allergy, asthma, COPD (since 2003) • 36 associations, 24 countries, 500.000 patients/carers • 2014 Croatia & Latvia joined • EFA role versus role of national members • Uniting at the EU level • Collaboration • Sharing knowledge & best practices • Capacity building • Tools/Facilitation for policy change • Funding 2014: EC operational grant for core activities (60%), industry 10 companies, membership fees, EC project grants

3. EFA Family

4. Vision & Mission EFA is dedicated to making Europe a place where people with allergy, asthma and COPD: • Have the right to the best quality of care and safe environment • Live uncompromised lives • Are actively involved in all decisions influencing their health • EFA aims to be a powerful European network: • Advocates at EU level for the needs of people with allergies, asthma and COPD • Values all members equally • Implements best practices • Creates patient-driven projects • Cooperates with healthcare professionals, scientists, other NGOs Betty Sutton, ready for patient perspective at the EP

5. Respira-Portugal • Established in 2007, national scope • EFA member since 2013 • 400 members - COPD patients, their friends, family and careres • Financed bymember’s fees and sponsorship by private companies

6. Respira: Mission, Objectives, Goals RESPIRA is a association which sets patterns for the awareness, prevention and care of people with COPD and other respiratory diseases • Support: health promotion, best practices • Awareness: COPD, health care access • Work: public, health professionals, authorities, schools • Help: members: rights, obligations, privileges • Share: news, reports, information • Increase: memberships and partnership

7. COPD in Portugal • Prevalence: 14,2% (last report waiting for publication) and more men than women • Second cause of hospital confinement (respiratory diseases) • Total cost( ambulatory) of COPD: 242 millions of euros (2007) • 100.000/531 specialists and 12 rehabilitation centers

8. Advocacy: Role of Patient Organisations • Listen, collect & summarise patient voices, experience, needs and expertise, • Represent these to healthcare professionals & policy makers – anyone having impact in care/prevention • Facilitate patient participation • Facilitate communication, partnership, collaboration and greater understanding between them • Take advantage of unique position of patient organisations: neutral, non profit-seeking, patient at the core – ideally placed to influence • ENSURE PATIENT VOICE IS HEARD – in research, policy, funding and public arena

9. Fighting CRD from patient perspective: • Prevention • Smoking cessation • Early diagnosis • Health care • Social support • Food labelling • Medicines • Rehabilitation • Reimbursement • Information • Education • Adherence, concordance • ICT • Indoor Air • Outdoor Air • Chemicals • Treatment • Society • Health, Env & Research Policy • Prevention • Care • Medicines • Quality of Life • Finding the cure

10. Work programme ACCESS TO CARE – PARTICIPATION – SAFE ENVIRONMENT PROJECT PROGRAMME CORE PROGRAMME + ALL CORE ACTIVITIES Advocacy: EFA Manifesto, EU chronic diseases agenda Medical devices Medicines: EMA PCWP Pharmacovigilance E-Health Tobacco Air pollution Chemicals Advocacy training PATIENT PERSPECTIVE COLLABORATION- PARTNERSHIPS PATIENT PARTICIPATION↔ PATIENT PERSPECTIVE - EVIDENCE FOR POLICY

11. Advocacy - EFA Manifesto 3 priorities 1. Develop an EU strategy on chronic diseases with disease specific chapters: Share best practices & benchmark 2.Invest in prevention – tackle health determinants: Tobacco, smoke free, outdoor air pollution, indoor air quality, pollen monitoring, chemicals, labelling of food ingredients 3.Help ensuring equal access to care for each patient Discrimination, health inequalities, patients’ participation, early & accurate diagnosis, patient safety, information & health literacy, funding for patients’ organisations, funds for EU health policy manifesto.efanet.org

12. Publications • New!: EFA corporate leaflet • EFA Manifesto for EP Elections! • Minimum Standards for COPD Care in Europe 2013 (EFA Book on COPD – Sharing & Caring 2009) • Enabling Air Travel with Oxygen in Europe, 2013 • Respiratory Allergy in Europe: Raise Awareness Relieve Burden, 2012 Available at www.efanet.org

13. Future: EFA Strategic Plan 2015-2020 • Kick-start! AGM June 2014 Workshop • Starting point: members are EFA – EFA is a tool, not an end in itself • Analysis external environment: policy, priority, stakeholders, funding… • Key/ideal added value of EFA to members • SWOT: internally, externally - partners • 3 strategic goals (refine): • Access to good quality care • Participation: patient involvement in all decisions influencing their health • Safe environment • Key actions for these goals • Process: Members Strategy Committee, consultations • Draft Plan Dec 2014/Jan 2015 EFA 2015-2020

14. Finally: GSK & EFA • Sustainable long term partnership – GSK believes in patient’s voice • Sustainable partnership agreements – EFA Framework for sustainable partnership & GSK codes and commitment • Project support • Respect • Trust • Independence • Mutual learning • Ongoing dialogue, informalexhange, not interrupteddespite change in contact person • GSK HAB Health Advisory Board membership from 2008

15. Thank you! European Federation of Allergy and Airways Diseases Patients' Associations  (EFA) EFA 35 Rue du Congrès 1000 Brussels, Belgium  www.efanet.org Follow us on twitter @EFA_Patients & Facebook RESPIRA Tel. + 351 96 4 926 708, + 351 211 954 697, Email direcao@respira.pt , geral@respira.pt - www.respira.pt