EFA Advocacy for Clear


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EFA Advocacy for Clear

  1. 1. Announcement of a European Call to Action on COPD<br />Marianella Salapatas<br />EFA President<br />msalapatas@gmail.com<br />www.efanet.org<br />
  2. 2. The European Federation of Allergy and Airways Diseases Patients’ Associations<br /><ul><li>A non profit network of allergy, asthma and COPD patient organisations
  3. 3. Representing 32 member organizations in 20 European countries, and over 400.000 patients
  4. 4. EFA aims to substantially reduce the frequency of these diseases, minimise their societal implications; improve health-related quality of life of patients; and ensure full citizenship of people with these conditions </li></li></ul><li>COPD in Europe<br /><ul><li>4 to 10 percent adults have COPD, 44 million
  5. 5. Total financial burden €102 billion and increasing
  6. 6. Growing social burden: 21 %of COPD patients are severely disabled</li></ul>“COPD is predicted to be the third leading cause of death in 2030” <br />World Health Organisation<br />
  7. 7. Will Europe suffocate or breathe?<br />COPD is preventable and treatable,yet:<br /><ul><li>Tobacco smoking, first risk factor in COPD, remains high in Europe
  8. 8. COPD and its risks factors are poorly known among the General Public
  9. 9. Access to diagnosis is difficult
  10. 10. Access to treatment is far from optimal in many EU countries</li></li></ul><li>Will Europe suffocate or breathe?<br />Whether Europe will suffocate or breathe will depend on the political will and actions of all stakeholders: Patients, Healthcare Professionals, and Decision-makers at European level and in Member States.<br />The following actions should be taken by the European Parliament, European Commission and European Council:<br />
  11. 11. 1. Make COPD a Political priority<br />We call on the EU Commission to recognise COPD as an urgent, preventable and real public health problem and to adopt a comprehensive and integrated approach<br /><ul><li>To curb the current trend, the social and epidemiological impact of COPD must be recognised now
  12. 12. The economic and social impact is such that this can only be effectively done through a coordinated and comprehensive EU strategy</li></ul>“The prevalence and mortality of COPD would not be so high had their been earlier interventions at institutional and political level”<br />
  13. 13. 2. Increase awareness of COPD<br />EU and the Ministries of Health should implement large scale public health campaigns to better prevent the disease and to favour early diagnosis<br /><ul><li>Amongst the general public, COPD is still often seen as ‘just a smoker’s cough’, yet it can be deadly
  14. 14. COPD receives poor media attention</li></ul>“When I heard I had COPD, I had no clue what it was”<br />“It’s difficult to obtain adequate information from GPs ”<br />
  15. 15. 3. Prioritize the early diagnosis of COPD<br />The EU should promote best practices on early diagnosis and the national authorities should ensure that it is available and GPs are able and willing to do it<br /><ul><li>Early diagnosis can prevent progression of the disease, severe disabilities and mortality. Yet GPs often can’t do it</li></ul>“My Breathlessness when walking was attributed to air pollution and stress. It wasn’t until 2 years later and after many visits to doctors that I was diagnosed. Unfortunately by then my lungs were in very poor condition”<br /> ”<br />
  16. 16. 3. Prioritize the early diagnosis of COPD<br />
  17. 17. 4. Improve the care and management of COPD<br />The EU should adopt measures in support of ensuring and sharing best practices of care for COPD patients at every level, including: <br /><ul><li>Equal access to treatment
  18. 18. Palliative care
  19. 19. Patient information and education
  20. 20. Rehabilitation programmes
  21. 21. Patients and patient representatives as equal partners in their care and health policy</li></ul> “With COPD you are not treated like an individual - everyone gets the same treatment and if you don’t fit into the little box – too bad”<br />
  22. 22. 5. Prevent COPD<br />The EU and Member States should put in place prevention campaigns and initiatives, in order to reduce the risk of COPD<br /><ul><li>Raising awareness about the disease and its early symptoms is a simple way to prevent COPD, and unnecessary burden and costs to patients and society
  23. 23. Smoking is the main cause of COPD, but smokers often don’t know this disease like they do lung cancer</li></ul>“ Eleven years ago I got a cold which did not go away. It turned out to be COPD.”<br />
  24. 24. 6. Improve Air Quality<br />The EU and the Member States should strive to improve outdoor and indoor air quality, including:<br /><ul><li>Binding measures to abolish smoking in both the work place and public places across Europe
  25. 25. A joint framework on healthy air indoors</li></ul>“ I couldn’t let my smoking kill me. Today I do medicines, I swim and I walk a lot and cope very well with my COPD” A patient who quitted smoking.<br />
  26. 26. 7. Support research on COPD<br />The EU and Member States should prioritize research in real life, basic and prevalence research in respiratory diseases and in prevention to:<br /><ul><li>Improve the care of COPD, and quality of life of patients
  27. 27. Understand the mechanism of development of COPD
  28. 28. Address the lack of comparable prevalence data in Europe
  29. 29. Develop effective treatments and find the cure</li></li></ul><li>Support the Call !<br />We call on all stakeholders to support our 7 points call to action and call upon the EU to take the necessary steps to develop a strategic, comprehensive and integrated European approach to respiratory diseases with a focus on COPD <br />
  30. 30. Support the Call !<br />“I can do the groceries, but can no longer take care of my youngest grandchild as I do not have the strength to take her in my arms anymore.“<br />Gunilla<br />
  31. 31. THANK YOU.<br />EFA European Federation of Allergy and Airways Diseases Patients' <br />Associations is a Partner of the Year of the Lung <br />in Memory of Mariadelaide Franchi<br />EFA <br />35 Rue du Congrès<br />1000 Brussels, Belgium  <br />www.efanet.org<br />
  32. 32. Call to action: 7 points<br />1. Make COPD a political priority<br />2. Increase awareness of COPD<br />3. Prioritize the early diagnosis of COPD<br />4. Support an integrated and multidisciplinary patient-centered approach to the treatment of COPD to improve the care and management of COPD<br />5. Prevent COPD<br />6. Improve Air Quality<br />7. Support better understanding and management of COPD through research<br />