COPD (chronic obstructive pulmonary disease) is a preventable and treatable disease that causes inflammation of the lungs, damages the lung tissue and narrows the airways provoking a significant burden for patients and the society.
Although 300,000 deaths a year in Europe are due to COPD, the disease is still neglected by healthcare systems and political authorities. Diagnosis occurs when it’s too late for patients, there is a limited number of rehabilitation programmes, and patients are not well supported in order to continue active lives.
To change this reality, EFA works to promote increasing cooperation between primary and secondary care for COPD patients in Europe to enable early diagnosis and treatment. Supporting people to stay in the working process, for as long as possible, will result in a better quality of life and consequently less costs. We also thrive to increase access to rehabilitation for those patients that need it, including smoking cessation services. Our COPD project was launched on June 2010 at the European Parliament to unite medical, political and patient communities to adopt a coordinated and comprehensive EU-wide strategy on COPD.
People who suffer from COPD do not usually go to see a specialist or primary care physician as they believe they have a mere smoker’s cough. However, a timely detection of COPD could improve the quality of life of patients and their families and reduce the economic burden of the disease. For example Denmark saves annually 180 million DKR since they recommended screening for COPD.
EFA's network of expert patients drive our asks for COPD
Together with patients from all over Europe, we have published several reports to shed light on the need to invest on COPD prevention and care to provide a harmonised approach for COPD patients across Europe.
In 2011 we launched a call to action for COPD to urge EU representatives to make COPD a political priority. The call proposes 7 action points and was supported by partner medicals, environmental and public health organisations.
Every year on the World COPD Day, we activate our network to bring new facts and figures at European level to urge for targeted actions to tackle COPD. This has been the case in 2014, 2013, 2011 and 2010. More importantly, to date we have published the following patient data:
- The report "Harmonizing Prevention and Other Measures for COPD Patients across Europe" explores prevention, care and rehabilitation policies for COPD in 19 European countries. The report is the result of a survey done in the summer of 2014 by COPD specialists and patients in each of the countries studied. The results of the survey will serve COPD national associations and patients to better understand how the health system works in their country and what needs to be done to achieve a European harmonization of the minimum standards of care as identified by EFA's COPD Working Group. The survey was selected among the "Best COPD abstracts in COPD management" at the 2015 European Respiratory Society Congress. Do not miss the abstract brief summarising the publication findings.
- “Real world burden of COPD: Employed vs Not in paid Employment Patients” a study that was published in the Journal of Health and Productivity in December 2013.
- An EFA booklet for patients with respiratory disease,"Enabling Air Travel with Oxygen in Europe", published in 2013 in collaboration with the European Lung Foundation (ELF). The booklet, endorsed by a Member of the European Parliament Keith Taylor, offers practical help for people who have to travel by plane with oxygen, while presenting patient testimonies and offering evidence which points to ongoing discrimination against passengers with oxygen therapy needs. EFA clearly points out the extortionary behavior of some European airlines, who will charge up to 7x the price of normal airfare to provide oxygen to its passengers. EFA seeks standardised medical forms all for European airlines, permission for passengers to bring their own portable oxygen concentrators (POCs) onboard aircraft free of charge and obligate the provision of patients in with oxygen free of charge when requested in advance.
- We launched a book calling for eight Minimum standards of care for COPD patients in Europe, ranging from early diagnosis to access for pulmonary rehabilitation. Published in 2013, the book highlights best national practices and identifies gaps in care common to many European countries.
- We published the EFA Book on COPD in Europe: Sharing and Caring in 2011, to highlight the common problems confronting COPD patients across Europe and accounts for different approaches taken to address these issues.
To raise awareness on COPD among the Members of the European Parliament, in June 2011 we organised the 1st COPD Workshop at the European Parliament, focused on prevention and diagnosis. Hosted by MEP Seán Kelly, it was attended by patients, leading specialists, public health experts and national representatives. It was a successful event that had a follow up 2nd COPD Workshop at the European Parliament in November 2012, focused on care and research. Hosted by MEPs Seán Kelly and Karin Kadenbach, it served to discuss the disease burden and how it undermines the European economy.
At the moment, we are finalising an overview to harmonise, prevent and explore other measures to support COPD patients across Europe, an EFA COPD survey report that we will publish soon.