As representative of patients living with chronic obstructive pulmonary disease (COPD), we marked the World COPD Day on the November 15th with several publications, including a political video within our #COPDMove video series. Regular physical activity is key for COPD patients as it not only improves their health and wellbeing, but literally adds life into to their years. Under the theme The Many Faces of COPD, EFA has been calling on European and national authorities to promote active lives for COPD patients, by facilitating the access to and reimbursement of pulmonary rehabilitation, support for regular exercise and by staying in the workforce.
How? EFA campaign has been full of activities in order to achieve the awareness of individuals, policy makers and institutions to know about COPD.
Despite it affects 1 in 10 adults over 40 in Europe, COPD is remain too unknown disease to many. Patient associations have been advocating for more information about the disease, better healthcare at least covering the minimum standards of care, and more support to help COPD patients cope with the disease. However, the disease and patients needs is far too often neglected.
At EFA, together with our members and patients across Europe we have been showing that COPD patients fight the disease back, while asking for more support for those that cannot make the journey alone. You have to be strong and determined to cope with the disease, as it is a “total” disease, affecting your whole body and life. You need be very disciplined and regular with your treatment and routine. #COPDMove testimonials is a project from patients to patients, to give hope to others by showing a model that works in many ways as there are individual patients, to motivate patients and carers not to give up to COPD.
In addition to a video resuming the three main asks for care for COPD patients, World COPD Day was also marked by many politicians who took a stand for COPD patients.
“COPD is on the Commission’s agenda”, said EU Health boss
The EU’s Health Commissioner Vytenis Andriukaitis agreed that COPD in Europe is worrisome. In an interview he announced that COPD is on the European Commission’s agenda and revealed his objective to improve COPD early diagnosis. “I am promoting very much spirometry. We have enough science, evidence showing that those results can help monitor the lung systems,” the Commissioner said in an interview arranged by the European media Euractiv, which prepared a special report made up of various articles on COPD on the occasion of the campaign. “We will see how to discuss those issues in the Steering Group on Promotion and Prevention, just established, and to propose to Member States how to tackle those issues in their primary care system”, he announced.
EFA’s views on diagnosis and management of COPD where also reflected in the article. Commission’s focus on strict preventive measures like tobacco control policies is important but also patients empowerment must be brought to the table. “It’s about patient empowerment, giving patients the power to fight COPD, through knowledge and informed choice of treatment. Each COPD patient will develop their own strategy but to get there, patients need to be in the driving seat to deal and move on with COPD. They need to feel the power that they are in control of their lives”, we explained.
Members of the European Parliament stand up with COPD patients
Several Members of the European parliament also had thoughts for COPD patients. Austrian MEP Karin Kadenbach highlighted in an interview the need of take action at EU level on COPD. She said that COPD should be included in tobacco health warnings, a step that could increase awareness about this common disease. “The EU cannot hide behind the lack of health competence to act”, she stated. “We can adopt EU policies under our responsibility and positively affect COPD, like tobacco control measures, air pollutants levels, research, or healthy ageing policies.”
Italian MEP Alberto Cirio also published an opinion with the same thinking. “The EU has no excuse not to act. In the case of COPD, prevention is linked to a range of other policies that are within the Union’s remit. Environment, energy and industrial policy converge on this issue, allowing for a reduction of risk factors that is valuable for COPD patients and non-patients alike. In other words, reducing air pollution benefits not only those who suffer from respiratory diseases, but also the quality of the environment (with its downstream effects) and our quality of life”, he said in an opinion published in Parliament Magazine.
UK MEP Catherine Stihler wants to see a “holistic approach combatting the condition, by helping those that suffer from COPD and preventing people from developing the disease in the first place. More can be done to help those living with the condition to have a better quality of life, while anti-smoking laws and education can help prevent people contracting the disease in the first place.”
Italian MEP Piernicola Pedicini said that “in order to effectively address chronic respiratory diseases, we must fight one of the major risk factors: pollution. Member States need to commit to a renewable energy and circular economy instead of subsidizing fossil fuels and incinerators.”
Czech MEP Katerina Konezna declared that “unfortunately no medicine can prevent COPD, even when complex and very expensive treatment is available. We have to raise awareness of this condition”.
Croatian MEP Biljana Borzan wants to see “state-of-the-art therapy and guaranteed rehabilitation by using any required medical multidisciplinary intervention to keep people in the workforce and in their own homes for as long as possible”.
All of them are Members of the European Parliament that want to do more for patients and respiratory health. They all were initiators of the written declaration on chronic respiratory diseases that was signed by 1 in 3 Members of the European Parliament.
And what do the patients think?
EFA President Mikaela Odemyr was interviewed by Euractiv. Mikaela stressed the need of prevention of the disease in order to eradicate COPD from being a public health crisis in Europe, but also mentioned the advantages of a better access to rehabilitation through physical exercise and physiotherapy and the need to tackle the differences on public health services among countries. “Access to health disparities between EU countries is huge”, she pointed out. “The main challenge is that our healthcare systems have been conceived to treat, more than to prevent, and to treat in the short term”.
See EFA’s World COPD Press Release here
#COPDMove in the news
EFA #COPDMove project was a core part of our awareness raising campaign during World COPD Day.
We released a special video that gathered the main political asks from COPD patients.
More news coverage on World COPD Day:
The Parliament Magazine: Give COPD patients the chance to live healthier through exercise
EU Observer: Europe's 'invisible' killer, chronic lung Disease
Euractiv Special report:
The true face of the second leading cause of death
Three asks from EFA Patients on World COPD Day
A cough never killed anyone? Chronic lung diseases rank as second largest killer
Life-threatening lung disease: Europe’s ‘unknown’ killer
Kadenbach MEP: Tobacco warnings should mention chronic obstructive pulmonary disease
Patients’ leader: Reimbursed anti-smoking programmes are a way to kill COPD
EU’s approach to COPD remains focused on tobacco control
Furthermore, special mention to some of our members that also ran their own nationals campaigns. (their activities in the ‘Value of patient organization’ section