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EFA Advocacy for Clear

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Announcement of a European Call to Action on COPD Marianella Salapatas EFA President [email protected] www.efanet.org
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Page 1: EFA Advocacy for Clear

Announcement of a European Call to Action on COPD

Marianella SalapatasEFA President

[email protected]

Page 2: EFA Advocacy for Clear

The European Federation of Allergy and Airways Diseases Patients’ Associations

• A non profit network of allergy, asthma and COPD patient organisations

• Representing 32 member organizations in 20 European countries, and over 400.000 patients

• 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

Page 3: EFA Advocacy for Clear

COPD in Europe

• 4 to 10 percent adults have COPD, 44 million • Total financial burden €102 billion and increasing• Growing social burden: 21 %of COPD patients are

severely disabled

“COPD is predicted to be the third leading cause of death in 2030”

World Health Organisation

Page 4: EFA Advocacy for Clear

Will Europe suffocate or breathe?

COPD is preventable and treatable, yet:• Tobacco smoking, first risk factor in COPD, remains

high in Europe• COPD and its risks factors are poorly known among the

General Public• Access to diagnosis is difficult• Access to treatment is far from optimal in many EU

countries

Page 5: EFA Advocacy for Clear

Will Europe suffocate or breathe?

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.

The following actions should be taken by the European Parliament, European Commission and European Council:

Page 6: EFA Advocacy for Clear

1. Make COPD a Political priority

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

• To curb the current trend, the social and epidemiological impact of COPD must be recognised now

• The economic and social impact is such that this can only be effectively done through a coordinated and comprehensive EU strategy

“The prevalence and mortality of COPD would not be so high had their been earlier interventions at

institutional and political level”

Page 7: EFA Advocacy for Clear

2. Increase awareness of COPD

EU and the Ministries of Health should implement large scale public health campaigns to better prevent the disease and to favour early diagnosis

• Amongst the general public, COPD is still often seen as ‘just a smoker’s cough’, yet it can be deadly

• COPD receives poor media attention

“When I heard I had COPD, I had no clue what it was”“It’s difficult to obtain adequate information from GPs ”

Page 8: EFA Advocacy for Clear

3. Prioritize the early diagnosis of COPD

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

• Early diagnosis can prevent progression of the disease, severe disabilities and mortality. Yet GPs often can’t do it

 ”

“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”

Page 9: EFA Advocacy for Clear

3. Prioritize the early diagnosis of COPD

Page 10: EFA Advocacy for Clear

4. Improve the care and management of COPD

The EU should adopt measures in support of ensuring and sharing best practices of care for COPD patients at every level, including:

• Equal access to treatment • Palliative care• Patient information and education• Rehabilitation programmes• Patients and patient representatives as equal partners in their

care and health policy

 “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”

Page 11: EFA Advocacy for Clear

5. Prevent COPD

The EU and Member States should put in place prevention campaigns and initiatives, in order to reduce the risk of COPD

• 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

• Smoking is the main cause of COPD, but smokers often don’t know this disease like they do lung cancer

“ Eleven years ago I got a cold which did not go away. It turned out to be COPD.”

Page 12: EFA Advocacy for Clear

6. Improve Air Quality

The EU and the Member States should strive to improve outdoor and indoor air quality, including:• Binding measures to abolish smoking in both the work place

and public places across Europe• A joint framework on healthy air indoors

“ 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.

Page 13: EFA Advocacy for Clear

7. Support research on COPD

The EU and Member States should prioritize research in real life, basic and prevalence research in respiratory diseases and in prevention to:• Improve the care of COPD, and quality of life of patients • Understand the mechanism of development of COPD• Address the lack of comparable prevalence data in Europe • Develop effective treatments and find the cure

Page 14: EFA Advocacy for Clear

Support the Call !

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

Page 15: EFA Advocacy for Clear

Support the Call !

“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.“Gunilla

Page 16: EFA Advocacy for Clear

THANK YOU.

EFA European Federation of Allergy and Airways Diseases Patients' Associations is a Partner of the Year of the Lung

in Memory of Mariadelaide Franchi

EFA 35 Rue du Congrès1000 Brussels, Belgium www.efanet.org

Page 17: EFA Advocacy for Clear

Call to action: 7 points

1. Make COPD a political priority2. Increase awareness of COPD

3. Prioritize the early diagnosis of COPD4. Support an integrated and multidisciplinary patient-centered

approach to the treatment of COPD to improve the care and management of COPD

5. Prevent COPD6. Improve Air Quality

7. Support better understanding and management of COPD through research


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