Living with Chronic Obstructive Pulmonary Diseases (COPD)

More can be done at the local, national and EU level to improve COPD diagnosis, support smoking cessation and advance work and living conditions for people living with COPD

Globally, more than 300 million people live with chronic obstructive pulmonary disease (COPD).[i]

While cigarette smoking remains the primary cause of COPD, any smoker (vaping, pipe, cigar, marijuana, etc.) is at risk, as well as people exposed to secondhand smoke. While blaming patients with COPD for “reaping what they sow” may seem a knee-jerk reaction to COPD, there are many other risk factors that compound or cause COPD.

Occupational exposure to dusts and chemicals, long-term exposure to chemical fumes, vapors and dusts in the workplace, exposure to fumes from burning fuel, age and even genetics may have a hand in causing or exacerbating COPD.[ii]

Rather than demand action on hard-cold facts, EFA and our member partner organisations believe a patient-centred approach and voice is crucial to accomplishing the eradication of COPD, which, although a daunting task, is an accomplishable goal. Stefan is one of those patients, an average European with COPD.[iii]

For World COPD Day (November 21), and In light of EFA’s European Report “Active Patients ACCESS Care” on asthma and COPD patients’ access to diagnosis, care, prevention and patient empowerment, Stefan tells his story about living with this respiratory disease and what policymakers can do to improve Quality of Life.

It takes on average 3,4 years to be diagnosed with #COPD

In the beginning, I felt unsure. I recognized that during the last one or two years, I was running out of breath rather quickly and got exhausted quite fast when doing exercise. But I thought it is just a side-effect of smoking. And being in my early 50s, I cannot expect to be an athlete anymore, can I?

16 % of COPD patients get an initial wrong diagnosis, taking on average 5 years to be corrected

After things got a little worse, however, I felt it might be wise to consult a specialist, just to make sure everything was fine. I had to wait seven months for the consultation, a long time to make up theories about my condition – and looking at it now, a long time that I could have used to change my way of living. Although I thought a lot about it before, I was quite depressed when I finally got the diagnosis by the pulmonologist: asthma.

Since then, I used to take asthma medication and always carried an inhaler with me – in case of an exacerbation. Luckily, I never needed the emergency relief, but I could feel my condition becoming worse when passing streets full of traffic on my way to work and often due to bad air quality indoors.

During the years, however, I realised that my breathing got worse. I had shortness of breath even while doing daily routines such as going shopping or climbing stairs. Observing my condition, my wife pushed me to again seek a consultation. I was more than surprised when my general practitioner told me that the pulmonologist did a misdiagnosis. I did not have asthma, she told me. It was COPD.

That was a big shock. Why had I taken asthma medication for the last five years? What would happen now? Of course, I was not happy with my asthma, but after living with it for five years, it felt familiar. Being diagnosed with COPD scared me, I did not know anything about it. All the struggles, all the uncertainty; it would all start again.

More can be done to support and encourage not only temporary but permanent smoking cessation

As part of my COPD therapy, my general practitioner proposed that I should quit smoking. Easy to say but hard to achieve after 42 years of a daily smoking routine.

Written management plans are crucial and effective tools and should be part of treatment and active discussion with Health Carer Practitioners (HCPs)

For now, I can manage my COPD. My written management plan includes measures to prevent being exposed to indoor and outdoor risk factors and a nutritional plan.

Local, national and EU governments can do more to improve patient (and non-patient) Quality of Life

But I want to do more to keep my Quality of Live, to continue being productive. I would also appreciate more support from my government. Why can’t there be better regulation on indoor air quality? I spend most of the day inside and often, mould and odours make my condition worse. It would be rather simple to make my environment disease-friendlier.

EFA believes our patient-centred pillars of information, prevention and care and the patient voice are crucial in ending world COPD, and call on local, national and EU governments and HCPs to show leadership in implementing recommendations found in the ACCESS report on asthma and COPD diagnosis, care, prevention and empowerment. Our upcoming #ShowLeadership event in the European Parliament in Strasbourg (November 25-27, 2019) is a step in that direction. While we are under no illusion that COPD can be easily eradicated, we believe a roadmap getting us all there is not only possible but must be encouraged.

[i] Chronic obstructive pulmonary disease (COPD) is an umbrella term that describes chronic limitations in the lung airflow. It is a progressive and irreversible disease that causes inflammation in the lungs, damages lung tissue permanently and narrows the airways – making breathing progressively worse. COPD mainly affects people over the age of 40 and becomes more common with increasing age. COPD is currently more common in men than in women. In Europe, COPD is primarily caused by smoking and exposure to tobacco smoke, while in developing countries cooking stoves can also cause COPD.

References

[i] Chronic obstructive pulmonary disease (COPD) is an umbrella term that describes chronic limitations in the lung airflow. It is a progressive and irreversible disease that causes inflammation in the lungs, damages lung tissue permanently and narrows the airways – making breathing progressively worse. COPD mainly affects people over the age of 40 and becomes more common with increasing age. COPD is currently more common in men than in women. In Europe, COPD is primarily caused by smoking and exposure to tobacco smoke, while in developing countries cooking stoves can also cause COPD.

[ii] https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679

[iii] Stefan is not a real person. As testimonial, he is a composite of European COPD patient responses, based on data from EFA’s 2019 ACCESS report.

Maximilian Kunisch

Charles Kinney

EFA