Europe's 'invisible' killer, chronic lung disease
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According to the 2017 Global Burden of Disease Study, COPD accounts for 5.4% of deaths. (Photo: Tom Sinon)
By Paula Dear
With the number of cases on the rise, campaigners are calling on EU and national policymakers to help lung disease sufferers live longer, more active, lives by supporting rehabilitation services and interventions that keep them in work, at home and out of hospital.
The World Health Organization has predicted that COPD (chronic obstructive pulmonary disease) - a group of progressive lung conditions that cause inflammation and breathing difficulties, including emphysema and chronic bronchitis - will rank as the third-highest cause of death worldwide by 2030.
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The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) recently reported that the 2017 Global Burden of Disease Study suggested COPD had already moved up to become the second highest killer, accounting for 5.4 percent of deaths.
Mainly affecting adults over 40, the primary cause is tobacco smoke – including exposure to second-hand smoke – although genetic and environmental factors can also contribute.
Invisible and overlooked
Campaigners say COPD remains "invisible" and "overlooked" by much of society.
To draw attention to the disease, EFA and the European COPD Coalition (ECC) are running patient-focused campaigns to mark World COPD Day on 15 November.
Experts warn the disease is under-diagnosed, but studies suggest severe COPD affects between 4-10 percent of adults in Europe, and up to 15 percent when milder cases are included.
EFA president Mikaela Odemyr said COPD was a "devastating disease" that is often diagnosed late, thereby "limiting patients' capacity to fight back against the disease in time".
"To stop their bodies and lives deteriorating, COPD patients need a multidisciplinary team, including pulmonary physiotherapists, to guide and support them in extending their lives after diagnosis," she said.
But access to lung rehabilitation services was "very poor", with zero or only partial reimbursements available to patients in much of the EU, which in turn has led to a shortage of specialists, Odemyr added.
While exercise cannot replace medication, daily physical activity can help COPD patients' quality of life, says EFA, which is using the theme 'The Many Faces of COPD' to campaign for more patient support.
Severity of the diseases is lower in patients who are in employment, with a more active life also corresponding with fewer visits to lung specialists, lower usage of cortisone and antibiotics and less time spent in hospital, the group added.
Earlier this year they launched a 12-month project, COPD Move, which is publishing video interviews with patients, along with exercise tutorials, to highlight the importance of physical exercise to reduce the impact of the disease.
Exercising on a regular basis is the most important prerequisite to living longer but patients, especially those at severe stages, often feel too overwhelmed to start training alone, added Odemyr. She said exercises adapted to lung function, and professional and supervised support were "crucial".
Better prevention
One in three MEPs signed a written declaration in 2016 on the need to guarantee rehabilitation for chronic respiratory disease patients, as well as multidisciplinary intervention to keep people in the workforce and their homes as long as possible.
It also called for better prevention, mainly by tackling smoking, and more "timely and accurate" diagnosis, including routine lung health and allergy tests.
A 2014 EFA report said national health authorities could "dramatically reduce COPD deaths and costs" by making lung function (spirometry) tests compulsory in regular health check-ups.
As part of its World COPD Day campaign, the ECC - jointly with professional network the European Respiratory Society - will provide free spirometry testing at the European Commission, in Brussels, on 20 November.
It will also be displaying images of patients, healthcare workers and carers at Metro stations in the EU quarter, and at the Berlaymont building, for its awareness-raising 'Faces of COPD' campaign.
They include Pierre, who is "struggling to quit smoking" but who regularly attends a pulmonary rehabilitation session near his home in France, to help maintain his breathing capacity by performing supervised physical activity.
"We're helping putting faces to the disease because COPD remains mainly invisible to the lay population," said ECC Secretary General Catherine Hartmann.
"Despite being a severe respiratory disease that affects up to 10 percent of the European adult population [it] is largely unknown, highly underestimated and therefore under-diagnosed and under-treated, while being almost fully preventable," she added.
She said that, together with the wider EU respiratory health community, they were calling on European political leaders to: "protect their citizens and prevent the outbreak of the disease by further restricting access to tobacco as well as implementing strong policies on air quality"; support and promote further research on the disease, including social and environmental factors; put COPD into mainstream chronic disease-related European strategies, and to sustain national plans or programmes on COPD.
Setting out more extensive demands in a 'call to action', ECC says the magnitude of the "societal burden" is such that not presenting a collective and coordinated response to COPD would "likely result in increased care and treatment costs for employers, individuals and health systems, including the loss of labour productivity and reduced economic growth".