The breathless reality of COPD for patients
Millions of people are struggling with a lung disease that still receives too little attention
Elina Ikavalko suffers from the lung condition COPD, a severe respiratory disease that is under-prioritised and therefore under-funded, under-recognised and under-treated. She is one of 384 million people affected worldwide and COPD dominates her life.
“The lack of oxygen makes me very tired on a daily basis, really,” she says. “Yesterday I went out for a walk, and it was just terrible. I couldn't catch my breath at all.”
The 33-year-old cybersecurity consultant, who is originally from Finland, lives near Dublin. She was diagnosed with severe emphysema and COPD at the age of 26.
“When I moved to Ireland, I had to go through the process of getting diagnosed again since the doctors here didn’t believe I could have emphysema and COPD due to my young age.”
Short for chronic obstructive pulmonary disease, COPD is the third leading cause of death worldwide, according to the World Health Organization, resulting in 3.2m deaths in 2019. It occurs when abnormalities in the small airways of the lungs limit airflow. And while the disease is often associated with smoking, other types of environmental exposure such as indoor air pollution are also major causes.
Having COPD means that Ikavalko, along with hundreds of thousands of other people, must sometimes rely on oxygen tanks – for her daily exercise or to go on holiday. “I can't ever really get a last-minute flight because I always have to go through a special kind of protocol to get to take the oxygen machine with me.” Her doctor has also advised her on major life choices, including suggesting she does not get pregnant. “That would really put my life at risk,” she says.
Pauline Masters, a 73-year-old COPD patient from the UK who was diagnosed 18 years ago, agrees that life is “pretty challenging” with the condition. Masters used to enjoy travelling and walking but now settles for less energetic hobbies such as yoga. “I need help with the housework and some help with the small garden I’ve got,” she says. “And I have had to limit my social life quite a lot. I can't do a full day of anything. Now, half a day is the most I can manage of reasonable activity.”
These struggles are common for people with COPD, according to Susanna Palkonen, Director of the European Federation of Allergy and Airways Diseases Patients' Associations (EFA).
“Things that healthy people do in the morning like take a shower, brush your teeth, have breakfast – all of that takes more effort because of the feelings of fatigue and breathlessness,” Palkonen says. “In the beginning, it’s not that challenging but unfortunately it's a progressive disease. So little by little you will start scaling down or being slower in many things.”
There are 384 million people worldwide living with COPD.
The breathlessness especially can take a huge toll. People with COPD often avoid situations they would find difficult, such as socialising or even seeing family. “There are really tragic stories about grandparents with COPD – they don’t have the strength to hold their grandchildren in their arms,” Palkonen says.
Beyond the direct impact on health, those with COPD must also deal with certain factors that can make the condition harder to cope with than other diseases. The first is that many of their friends and family are not familiar with the condition and how serious it can be.
“Most people have some sort of basic understanding, or at least get that it affects your breathing,” Ikavalko says. “But they don't really have that deeper understanding.”
Masters notes this lack of understanding is even harder to deal with when experiencing a severe flare-up or exacerbation (a sudden and sustained worsening of symptoms). “Each time we have an exacerbation, we don't really come back to where we were before. We lose a little bit of lung function every time.”
Perhaps one of the biggest challenges that people with COPD struggle with is stigma. While several different types of environmental exposure can trigger the disease – in the developing world it is linked with indoor air pollution from cooking on open fires – in the west, COPD is still largely associated with smoking. Yet many smokers are not aware of the disease.
“It's devastating for patients to realise that stigma,” Palkonen says.
The view that people with COPD have somehow brought their ill health upon themselves can even influence the attitudes and responses from healthcare workers.
“Sometimes it gets played down as a disease. And it shouldn't – because the impact on patients, and also on the economy, is huge,” Palkonen points out. The global cost of COPD is estimated to rise to $4.8tn in 2030, which mirrors other leading causes of morbidity and mortality worldwide such as heart failure.
COPD patients can get a raw deal because the nature of their symptoms – being breathless or finding it difficult to catch their breath to speak – means it is hard for them to mobilise and represent themselves, for example to ask for better treatment and earlier diagnoses and campaign for these in ways that are common with diseases such as breast cancer.
“If you compare it to some other serious illnesses, for example heart disease, then I think we should have the same kind of visibility and resources to treat COPD,” Ikavalko says. “Access to health resources and treatment could be way better. Some people get diagnosed with COPD and they don't see a specialist, or they don't even get frequent check-ups with their lung team.”
The British Thoracic Society recommends that many COPD patients should receive a treatment called pulmonary rehabilitation, an exercise and information programme, once a year. But the reality is quite different. “I’ve only had that twice in 18 years,” says Masters.
One out of three patients who are hospitalised with flare-ups of their condition are sent home with no follow-up care. “You wouldn't send a cardiac patient home without them going on a rehabilitation course. There's no care plan. So once you're home you might have to wait three or four months for the next outpatient appointment,” Masters says. Many COPD patients question why their condition is not taken as seriously as other illnesses, particularly given the serious and often deadly consequences.
“COPD has never had the focus. When you're hearing in the media about waiting lists, it's always about surgery or about cancers or about heart disease,” she adds. “It's never about chronic respiratory conditions.” Now is the time to speak up.
Veeva ID: Z4-39727 Date of Preparation: November 2021