Tackling the growing burden of chronic obstructive pulmonary disease in the UK

Iona Everson from PMGroup spoke to John Forni, Country Medical Director at Sanofi UK & Ireland, about the escalating challenges of treating chronic obstructive pulmonary disease (COPD) in the UK and how the government, NHS and industry can work together to tackle this

Iona Everson (IE): In the UK, 1.4 million people have a confirmed diagnosis of COPD. What are the factors that contribute to an increased risk of developing COPD?
John Forni (JF): COPD usually develops due to long-term damage to the lungs, mainly from breathing in harmful substances. It starts to affect adults from middle age onwards, with 90% of cases thought to be caused, at least primarily, by cigarette smoke. Around 20% of cases are due to occupational exposures to noxious substances, and it can also be exacerbated by environmental pollutants. This manifests and translates into some very physically disabling or debilitating conditions, which cause a number of symptoms. The symptom that is quoted most frequently is the concept of progressive breathlessness, which COPD patients say makes them feel like they are suffocating or drowning. The condition can also be associated with weight loss and fatigue, and can have a significant effect on patients’ mental health, especially when the condition progresses to the moderate-to-severe stages and patients can become housebound.

IE: It is thought that as many as two million people in the UK could be living with undiagnosed COPD. What is causing these lower diagnosis rates and how are patient outcomes affected by a later diagnosis?
JF: COPD is a complex condition with a high degree of heterogeneity, which means that there aren’t any individual symptoms that enable clinicians to make an easy diagnosis. A lot of people living with COPD are initially seen by their GPs, but not everyone has the equipment to diagnose the condition. Making the right diagnosis requires a number of tests and availability varies across the country, making a clear diagnosis of COPD quite difficult. It’s important to highlight that 23% of people who responded to a survey from Asthma + Lung UK, which is our national charity for lung health and respiratory conditions, said they had received a misdiagnosis of COPD. This means that patients may receive the wrong treatment, or may not be offered the right treatment.

‘We have made great progress in primary and secondary prevention of heart attacks – now we need to give that same due diligence to COPD’

It is also important to note that COPD is highly prevalent in those with lower socio-economic status and is a condition that is associated with a significant amount of stigma. There is both societal and institutional stigma because the condition is driven by smoking, something that is seen as taboo these days. Stigma of any kind has a significant impact on individuals and, added to that, there is the under-recognised factor of self-stigma. Some people living with COPD will think that the condition is their fault because they have smoked for a long time, but that is neither fair nor helpful.

I recently spoke to a couple who were both living with COPD and they described an experience they had at a social event for dinner. One of them had what we’d call a ‘classic smoker’s cough’, so decided to leave the restaurant to get some fresh air and get the cough under control. As they were walking outside, they said they were getting looks from people in the restaurant that made them feel embarrassed and ashamed, and reluctant to attend other social occasions. If patients then start to lose their social network and spend the majority of their time at home, not walking and mobilising, their physical activity declines. In addition, decreased social engagement leads to a decline in mental health, and so the downward spiral continues.

This is why it’s so important that we move away from stigmatising any medical condition and work to ensure that people feel they can access a healthcare system that is not going to judge them. If we are going to get to a place where we can diagnose earlier, treat earlier and offer people living with this condition the best possible care, the stigmas attached to COPD must be addressed.

IE: Is there a high likelihood of developing COPD if someone has smoked for a significant length of time?
JF: If you smoke for a long period of time, it will damage your lungs and airways, so long-term smokers are significantly more likely to develop COPD than people who have not smoked at all. Some people who smoke may never develop COPD, but I would say that they are in the minority. There will be other exacerbating factors, such as if you live in a very big city with high levels of noxious air pollution, but the vast majority of cases are driven by smoking.

IE: Can COPD exacerbations be triggered by poor air quality?
JF: It can be quite difficult to quantify, but I think it is clear that poor air quality is more likely to cause exacerbations. COPD aside, air quality is important because it can lead to respiratory conditions and this is a big concern for cities like London and Manchester. If you overlay that on someone who already has an underlying issue due to long-term smoking, then you can see how that will clearly increase COPD exacerbation rates.

IE: How will Sanofi’s new report, Breathe Equal: Policy Recommendations to Reduce the Burden of COPD, help to improve current COPD diagnosis rates and care?
JF: The report places a spotlight on COPD. It is based on insights gathered from expert clinicians throughout the UK as part of a COPD roadshow that Sanofi funded and partnered with Asthma + Lung UK on. We chose a number of areas throughout the country
after looking at the prevalence of COPD and factors like social deprivation indices.
We went to Southampton, Manchester, Hull, London, Newcastle and Leicester, and invited clinicians from each area. We were delighted that Asthma + Lung UK attended a number of the sessions to speak about the role of policy change. We heard from over 100 clinicians at these meetings, who shared their different experiences and highlighted the key statistics and important data from their areas, increasing awareness of developing areas of excellence and enabling the clinicians to share best practice.

Raising the profile of a condition like COPD in a way that it has not been done previously automatically increases its visibility and, in line with this, we also purposely badged a bus with COPD and drove it up and down the country. While that may not seem that significant, it certainly garnered attention – people were coming to these hotspots asking what COPD is and saying that they had never heard of it before, and were also tooting their horns and waving when we drove past.

What we are aiming for is an opportunity to shine a spotlight on COPD, give it the significance and relevance it deserves as the third largest cause of death in the UK and the second highest cause of hospital admissions, and firmly place it on the political agenda. I think there is a real opportunity now to get this front and centre with a new government that is looking to reduce inequities in health and social care.

The report outlines three key areas that we believe the government and NHS can focus on to improve diagnosis and care. Firstly, as I mentioned at the start, availability and access to diagnostics is not standardised and there is definitely disparity across the UK. We need to identify those who are most at risk of COPD, test them earlier and get the diagnosis right the first time, so we can ensure that patients get the right treatment. Secondly, there are also a number of things that are available to help people living with COPD, including engaging with smoking cessation if they are still smoking, and pulmonary rehabilitation to help them cope with breathlessness. Self-management and any other practical preventative measures are really important as well. Thirdly, we know the NHS is under lots of pressure, but we need to make sure that patients have ready access to specialists who can confirm their diagnosis and offer them the best treatment plans possible.

IE: You mentioned that you have been working closely with Asthma + Lung UK. Do people with asthma have an increased likelihood of developing COPD?
JF: The short answer is no. The causes of asthma and COPD are different, and this is worth highlighting because they are not always clear-cut. Asthma is reversible as a condition overall, while COPD is irreversible and there is a stage-wise decline in the capacity of the lungs as patients experience more exacerbations. If you have a hospital admission caused by a COPD exacerbation, the time between that and your next admission to hospital is shorter, and it gets shorter each time. When you have a heart attack, you lose muscle and there is a very clear visual of that muscle going dark. A lung attack of this nature is the same – you lose lung capacity and you cannot get it back.

IE: What is the treatment plan when someone has a hospital admission for COPD?
JF: If you go to A&E with a COPD exacerbation, you are given a set of treatments that is relatively standardised across the board. It’s what happens after that acute admission that is important, and that does vary across the UK. It depends on whether the Trust itself has an algorithm that enables patients who have a COPD diagnosis to get referred directly to its respiratory service. Even with that in mind, not everyone will return to access that secondary care.

‘We need to shine a spotlight on COPD and inform people that it is the third largest cause of death in the UK and the second highest cause of hospital admissions’

As part of our healthcare transformation, when we look at care closer to home, especially for A&E admissions for COPD exacerbations, it is important to consider that not everyone is able to make their appointments and travel from their home to a secondary centre. This is why, when we look at service design, it is so important to ensure that we have diagnostics and services available in the areas where people live – especially, for example, for patients who may be on home oxygen.

IE: Does the NHS have the capacity to provide people with COPD treatment for mental health issues?
JF: This is where collaboration between patient organisations, the NHS and industry is key. The NHS is a wonderful organisation, and our doctors, nurses and allied healthcare professionals (HCPs) do an incredible job in a very difficult system, but it is not always possible to solve every problem. Partnering with industry can help find solutions, and partnering with charities such as Asthma + Lung UK can provide supportive services. To address these issues, we need to use this integrated approach, where everyone is working together rather than in silos. That kind of collaboration will be key in helping to drive improvement for people living with COPD, and many other conditions as well.

IE: Can COPD shorten life expectancy?
JF: It definitely can shorten a patient’s life expectancy but unfortunately, people are not aware of the severity of acute exacerbations and hospitalisation in the same way as they are when someone says they have had a heart attack, as everyone knows what that means.
It’s important for people to understand that having an acute exacerbation when you are hospitalised is the lung equivalent to having a heart attack. That is how serious it is. We have made great progress in primary and secondary prevention of heart attacks – now we need to give that same due diligence to COPD.

IE: After being diagnosed with COPD, what steps can people take to help prevent an exacerbation that requires hospitalisation?
JF: Without question, the most important thing is smoking cessation – that it is the primary driver. We also have to appreciate that smoking cessation is not easy – it is an addiction, so we have to factor that into the discussion. Keeping active and fit is also important. We did a ‘Let’s Dance’ roadshow recently with a bespoke programme developed by HCPs to encourage people who are living with COPD to get active again. A lot of patients are of a certain age, and dancing is perhaps one of the things that they did when they were growing up, so getting them back into something like that is really important.

There are a lot of things we can do to help people living with COPD, including understanding the significant impact of self-stigma and isolation. Addressing that and ensuring that we get people mobile, even if it is just doing exercises in a chair, can increase their heart rate and physical capacity and help to improve their quality of life.

IE: What has new data revealed about the impact of COPD in the UK and what role does the government, NHS and industry play in tackling the challenges of COPD?
JF: One of the key things is looking at the service pathway. As I mentioned, people with COPD are often not that mobile and are not always able to get to a secondary care institution, unless they live very close to it. We need to look at how we can optimise a pathway in a new era to ensure that not only is care close to home, but that it includes the right diagnostic equipment and specialist care.

IE: How would a National Respiratory Health Action Plan improve COPD patient outcomes?
JF: The key is that it needs to be a national policy initiative. Once something becomes a national priority initiative, it is a prioritised, focused area, and sets a level of expectation of delivery and treatment for patients. It is a clear framework for everyone to coalesce around and say, “This is the national policy, these are the expectations – how do we come together to ensure that we deliver that?” That is why we are calling for a national action plan that would improve patient outcomes and reduce pressure on the NHS.

Iona Everson is Group Managing Editor and Emily Kimber is Deputy Editor, both at PMGroup