Blog post: It's only asthma, right? Wrong.

Kay Boycott shares her thoughts on the latest decision by NICE to approve mepolizumab for use in the UK

Kay BoycottIt's only asthma, right? Wrong

It’s only asthma - a quick puff of an inhaler and it goes away, right? Wrong. Asthma is a complex condition which pits thousands of people in a daily battle to breathe, and puts millions at risk from a life-threatening asthma attack. Today, we celebrate a significant victory in our long-fought battle for better treatments for severe asthma with the approval of a new drug, mepolizumab, for use on the NHS in England.

As news reached us of the drug’s approval, my mind flashed back to my early days at Asthma UK. At various events and visits to specialist asthma centres I met a range of people whose severe asthma has had a devastating impact on their daily lives.

Each of these encounters had a profound and lasting impact on me

There was the mother who needed to carry a bag full of life-saving equipment wherever she went because her asthma attacks were so frequent. She told me her young daughter, who also had asthma, never had the certainty of knowing her mummy would be there when she came home from school.

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I met another young woman who could not work and or live independently from her parents because of the severity of her asthma. She told me how she hated receiving treatment at her local hospital following an asthma attack, rather than a specialist centre, because the medical staff did not treat her condition as seriously as they should have. She described frequently sitting outside an accident and emergency department having been forcibly discharged after being told she was no longer considered an emergency. No-one believes her when she said another asthma attack that could kill her was imminent. Wearily she described how she would go back in when the second, predicted, attack came.

Perhaps more vividly than any other, I remember spending time with a lovely lady who was sadly in the last days of her many years of struggling with severe asthma. I listened in silence as she told me how gradually asthma had robbed her of everything she loved. No longer able to be a social worker; no longer physically able to do any job; no longer able to feel the intimate joy of dancing with her husband; no longer able to cross the road to the corner shop or even sleep through the night. Asthma had cruelly taken her world away.

The impact of these meetings was heightened by the knowledge that these brave and resilient people were just three of the 250,000 living with asthma that is so severe conventional treatments don’t work. It also struck me as agonisingly unfair that these people were all but invisible to the general public who see asthma as solved with a quick puff of an inhaler. Ending complacency about asthma has since been a key aim for the organisation, and we try every day to show the sad, and sometimes shocking reality of living with asthma.

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But today, we experienced a moment of hope with the approval of a new drug

We have been working behind the scenes for months for this drug to be made available, including sharing the amazing stories of people whose day-to-day lives were transformed by trialling this treatment. It has taken three attempts to finally get to this point but in the face of such overwhelming need, knowing that so many people face a daily battle to breathe, we will use all our influence to ensure this new treatment and others like it – a generation of transformative drugs in the pipeline – also get approved, despite the high costs. We will also work to ensure treatments actually reach all those people who qualify for it, without the need to jump through complicated hoops and battle bureaucracy. 

Looking forward – there is still so much more to do and we need your help

Sadly, mepolizumab and other similar drugs will not help everyone. They only target one type of severe asthma. There are tens of thousands of people out there with different forms of the condition for whom there is currently no hope of new treatments. Asthma + Lung UK must continue to push for major research investment into these other forms of severe asthma.

Ultimately, we hope all this work will one day lead to a raft of effective new targeted treatments for severe asthma that will free people to go to work, school, raise families and live unrestricted lives not overshadowed by asthma. If at this point I hear someone dismissively say “it’s only asthma – I’ve got a treatment that makes it go away”, I’ll raise a smile in the knowledge that the hard work – by all of us – has been worth it.

Read about the policy work that took place in the build up to NICE approving this new drug in a blog post by Joseph Clift, Senior Policy Officer at Asthma + Lung UK.

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