Asthma UK has launched a landmark report revealing the challenges faced by people with severe asthma, and how Asthma UK, scientists, researchers and people with asthma can work together to find a cure.
Here we summarise our findings and explain how we’ll find new drugs to treat people with severe asthma so they can live longer − and live better. You can also read the full report here: Slipping through the net: the reality facing patients with severe asthma.
Severe asthma ruins health, education and family lives
If you have severe asthma, you’ll know what it feels like to start your day breathless and tight-chested, with an irritating cough that won’t go away. On top of this you’ll probably recognise what it’s like to feel exhausted because of broken sleep, and in constant fear of having an asthma attack at any time − an attack so serious that you could easily end up in hospital.
Through all this, you may feel you have to remain bright and positive so your children, spouse, friends or colleagues − who may well have seen you rushed to hospital many times − don’t worry that it’s going to happen again.
This is the reality of living with severe asthma – a condition that affects 200,000 people in the UK, both adults and children. Every day these people are struggling with persistent symptoms and live in fear of having an asthma attack because current treatments don’t work. Their medicines are only just about keeping their symptoms under control.
Coping day to day
For some people, severe asthma brings good days and bad days – or good phases and bad phases.
“I have symptoms all the time, and it stops me doing a lot of things. I can’t go out for a walk during pollen season, and often I can’t even do gentle exercise. I don’t do much socialising.” – Sean Michael
Taking steroids can cause serious side effects
Although there are some exciting new treatments available to people who have been to a severe asthma clinic, the choice is limited and they are only suitable for people with certain types of severe asthma. Alongside the usual asthma medicines, you’ll be taking drugs called oral corticosteroids (steroids in tablet or liquid form) to try to keep your symptoms under control.
Oral corticosteroids reduce inflammation and swelling in the lungs – helping to prevent life-threatening asthma attacks – but if they’re taken over a long period of time, they can cause serious side effects. Unfortunately, these symptoms are experienced by 93% of severe asthma patients who take steroids long term, which is why you should read our tips about how to manage these side effects.
Not surprisingly, lots of people with severe asthma hate taking oral corticosteroids at high doses over the long term. But the choice is stark, as Nichola Duane, who has severe asthma, explains:
“Unfortunately, I have experienced side effects as a result of taking steroids for so long. The most obvious has been weight gain. My appearance changed so much that people who hadn’t seen me for a while used to comment, which affected my confidence even more. But I’ve come to realise that even though I’m getting side effects from taking steroids, my asthma medicines are keeping me out of hospital so it’s worth it.”
Nichola is not alone. Around 50,000 people with severe asthma are on the highest level of treatment – about the same number of people who can fit into Manchester City’s football stadium!
That’s far too many ruined lives. We desperately need new treatments for severe asthma and we need them fast. This is why Asthma UK is calling for new and effective treatments to be developed as quickly as possible, and we firmly believe that research will provide the answers.
Some of the long-term side effects of oral corticosteroids
Video: Why we need new medicines for severe asthmaProfessor Salman Siddiqi explains why we desperately need more medicines to treat severe asthma.
Transcript for ‘Why do we need new medicines for severe asthma?’
0:04 The existing treatments that we have really only target one form of severe asthma.
0:10 We recognise that severe asthma is not all one bundle of patients.
0:14 Patients are very unique and individual.
0:17 One of the major problems in severe asthma is that patients are often
0:21 escalated on a steroid ladder and end up on very high levels of corticosteroids which
0:27 then have to be stepped down and they get lots of side effects from that.
0:31 And if we take other models of disease like cancer, we know that cancer therapies
0:38 are really targeted to specific abnormalities at the molecular and genetic level
0:43 in tissue and severe asthma is really just starting to expand into that field.
0:49 Only five per cent of people with severe asthma are actually in a clinical trial,
0:53 whereas actually in cancer and other disease areas, this number is more like 30 to 40 per cent.
0:58 If you want to realise this ambition so that more patients with asthma have
1:01 something for them rather than nothing, we need to
1:04 become more cohesive as a community, and
1:07 foster partnerships both with European partners and transatlantic partners.
New thinking, new developments
Although the situation might sound bleak, there’s lots of cutting-edge work already going on in the search for better treatments, and ultimately a cure, for severe asthma.
This has opened the door to exploring and identifying different types of this disease, so that we can develop new ways to diagnose and treat it.
Abandoning the one-size-fits-all approach paves the way for specific medicines to be tailored to particular types of asthma. Known as ‘precision medicine’, this approach has been used successfully for some time to treat different cancers and it offers exciting opportunities for people with severe asthma.
Precision medicine will not only revolutionise treatment but transform lives.
Testing for different types of severe asthmas
Scientists are already working on the crucial task of identifying the different types of severe asthmas. With more research, certain substances present in the mucus, blood and exhaled breath of people with severe asthma could be used to test for different sub-types of the condition. These substances are known as biomarkers and are a major step forward in understanding severe asthma.
But both areas urgently need more research before they can be of any benefit. Crucially, more people with severe asthma need to be added to a national register so scientists can get them involved in research.
Making research count
It takes a lot of time and money to develop a new treatment, and it’s not unusual for drugs to fall at the final hurdle. People with severe asthma and their families are the biggest losers as they have to wait even longer for new treatments to be developed.
To reduce the risk of new asthma treatments ending up on the scrapheap, Asthma UK has worked with experts across Europe to produce a research ‘roadmap’ to highlight the best routes to take in this and other areas of asthma research.
Known as the European Asthma Research and Innovation Partnership (EARIP), it identifies the most promising areas that scientists and funders should focus on to get the best results for people with asthma.
Developing new treatments for severe asthma is one of the top priorities highlighted in this research blueprint.
Transforming lives with new treatments
As revealed by the EARIP ‘roadmap’, there are a host of opportunities to develop effective asthma treatments. But to reap these rewards we need to fast-track research now so that new drugs are developed as soon as possible.
Although the medicine cabinet is still pretty bare when it comes to treatments for severe asthma, we are seeing some very promising developments in certain areas. Asthma UK is working to ensure even more of these drugs make it to the people who need them. With your support, Asthma UK can fund even more research, so please consider making a donation.
Hope for severe allergic asthma
If you have severe allergic asthma, four new drugs called monoclonal antibodies (also known as mAbs or biologics) are providing real hope: omalizumab (Xolair), mepolizumab (Nucala), reslizumab (Cinquaero) and benralizumab (Fasenra).
This means relief from life-threatening asthma attacks for thousands of people with severe asthma, as well as fewer unpleasant side effects from oral corticosteroids. We hope that they are just the first of a new line of potentially life-saving treatments available for severe allergic asthma.
So if you have severe allergic asthma, the prospects for a healthier, symptom-free future within your lifetime are very encouraging.
Severe non-allergic asthma
Sadly, if you have severe non-allergic asthma the outlook is less rosy at present.
This is because while a lot of time and energy has been devoted to finding effective drugs for severe allergic asthma, severe non-allergic asthma has not been the focus of research, so it could be a long time before we see new treatments. This is an area where Asthma UK believes more research is urgently needed.
The potential to revolutionise treatments for people with severe asthma is huge. But the key to unlocking this potential lies in new research by top scientists. And if the 200,000 people with severe asthma are to reap the benefits of this vital research as soon as possible, we need to act now.
Asthma UK has drawn up a 12-point plan setting out what we need to do to make sure new and effective treatments are available as soon as possible. Our ultimate goal is to stop severe asthma attacks and cure severe asthma.
We are therefore calling for:
- Better treatments with fewer side effects
- More research into all the different asthmas under the ‘severe asthma’ banner
- Non-invasive tests that can accurately identify different types of severe asthma
- Treatments for types of severe asthma that don’t respond to existing treatments
- ‘Precision medicine’ that targets treatments better
- Medicines that are cost-efficient for healthcare providers, so they reach the people who would benefit from them
- A registry of people with severe asthma so we can better measure the long-term impact of treatments
- Researchers and industry to work together
- A better understanding of biomarkers and what they tell us about the different types of asthma.
- The pharmaceutical industry to work with researchers on developing new treatments for severe non-allergic asthma
- Researchers to build on the European Asthma Research Innovation Partnership research priorities to develop new treatments targeting severe non-allergic asthma
- New medicine trial designs that allow different treatments to be tested across a wider number of people.
How we can support you if you have severe asthma
Asthma UK is dedicated to supporting you every step of the way if you have severe asthma. Whether you’re just having a bad day or facing a major challenge like a recent hospitalisation, here are some of the ways we can help you, whatever you’re experiencing:
- Take a look at our advice about coping with severe asthma
- Don’t feel alone – join our friendly, supportive Facebook community
- Speak to an asthma expert nurse by calling our Helpline on 0300 222 5800 (Monday-Friday; 9am-5pm) or contacting them via WhatsApp chat on 07378 606728.
Last updated March 2019
Next review due March 2022