Life extending drug for sufferers of lung-scarring disease will finally be available on the NHS
For the first time, patients with ravaged lungs often caused by arthritis or breathing in asbestos will be entitled to a life-extending medicine previously denied them by the NHS.
A successful campaign against the ‘inhuman restrictions’ placed on the drugs – antifibrotics – mean those with pulmonary fibrosis caused by asbestos inhalation will be among more than 15,000 Britons with the disease who will now have the chance to extend their life by two years or more.
The disease scars the lungs and leads to respiratory failure, but drugs which slow its progression have previously been accessible mainly for patients who develop it in old age.
Sufferers whose illness has been triggered by other conditions, such as rheumatoid arthritis or asbestosis caused by exposure to toxic building insulation, were barred due to a lack of trial data.
Many desperate people instead turned to the internet, with some spending as much as £3,000 a year on antifibrotics.
Carol Fielding, 66, a former NHS nurse from Bolton who developed pulmonary fibrosis in 2018, said: ‘I was told because it was brought on by rheumatoid arthritis I didn’t meet the criteria for the drugs.
‘I was shocked, angry and upset all at the same time. I didn’t understand how we could be treated like this.
‘I’ve been buying the pills from India since August and already I can feel a difference.
‘I’m coughing less and I can breathe easier.
‘But it’s a scandal that people in my condition have had to go out and buy these expensive drugs.’
Last week, after a five-year review, the NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), agreed that patients such as Carol could access antifibrotics.
Professor Gisli Jenkins, a respiratory expert at Imperial College London, called the move ‘an absolute game changer’.
He said: ‘This remorseless condition has a worse mortality rate than most cancers, with next to no hope of remission, and yet there have been few, if any, treatment options for patients.
‘Allowing these patients to finally access antifibrotics will allow them to live longer and healthier lives.’
More than 70,000 Britons are currently living with pulmonary fibrosis, with the majority of them suffering from a version called idiopathic pulmonary fibrosis (IPF).
Most are over 70, and doctors are not sure what causes it – idiopathic is a medical term for unknown cause.
There is also no cure and patients will usually live no longer than five years after diagnosis.
Over the past decade, antifibrotic drugs, such as nintedanib, were developed and shown to be highly effective at slowing the spread of the scarring in the lungs.
For this reason, NICE granted IPF patients access to the drugs.
However, pulmonary fibrosis also develops as a result of known causes – a version known as non-IPF.
Triggers include rheumatoid arthritis, an autoimmune disease which can inflame and scar tissue in the lungs, exposure to the industrial materials asbestos and silica dust as well as farmer’s lung, an allergic reaction to mould in certain crops.
These non-IPF patients were not offered antifibrotics on the NHS because drug trials had not included them, so there was no data to show whether they responded well to the treatment.
However, campaigners have long argued that the drugs are equally effective, and point out that the UK is an outlier on the issue.
Steve Jones, chairman of Action For Pulmonary Fibrosis, said: ‘Britain is the only country in the world where access to antifibrotics is restricted to only certain pulmonary fibrosis patients.’
In 2017, the German pharmaceutical firm Boehringer Ingelheim began a trial of nintedanib for non-IPF patients.
Two years later it concluded the drug to be equally as effective at slowing the spread of scarring in the lungs as it was for patients with IPF.
The NICE review concluded there was now enough evidence to offer nintedanib to non-IPF patients on the NHS, provided scans show their lung capacity has been impacted by the disease but not so seriously that they are beyond treatment.
Ms Fielding said the decision was ‘fabulous news’.
The grandmother-of-seven, who takes nintedanib every day, said: ‘Before I started on the drugs I worried I wouldn’t see my youngest grandson reach five.
‘Now I hope I’ll be around long enough for them to remember me when they’re grown up.’
John Flanagan, Support Officer for the Group said “The is very welcome news for all sufferers of pulmonary fibrosis and in particular patients with asbestosis who will be delighted that after many years this antifibrotic drug being available to patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF, fibrosis with a an unknown cause); they too can now receive the treatment on the NHS.