NEWS COPY
A decision to deny sufferers of terminal lung disease access to a life-extending drug has been branded ‘inhuman’.
The British Lung Foundation was hoping the National Institute For Health and Clinical Excellence (NICE) would reverse their 2013 decision and allow all patients with idiopathic pulmonary fibrosis – of which there is no known cause or cure – to be prescribed pirfenidone.
But in an announcement, posted on their website on the day the General Election results emerged, NICE stuck to their guns, and shattered the hopes of the BLF and the 32,500 IPF sufferers in Britain.
That means it will still only be reserved for people with severe cases of IPF and NOT prescribed on the NHS for people in the early stages of this fatal lung condition, despite the fact it could ease their pain and make them more comfortable, and ultimately enable them to live longer.
Dr Penny Woods, Chief Executive of the BLF, said: “The decision by NICE to continue denying some IPF patients access to a life-extending drug until their disease gets worse is extremely disappointing.
“It is inhuman to require someone to slowly deteriorate and have a poorer quality of life before they can be treated - and a choice that defies all common sense.
“This is another example of where proven interventions for respiratory patients are not being prioritised.
“We need a taskforce for lung health to look at these issues across diseases, and put in place a five year strategy to improve outcomes for the 12 million people affected by lung disease in the UK.”
Consultant respiratory physician Prof. Toby Maher added: ‘’Pirfenidone is as effective with patients who are in the early stages of the disease as it is among those who are more severe.’’
‘’The drug extends life by years in patients with early disease and by weeks in advanced disease.’’
The lung disease – which kills 5,300 people every year – has a prognosis worse than many cancers, causing a build-up of scar tissue in the lungs which makes them thick and hard and less able to take in oxygen.
People living with the condition will struggle to do everyday tasks, like walking up stairs, mowing the lawn or getting dressed without feeling incredibly out of breath.
Regardless of treatment, people with IPF on average only live for around two to five years from diagnosis.
IPF is the commonest form of interstitial lung disease; a group of disorders characterised by inflammation or fibrosis of the interstitial space.
Although considered a rare disease, IPF has become more common in both the UK and the US over the last 30 years.
During the last decade the condition has been responsible for one in every 100 UK deaths.
The disease - which usually strikes those in their late 40s or early 50s - starts with sudden shortness of breath.
It is first only noticeable on exertion, but within three to five years progresses to the point most sufferers develop respiratory failure and die of suffocation.
Scientists don’t know exactly how pirfenidone works yet, but they think it slows down inflammation and the build-up of scar tissue in the lungs.
It is not handed out until sufferers have a 50-80% capacity remaining in their lungs, meaning many will be on their death beds by the time they are prescribed pirfenidone.
A statement issued by NICE said: ‘’Our appraisal committee concluded that pirfenidone could not be considered a cost-effective use of NHS resources for the full population specified in the marketing authorisation (that is, adults with mild to moderate idiopathic pulmonary fibrosis).’’
‘’NICE assesses clinical and cost-effectiveness of drugs compared to what is already available on the NHS. Our technology appraisals recommend whether a drug should be routinely funded on the NHS i.e. if patients should have automatic right to it.
‘’Where we have said no or if we haven’t looked at a drug it can still be prescribed on the NHS. In those instances local NHS bodies decide whether to provide funding for the treatment.’’
ENDS
