BURY MPs Ivan Lewis and James Frith have called on the NHS to improve access to a drug which could significantly improve the lives of cystic fibrosis sufferers.

Speaking during a debate in Westminster Hall last week, the pair called for NHS England to engage in a 'meaningful dialogue' and reach a fair settlement for access to the drug Orkambi.

The Cystic Fibrosis Trust claim the drug has the potential to significantly improve the lives of nearly half of those living with cystic fibrosis.

Orkambi tackles the underlying genetic mutations which cause the condition, slowing the decline in lung function by over 40 per cent and reducing the need for hospitalisation by over 60 per cent.

Despite this, The National Institute for Health and Care Excellence (NICE), which determines the medicines provided by the NHS, have refused to permit use of the drug, arguing that it is too expensive.

Ivan Lewis, the MP for Bury South, cited the experience of a 10-year-old constituent who has been denied access to the drug despite being told she had irreparable lung damage.

He said he was first made aware of Orkambi after Prestwich resident Emma Darkin and her daughter Alex, who suffers from cystic fibrosis, attended one of his surgeries.

Mr Lewis told the debate that Alex's lung function had dropped from more than 80 per cent at the turn of the year to around the 54-56 per cent mark and that she now had to take a large amount of medication just to manage the condition.

He said: "Alex has physio and takes a large amount of meds just to manage the condition. She has IV antibiotics every 3 months and her daily life is very much dictated by her drug and physio regime.

"Sadly, she now has irreparable lung damage.

"Recently her consultant advised that they are running out of options with regards to the medication and explained that if Alex was a year older, her parents would be able to apply for Orkambi on compassionate grounds as her lung function has deteriorated more than 25 per cent in less than 3 months.

"Emma and Alex contacted me because they can't afford to wait another year to get this drug under compassionate grounds."

Ms Darkin added: “It is extremely frustrating that Alex has spent her entire life fighting to stay well and now she is fighting for a drug that could help her feel better. She has a real love for life and all she wants to do is live a long and happy life without having to fight to breathe.”

More than 10,000 people in the UK suffer from cystic fibrosis, with more than 400 in Greater Manchester.

Bury North MP James Frith pledged his support to the campaign last year after meeting the husband of a Bury woman suffering from cystic fibrosis.

He highlighted her case during the debate and called on the government to consider the case for a commissioning body for rare diseases, such as cystic fibrosis.

Mr Frith then called on the drug provider, Vertex, to come to the table with a realistic price offer and for NHS England and NICE to take account of the impact this drug will have on the quality of life of people who are living with cystic fibrosis.