MP Ivan Lewis is campaigning for access to a drug that could improve the quality of life for people with the genetic condition cystic fibrosis (CF).

In an adjournment debate in the House of Commons on Tuesday night, the MP for Bury South drew on the experiences of his 10-year-old constituent as he advocated for the drug Orkambi to be made available.

Cystic fibrosis is a life-shortening genetic condition that affects more than 10,400 people in the UK, including about 8,000 people in England.

Orkambi, the second precision medicine to be licensed for use in the UK by people with CF, is not currently provided by the NHS except in rare cases.

It gained European approval three years ago but was rejected by the National Institute for Health and Care Excellence (NICE) in 2016 on the grounds the cost of the treatment was too high for the benefit it offered, and is currently only available on compassionate grounds.

Vertex said that NHS England rejected its 'best offer', which was given three weeks ago, and instead responded with a counter-offer which, they said, 'did not reflect the real value of their current and future medicines'.

A letter sent to David Ramsden, chief executive of the Cystic Fibrosis Trust, by John Stewart, NHS England's director of specialised commissioning, reads: "Vertex has remained unwilling to price responsibly and take advantage of the flexibilities we have been willing to offer."

Mr Lewis has challenged the delay in negotiations between NHS England and pharmaceutical company Vertex to provide the life-changing treatment after members first demanded action four months ago.

He said: "I first became aware of Orkambi when a young constituent and her mother attended my constituency surgery.

"Emma Darkin’s daughter, Alex, is 10 years old and suffers from CF.

"Alex has to take a large amount of medication just to manage the condition. Her lung function continues to drop. Her daily life is dominated 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 three months."

A two-year negotiation has been under way between NHS England and Vertex to find a pricing and access deal for Orkambi. But these, it is understood, have stalled.

Mr Lewis called for the new Health Secretary, Matt Hancock, to convene urgent talks between the two bodies.

Vertex CEO Dr Jeff Leiden said: "Last night’s debate in the House of Commons emphasised the importance of providing rapid access to innovative medicines for cystic fibrosis.

"I welcome the call by parliamentarians for NHS England to urgently meet with me to ensure negotiations continue in a serious and meaningful way.

"I stand ready to meet at any time, any place so we can reach a swift conclusion."

Orkambi has been shown to slow decline in lung function, the most common cause of death for sufferers of CF, by 42 per cent and cut the number of infections requiring hospitalisation by 61 per cent.

Mr Lewis said: "Campaigners for Orkambi have relentlessly called for negotiations and a fair, sustainable pricing deal for Orkambi. However, after four face-to-face meetings between Vertex and NHS England, we have reached an impasse.

"People with CF have been waiting too long for access to vital new precision treatments that have been deemed effective.

"They are still waiting whilst their health and quality of life decline."