A Tadworth mum is relieved after the availability of 'life-saving' drug Orkambi is to be debated in Parliament on Monday.

Mum-of-three Sharon Cranfield has been campaigning for the drugs introduction into the NHS after her daughter, who has cystic fibrosis, was given it on compassionate grounds by the manufacturer Vertex.

Jessica, who is 16, only received the drug because she was already very ill and had lung damage, which her mother believes would have been avoided if she’d had the medication sooner.

“Imagine trying to breathe through a straw,” said Sharon. “You will always feel like you’re suffocating. That is what it’s like.”

Tweeting as NHS CF warrior mum, Sharon said: “We are a community being left behind but we will be heard. You will listen to us it’s not right that children are dying. My daughter nearly died. She still might. What if it was your child”

She added that her MP Crispin Blunt has been very supportive in advocating for Jessica and others with cystic fibrosis.

On February 28 @CrispinBlunt tweeted: “I look forward to this vital drug being available to change the lives of thousands in the UK with #cysticfibrosis. We must find a way.”

In response to overwhelming support for the petition, the government said: “We want patients to benefit from clinically and cost-effective treatments.

“We welcome the dialogue between Vertex and NHS England to agree a deal that would make Orkambi available to NHS patients.”

People with cystic fibrosis are born with the hereditary condition, which is recessive. Two parents without symptoms but who ‘carry’ the gene have a 25 per cent chance of having a baby with cystic fibrosis.

The disease causes an overproduction of mucus which damages the lungs over time. It is also difficult for people with cystic fibrosis to get adequate nutrition and diabetes is another complication.

Orkambi is manufactured by pharmaceutical company Vertex and has previously been rejected for the NHS due to problems with perceived cost-effectiveness.

A Vertex spokesman said: “We share the CF community’s sense of urgency on access to new Vertex medicines and we are committed to working with the NHS to find a sustainable funding solution.

"That is why we have proposed to the Government a bold new portfolio approach that could make our medicines available to patients as soon as possible.

“It provides budget certainty and value to the NHS − and offers fair and equal access for CF patients to precision medicines that are tailored to specific genetic mutations.”

Vertex added that they are developing medicines to treat 90 per cent of cystic fibrosis patients who will one day be eligible for treatment aimed at the underlying cause of the disease.

MP for Sutton and Cheam, Paul Scully, will be leading the debate on Monday, March 19.

He said: "Vertex who manufacture Orkambi, which is unusual because it treats the underlying causes, have been wanting the NHS to sign a new style of deal because they have got lots of different drugs coming in.

"Currently, the NHS is not playing ball because they are using an analogue system for decisions. 

"With cystic fibrosis we know exactly how many people have it, because it is genetic - you can't catch it - so I really hope the NHS look again because it has the chance of extending the lives and improving the quality of life of people with cystic fibrosis."