A FAMILY is "over the moon" following a breakthrough deal which will make cystic fibrosis drugs available on the NHS.

Alex Darkin, aged 12, was previously denied access to the drug Orkambi despite being told she had irreparable lung damage.

Following a four-year campaign, the Darkin family are now celebrating a deal that has been reached to provide lifesaving cystic fibrosis (CF) drugs on the NHS which could help their daughter as well as thousands of sufferers.

MPs in Bury had also taken up the cause, campaigning for access to Orkambi for more than two years and leading debates in parliament over the issue.

The breakthrough follows a three-year row between Vertex Pharmaceuticals and NHS England over the cost of Orkambi.

Vertex said patients will be able to access the drugs on prescription within 30 days.

Mother Emma Darkin, from Prestwich, said: "We are all absolutely delighted. We were in Lanzarote when we heard the news; I began receiving lots of messages from friends and family. I was very emotional.

"We have had ups and downs throughout our campaign. We have never been able to look to the future before because we have known that all the medication Alex has been on previously was only treating the symptoms.

"These drugs will help children and young adults to live a longer life. Hopefully for Alex it will increase her lung function. Hopefully over time she might be able to reduce some of the medication she is currently on, and hopefully it well mean fewer hospital admissions.

"Alex was extremely happy that the deal had been reached. We are all over the moon."

St Monica's RC High School pupil Alex's lung function has dropped from more than 80 per cent in early 2018 to around the low 60 per cent mark and she now has to take a large amount of medication just to manage the condition.

Orkambi is said to slow decline in lung function — the most common cause of death for people with cystic fibrosis — by more than 40 per cent.

During their campaign, Mrs Darkin has attended protests in London and Edinburgh, gained the support of MP for Bury South, Ivan Lewis, helped to raise awareness over social media, and more. Alex also wrote to former Prime Minister Theresa May calling for action.

Their story was raised in parliament by MP Ivan Lewis in March last year after the mother and daughter attended one of his surgeries.

MP Ivan Lewis said: "I am delighted that a deal has finally been reached between Vertex and NHS England to secure access to the life changing drugs that are desperately needed by many.

"It has been a long and arduous process with many ups and downs and I would like to pay tribute to the CF community and their unrelenting dedication to ensuring that these life changing drugs are available to all. The CF campaigners, supported by myself and my parliamentary colleagues, have never wavered in their fight for access to the life-saving drugs.

"After four years of relentless campaigning, I am delighted and heartened to see patients in Bury South, and across the country, finally having access to the medicines that have the power to change their lives for the better."

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

Around 5,000 NHS patients will now have full access to Orkambi, Symkevi and Kalydeco following the agreement between Vertex and NHS England.

Bury North MP James Frith has been fighting for access to Orkambi for more than two years after meeting a Bury woman who suffers from CF.

The deal follows pressure from a cross-party group of MPs, including meetings with ministers and the bosses of NHS England, NICE and Vertex.

Mr Frith said: “I am delighted with this result, which comes after over two years of letters, meetings, interventions in parliament and protests outside by me and other MPs and dedicated cystic fibrosis campaigners.

“Access to these life-changing drugs will improve the lives of constituents in Bury and thousands of other people living with cystic fibrosis across the country.”

NHS chief executive Simon Stevens said the deal was a “long hoped-for moment”, while Health Secretary Matt Hancock said the deal was “great value for money” for the NHS.