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Cystic fibrosis drug scandal: It ‘gave us back our lives’

Sam Deakin, 28, was virtually housebound before being prescribed Orkambi in November 2017 and sometimes struggled to stand. She was in and out of hospital and on the list for a lung transplant. Now she has regained strength and is even able to pole dance at the gym.

The barmaid from Nottingham, said: “When I caught an infection before going on treatment it would quickly become dangerous and even life threatening.

“I would frequently be in hospital, on intravenous antibiotics and on oxygen. I stayed at home with my two dogs because I just wasn’t well enough to go out.

“Three days ago pictures came up on my phone from a year ago. I was crying and I had to sit down to make my dinner because I didn’t have the energy to stand up. Now have my fitness back. I can walk the dogs.

“It’s been a lifeline. I had no life before,” she said.

Sam wants other sufferers of the serious genetic lung disorder to get it.

But the National Institute for Health and Care Excellence has not approved Orkambi, which costs the NHS £105,000 for each patient. It is only handed out on compassionate grounds.

However, many countries in Europe including the Netherlands, Germany, Italy, Austria, France and Irish Republic, routinely prescribe the drug.

Failure by National NICE to approve it – on grounds of cost-effectiveness and lack of long-term data – has led to a bitter dispute with Orkambi-maker, Vertex.

It is estimated the drug could help thousands of UK cystic fibrosis sufferers.

But to supply Orkambi at Vertex’s price would cost the NHS about £540million a year. The NHS is offering a fifth of what Vertex is charging.

In another case, 15-year-old Joe Barnes, who was on the brink of death, has improved hugely thanks the drug.

Joe, who is doing GCSEs this year, saw his weight drop to just four and a half stone. But he has gained seven kilograms in the seven months he has been prescribed Orkambi.

His mother, Lorraine, is now campaigning for other people with the disease routinely to have the treatment.

Lorraine, from Bothamsall, Nottinghamshire, who has an older son with CF, said: “Joe is at school studying for exams. This time last year he couldn’t manage a full day he was so unwell.

“It’s vital this drug is approved for people like Joe struggling to lead a normal life – too many lives have been lost waiting.”

An NHS England spokesman said: “Vertex are an extreme outlier in both their pricing and behaviour, and understandably families are calling for this company to make Orkambi affordable and accessible.”

Many of the 10,400 UK families affected by cystic fibrosis have signed a petition calling for Vertex and the NHS to agree a deal.

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