Families desperate for cystic fibrosis drug are importing a cheaper version ...

British families desperate to get medicine for their children with cystic fibrosis have taken inspiration from the 2013 movie, Dallas Buyers Club.

Orkambi works by regulating the balance of salt and water in the lungs of cystic fibrosis patients, whose lungs gradually fill with mucous.

Although approved for use in the UK, therefore legal to use, the drug is not available on the NHS because it's so expensive.

Left with no alternative while the US manufacturer and NHS lock horns in a price war, parents have resorted to importing medication from Argentina. 

They have banded together to ship a generic version of the drug over from South America, which is thought to be more than 80 per cent cheaper.

The turn of events echoes the Oscar-winning film in which Matthew McConaughey played an HIV patient who smuggled drugs into the US to help himself and others with the disease.

Shiloh Howells, nine, has cystic fibrosis and her lungs have about 60 per cent function and are so fragile she is expected to need a double lung transplant by the time she turns 12. Her mother said it is 'heartbreaking' to know Orkambi exists but she can't get it on the NHS

Shiloh Howells, nine, has cystic fibrosis and her lungs have about 60 per cent function and are so fragile she is expected to need a double lung transplant by the time she turns 12. Her mother said it is 'heartbreaking' to know Orkambi exists but she can't get it on the NHS

'There can be no more time waiting for those sides to reach an agreement,' one mother, Christina Walker, told BBC Newsnight.

'My son has lost 20 per cent of his lung function in one year. He needs treatment soon.'

Orkambi's manufacturer, Vertex, lists the drug as costing £104,000 per person per year, although it is believed to be offered to the NHS at a lower price.

The English health service has offered Vertex £500million for a five-year supply for the nation but was turned down by the Boston-based firm.

The NHS in Scotland is closer to reaching an agreement to access the drug through an individual application scheme, but negotiations have stalled in the rest of the UK. 

Now the buyers' club, which meets in East London, is negotiating with Argentinian firm Gador, which makes another version of the same medicine.

Parents in the UK have taken inspiration from Dallas Buyers Club, in which Matthew McConaughey plays Ron Woodrof, a man who is diagnosed with HIV and begins smuggling medication into the US and selling it to other people with the infection

Parents in the UK have taken inspiration from Dallas Buyers Club, in which Matthew McConaughey plays Ron Woodrof, a man who is diagnosed with HIV and begins smuggling medication into the US and selling it to other people with the infection

'PATIENTS SHOULD BE GIVEN ORKAMBI AS SOON AS POSSIBLE'

Shiloh Howells, nine, has cystic fibrosis (CF) and her lungs are so fragile she is expected to need a double lung transplant by the age of 12.

Doctors say her condition is far worse than many CF patients her age, and she has already had surgery to remove part of her right lung.

Her mother, Nichola, 40, said just knowing Orkambi exists but is out of reach is heartbreaking, considering it could preserve what lung function Shiloh has left.

'Her condition isn't stable and it's frightening,' Ms Howells said. 

'If she had that drug, within a year who knows what an improvement it would make.

'It's soul destroying for us. It's money and finance over a life. We are angry and frustrated.'

In March 2018, Shiloh met then-Health Secretary Jeremy Hunt at Great Ormond Street Hospital

In March 2018, Shiloh met then-Health Secretary Jeremy Hunt at Great Ormond Street Hospital

Shiloh now goes to Great Ormond Street Hospital every two months for antibiotic and IV treatment.

During Shiloh's longest stay, aged eight, she stayed for three months when her lung function dropped to 36 per cent.

Her baseline lung function is 60 per cent, but it used to sit around the 75 per cent mark. 

Ms Howells added: 'Her lungs are already very delicate. To prevent other stories like hers, patients should be given Orkambi as early as possible.

'CF is all about prevention. We are forever throwing medication at the sufferers to try and make them as comfortable as we can. But Orkambi

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