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The fight for the game-changing cystic fibrosis drug, Orkambi
In just 10 days 114,000 people signed a petition demanding the government fund Orkambi, a drug for the treatment of cystic fibrosis — but the disgracefully high cost is keeping it out of the reach of the NHS, writes RUTH HUNT
Campaigners stage a protest outside Downing Street in central London, as part of a national campaign over the lack of availability of the "life-saving" cystic fibrosis drug Orkambi
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IN 2016, when the European Medicines Agency approved Orkambi — a precision drug produced by pharmaceutical company, Vertex, which would help the 50 per cent of those with cystic fibrosis who have two copies of the F508 del mutation, it gave hope to the whole community, not just for this drug, but also for drugs in the pipeline that could help as many as 90 per cent of those with cystic fibrosis.
There was no doubt Orkambi was a game-changer. It effectively slows down the deterioration in lung function by up to 42 per cent and cuts admission to hospital due to infections by up to 61 per cent.
The National Institute for Health and Care Excellence (Nice) called it “important and effective” and approved it for use among “compassionate cases” where lung function had already deteriorated below 40 per cent.
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