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Your spotlight on local services

Calls for action on patients denied £100,000 cystic fibrosis drug


Campaigners are calling on the government to urgently intervene over the cost of a drug that could extend the lives of thousands of children but which manufacturers have set at £105,000 per patient per year, a price the NHS cannot afford.

For more than two years an emotive battle has been raging over Orkambi, which tackles the cause of  cystic fibrosis. Previously, children with the genetic disorder did not often survive to adulthood and even today, half will be dead before the age of 32. Orkambi could extend lives, but negotiations over the price the NHS should pay have been in stalemate since July, with the pharma company that makes it refusing to reduce the price.

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