Somerset teenager to be denied pioneering drug that's changed her life
A teenager from Somerset says she thinks it's "sad and wrong" that the Cystic Fibrosis treatment she's been trialling won't be made available on the NHS.>Clara Mann from Axbridge says the drug has changed her life, but it will now be taken away because, at £100,000 a year, it's too expensive for the health service to pay for.
To look at her, as she practices for her Grade 8 piano exam, you might not think there's anything wrong with 14 year old Clara Mann. But she has Cystic Fibrosis, a disease which affects the lungs and digestion, leaving her weak and prone to recurring chest infections.
There's no cure - but for the past two years she's been taking part in trials of a new drug - with extraordinary results.
However, NICE, the body which decides whether drugs will be funded by the NHS, has concluded that the benefits of Orkambi don't justify its cost - so it won't be made available.
But the National Institute for Health and Care Excellence say the cost is too high "for the benefits it offers".