The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail.
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Brineura is currently being offered under a special funding programme to 40 children in the UK. But at more than £500,000 a year, the National Institute of Health and Care Excellence has already said it is not affordable.
Families have been warned there is now no guarantee their children can continue with the treatment, which appears to stablise the condition.
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