NHS will not fund boy’s ‘life-changing’ drug

The parents of a boy with a rare genetic condition have gone to the High Court to fight the NHS’S refusal to fund a “life-changing” drug.

The seven-year-old, who can only be identified as S, has severe autism and phenylketonuria (PKU), which inhibits his ability to digest protein.

His autism affects his ability to comply with the dietary restrictions which form the standard treatment for PKU, so his doctors sought funding for a drug called Kuvan. S’s counsel, Ian Wise QC, said funding had been repeatedly refused with differing reasons given, leaving S at risk of the consequences of poorly controlled PKU, including brain damage.