More families to challenge NHS after judge overrules decision to deny drug

A HIGH COURT judge has overruled the NHS’S decision to deny a life-changing drug to an autistic boy, in a ruling which the family’s lawyer said would lead to “scores” more patients challenging the health service.

The NHS should review its decision not to fund the drug for the seven-year-old boy, known as S, who has a rare condition which makes him intolerant to protein, Mrs Justice Andrews ruled.

His autism means he struggles to stick to the special diet which forms the standard treatment for the disease, called Phenylketonuria or PKU, so his doctors sought funding for the drug, Kuvan, which would allow him to eat a more normal diet.

But the appeal was refused by the NHS, leaving S at risk of the consequences of poorly controlled PKU, which could result in brain damage, Ian Wise QC, his lawyer, told the High Court. The judge overturned the NHS’S decision, ruling that the health service had been wrong to decide that the drug was not effective enough to be funded.

She ruled that there was “no room for a rational conclusion that Kuvan is not clinically effective or

‘High Court told doctors sought funds for Kuvan to enable child, 7, to eat more a normal diet

that the evidence of its clinical effectiveness (for the precise purposes for which it is sought to be used here) is insufficient”.

The judgment does not automatically mean that the child will receive the drug, she warned. But Peter Todd, of law firm Hodge Jones & Allen, who represented the family, said it would be “wholly extraordinary” if the NHS continued to refuse funding. He added that he expected “scores” more families to come forward to apply for the drug as a result of the judgment.

A spokesman for NHS England said: “We note that the judge accepted that NHS England had met its statutory duties under the Children Act and rejected the assertion that NHS England was acting in breach of the Human Rights Act.

“While the outcome of this case is limited to the particular circumstances of this funding request and does not have any wider implications for how NHS England makes decisions regarding the funding of treatments, we will of course take a further look at the individual funding request in question in the light of any further information provided to us.”

The funding policy for Kuvan is currently under a routine review, but an outcome is not expected “for some time”, the court heard.