PKU funding battle: Family wins High Court challenge

Wednesday 9 August 2017

R (on the application of SB) v NHS England [2017] EWHC 2000 (Admin), 08 August 2017 The family of a seven-year-old boy whose condition could cause brain damage have won a Judicial Review challenge over an NHS decision not to fund provision of a drug called Kuvan.

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SB, R (on the application) v NHS England [2017] EWHC 2000 (Admin), 8 August 2017

The family of a seven-year-old boy whose condition could cause brain damage have won a Judicial Review challenge over an NHS decision not to fund provision of a drug called Kuvan.

The child, "S", has a rare condition phenylketonuria (PKU) which means he cannot break down an amino acid. S is autistic, which makes controlling his diet difficult.

The parents of the boy want a drug called Kuvan to help him metabolise protein, which would cost about £100 a day. If the boy ate normally, protein would accumulate in his blood in dangerous concentrations.

Mrs Justice Andrews allowed the claim for judicial review of the decision, quashed the funding decision and sent it for reconsideration by NHS England.

However, Mrs Justice Andrews said:

"Whilst this judgment is bound to give rise to a degree of optimism, I must caution against raising hopes too high. The fact that this claim for judicial review has succeeded does not mean that there will necessarily be a favourable outcome to this IFR (individual funding request) application."

The judgment is available: R (on the application of SB) v NHS England [2017] EWHC 2000 (Admin), 08 August 2017

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