Mrs Justice Andrews has found the decision of NHS England to refuse to fund treatment for a 7 year-old boy with an inherited metabolic disorder, Phenylketonuria (PKU), to be irrational and unlawful. PKU is a condition which inhibits the ability to digest protein and prevents the body from breaking down an amino acid called phenylalanine. High levels of phenylalanine can cause permanent brain damage. The claimant, S, was unable to control his intake of protein due to his autism and so his consultant sought funding approval for sapropterin dihydrochloride (Kuvan) from NHS England. Kuvan is not currently approved by NHS England for funding for children although it is approved by the European Medicines Agency and is widely prescribed in countries across Europe including France and Romania. Despite the evidence that S’s phenylalanine levels were above the safe level and so putting him at risk of brain damage NHS England refused his consultant’s request for funding. In a detailed judgment which is highly critical of the approach taken by NHS England, Mrs Justice Andrews found the decision to be irrational and unlawful. The decision was quashed and now has to be retaken in light of the judgment and any further clinical evidence presented by S’s consultant.
The full judgment can be found here.