NHS ordered to rethink expensive treatment for child

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Aug 09, 2017
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Doctors’ requests to use a drug called Kuvan to treat a seven-year-old boy with a metabolic disorder have been repeatedly turned down

Lynne Cameron/PA

A judge has ordered health bosses to reconsider a decision not to fund potentially crucial treatment for a seven-year-old boy suffering from a rare condition.

Officials at NHS England had rejected a request from doctors to treat the boy with a new and expensive drug on the grounds that his case was exceptional. 

The doctors had said that the child known as A, who suffers from the metabolic condition phenylketonuria, should be treated with a drug called Kuvan which is occasionally prescribed for to treat the condition. The condition means the boy is unable to metabolise phenylalanine, which is contained in most protein-rich foods. Untreated, phenylalanine will accumulate in the blood in dangerous concentrations and can cause serious cognitive impairment as well as permanent brain injury.

Dr Saikat Santra from Birmingham Children’s Hospital, the consultant treating A, first applied to NHS England through a process known as an individual funding request. However, the funding was repeatedly refused on the grounds that A was not sufficiently exceptional. NHS England also said that the clinical effectiveness and cost effectiveness of Kuvan had not been established.

Yesterday Mrs Justice Andrews, sitting in the High Court, ruled that NHS England must reconsider the funding request. The judge said a panel’s earlier decision was a misinterpretation of the phrase “clinical effectiveness” or a misunderstanding or material mischaracterisation of the evidence. Mrs Justice Andrews went on to say that “if clinical effectiveness is properly interpreted, the evidence that Kuvan is clinically effective is overwhelming”.

The family’s legal team was led by Peter Todd, a partner at London law firm Hodge Jones & Allen. He said that while court made no mandatory order for funding, “it would be wholly extraordinary if the … panel was to, once again, find reason to not fund this life-changing drug for a child”.

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