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NHS England agrees to fund life-changing treatment for seven-year old boy

NHS England has reversed its controversial decision to not fund the life-changing drug, Kuvan, for a seven-year old boy – Child S.

The decision comes after the Honourable Mrs Justice Andrews DBE ordered NHS England to consider afresh the application for funding by S’s treating NHS Consultant. In her ruling at the High Court last month, Judge Andrews stated that the individual funding requests (IFR) panel’s earlier decision to ‘decline this application on the basis that the clinical effectiveness of this drug/intervention had not been demonstrated’, was a misinterpretation of the phrase “clinical effectiveness” or a misunderstanding or material mischaracterisation of the evidence.

Judge Andrews went on to say that: “If “clinical effectiveness” is properly interpreted, the evidence that Kuvan is clinically effective is overwhelming.”, and as such found in favour of S, in quashing the decision as irrational.

Peter Todd , partner in personal injury team, who represented S’s family said: “It is fantastic to hear that NHS England has reversed their previous decisions and accepted that S’s exceptional circumstances warrant the funding for Kuvan. It has been a long fight for this family who have at times felt increasingly disillusioned with NHS England’s constantly changing reasons for not providing the funding. It is a relief that the panel has now finally taken the decision which they have been waiting for.”

S’s father added: “We are pleased that NHS England has reconsidered their decision and will now fund Kuvan for our son. It’s been a very difficult two years for our whole family while we fought for what we felt was right, and we are now looking forward to a brighter future with our son and for him to enjoy a significantly improved quality of life.”

Eric Lange, Chairman of the national patient charity NSPKU said: “I am relieved that the NHS has conceded that it should provide Kuvan treatment for this young boy with PKU. His family should never have been made to fight the NHS through the court to obtain a treatment to keep their child safe. Kuvan is an established treatment widely used around the world and it is time that the NHS provided it for other patients in the UK.”

The boy, who is subject to an anonymity order and is known as “S”, has a genetic and rare metabolic condition phenylketonuria (“PKU”), which means he is unable to metabolise phenylalanine, a substance contained in most foods. Untreated, phenylalanine will accumulate in blood in dangerous concentrations and can cause serious cognitive impairment and/or permanent brain injury.

Dr Santra from Birmingham Children’s Hospital, the NHS Consultant with responsibility for treating S’s PKU, first applied to NHS England by an IFR for funding for S for a drug known as ‘Kuvan’ on the grounds his case was “exceptional”. Kuvan is a treatment which is not routinely commissioned for PKU, but can help certain patients metabolise phenylalanine, reducing the danger to themselves and enabling them to lead a more normal life.

This, and further requests for funding were repeatedly refused on the grounds that S was not sufficiently exceptional to warrant funding, and subsequently on the grounds that the clinical effectiveness and cost effectiveness of Kuvan had not been established.

PKU is generally managed through dietary restrictions limiting proteins to restrict intake of phenylalanine supplemented with protein replacements to ensure development and growth is maintained.

Though most patients with PKU are able to manage their diet to avoid protein rich food, S also has autism. His autism is at the severe end of the spectrum, and he is currently non-verbal. Helping S to control his diet to ensure he ingests enough of his protein replacement has been extremely difficult. Due to the sensory needs inherent to his autism, S often rejects supplements and will only accept foods with a high protein content, rejecting substitutes leading to heightened levels of phenylalanine (a protein) in his blood representing a significant risk of serious injury to S.

The court had heard how in the preceding 12 months, about 60% of S’s blood tests indicated his phenylalanine was outside the target range – despite huge efforts to help S to manage his condition by his parents and school.


For further information, please contact Lizzie Hannaway on 020 3567 1208 or at

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