In a judgment delivered today at the Royal Courts of Justice, Mr Justice Collins has overturned NHS England’s decision to refuse funding for a drug, Sodium Oxybate (brand name Xyrem), used to treat narcolepsy.
The Claimant, S, is a 17 year old woman with narcolepsy and cataplexy, a serious condition causing disruption to night-time sleep, excessive daytime sleepiness, hallucinations and cataplexy.
The judge recognised the clear evidence that the young woman was suffering from a particularly rare form of her condition. He was satisfied that the claimant’s position was ‘exceptional’ and at the conclusion of the hearing made an interim order that NHS England should fund the provision of the much needed drug for a three month trial.
The judge went on to recognise that anyone reading the circumstances of this case would be ‘surprised that sodium oxybate is not available for children generally’.
In conclusion, the judge added his ‘hope’ that ‘this particular problem and a case such as this will go away when the decision is reached whether sodium oxybate will be recommended and in principle available for children’
Commenting on the outcome, the Claimant’s father said “The impact of narcolepsy and cataplexy on my daughter has been devastating. She is at a critical time in her life trying to undertake important exams which will help shape her future. I am delighted to say that as a result of the Judge’s interim order that the drug be funded forthwith her condition has improved significantly.”
Peter Todd, the claimant’s solicitor is delighted with the outcome. Looking ahead, he urged NHS England to “take on board the judgment as it currently considers its policy regarding the use of Sodium Oxybate in children.”
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