• NHS England has until tomorrow to decide whether to fund narcolepsy treatment for teenager
  • 194 patients have already received NHS funding for Xyrem
  • Lawyers claim the refusal to fund the drug is discriminatory and unlawful

NHS England has until tomorrow to decide whether to fund for a teenager a narcolepsy drug already available to hundreds of NHS patients, or face a judicial review in the high court.

High court judge Mr Justice Collins has granted permission for a judicial review of NHS England’s decision to reject the teenager’s funding application for sodium oxybate, marketed as Xyrem, at a cost of up to £13,000 a year.

The case follows previous decisions by the NHS to fund the drug, as well as a scheme set up by the Department of Health, revealed by HSJ earlier this year, to use taxpayers’ money to fund Xyrem for people whose narcolepsy was caused by the swine flu vaccine Pandemrix.

In a bid to head off a feared pandemic in 2009-10, the government agreed to cover the risk of rushing out the vaccine, produced by GlaxoSmithKline.

This “ex gratia” scheme was criticised as “bizarre and iniquitous” by consultants as it meant some patients who have had narcolepsy since birth being refused treatment while other patients would be given treatment funded by public money.

During the court case NHS England said at least 194 adult patients were currently receiving NHS funding for sodium oxybate. The judge said it was “arguable” that NHS England’s commissioning policy was wrong and unlawful and that it was potentially discriminatory that the teenager was being denied the drug while other patients were not.

Lawyers for the 16-year-old say the condition is causing severe disruption to her sleep, leading to fatigue, hallucinations and cataplexy, which can cause collapse without warning.

Despite trying a number of medications none has proven effective and specialists recommended she be prescribed Xyrem.

NHS England refused an application in May this year on the basis that the teenager was representative of a group of similar patients so the request did not meet the test of exceptionality used for individual requests.

The patient’s lawyer, Peter Todd, partner at Hodge, Jones and Allen, said he believed the decision was potentially discriminatory as other patients were receiving the drug.

Mr Todd said: “I am currently acting for 85 clients with narcolepsy and cataplexy caused by the Pandemrix vaccine… At least 10 per cent of these clients have previously been prescribed sodium oxybate under NHS funding. Given that an estimated 31,000 people suffer from narcolepsy in the UK, it is not unreasonable to estimate that hundreds, if not a thousand, patients have already received NHS funding for sodium oxybate.”

Matt O’Neill, chair of Narcolepsy UK, said: “I am personally aware of a couple of hundred people, both adults and children, who have received NHS funding for sodium oxybate in the last couple of years. NHS funding for sodium oxybate is primarily dependent on geography and specific sleep centres; some sleep centres can provide it and some can’t.

“There are cases where patients who live in one region of England have been refused local NHS funding for sodium oxybate but are subsequently referred to a different NHS region where they then receive funding. It is an extremely arbitrary process to obtain the treatment.”