Taxpayers’ money is being used by the Department of Health to pay for private prescriptions for a £12,000 a year drug to treat narcolepsy, HSJ has learned.

  • Department of Health will fund private prescriptions for patients with narcolepsy as side-effect of swine flu vaccine
  • £12,000 a year drug has been denied to patients with the condition on the NHS
  • Consultants and charities concerned about “bizarre” scheme

The drug is only being prescribed to patients taking legal action because their condition was triggered by the swine flu vaccine, a DH memo reveals. Patients have been denied the same drug on the NHS.

At least 80 adults and children are understood to be seeking compensation over the vaccine’s side-effects.

The difference in policy between NHS patients and those suing the DH to the licensed drug Xyrem has sparked anger from doctors and charities.

The memo, seen by HSJ, was sent to patients and lawyers taking legal action over problems linked to the use of the swine flu vaccine Pandemrix, produced by pharmaceutical giant GlaxoSmithKline.

The DH has launched a scheme agreeing to pay the cost of private prescriptions of Xyrem for patients pursuing compensation. The scheme will be funded for two years.

Some consultants fear patients may get Xyrem prescribed privately through the “ex gratia” scheme, while others, with more severe symptoms, will be denied treatment on the NHS.

Consultant neurologist and British Sleep Society president Dr Paul Reading told HSJ the situation was “bizarre and iniquitous”. He said he feared “much more deserving” patients would be denied treatment.

“It is an unusual stance and I don’t know quite how they can officially justify it,” he added.

Another consultant who had seen the memo said the government’s approach “makes me uncomfortable”.

“I don’t think we should be doing it. If anyone at the DH accepts this is a valid treatment we should be applying it to everyone. Two people with the same clinical problems should have the same treatments,” they said.

Narcolepsy is a chronic neurological condition that affects up to 31,000 people in the UK. Symptoms can include suddenly collapsing, a condition known as cataplexy, as well as exhaustion, inability to sleep and other mental health problems.

Currently clinicians need to apply to NHS England for permission to prescribe Xyrem, which costs £12,000 a year per patient, but many requests are refused on cost grounds, consultants told HSJ.

In 2009-10 the government took the decision to protect GSK from the consequences of rapidly rolling out Pandemrix, in order to protect the public from swine flu amid fears of a large death toll.

In September 2013 a DH and Health Protection Agency funded study showed that vaccinated children were 14 times more likely to have narcolepsy than unvaccinated children.

Dr Reading said: “The current system is not fit for purpose. You have to prove that someone’s response to [Xyrem] would be exceptional when compared to someone of equal severity. It is a total catch 22 and impossible to prove.

“Over the last year I have tried numerous times [to get access] with patients who are excellent candidates for the drug, and who I know would do extremely well and be transformed by it but they have been refused.”

A DH spokesman said: “We have agreed to fund the provision of Xyrem to a small number of personal injury claimants whilst we consider their claims that they developed narcolepsy following immunisation with Pandemrix.

“This is not an NHS service and the availability of Xyrem on the NHS remains solely a matter for NHS England and clinical commissioning groups.”

NHS England has asked its paediatric neurosciences clinical reference group to undertake an evidence review of Xyrem as part of developing a draft commissioning policy.