Yes, don’t have narcolepsy and remain living in the wrong post code.
Zeman and Zaiwalla’s call to end the irrational and inconsistent rationing of sodium oxybate for the treatment of narcolepsy should be welcomed.1
Of note, a recent case in the High Court, reported in the Telegraph, quoted the judge as describing the decision by NHS England to decline funding of this drug for a 17 year old girl with the condition as a “thoroughly bad decision,” “totally irrational,” and “disastrous.”2 The judge accepted the fact that her condition was deteriorating, and that this was the most effective treatment, a position that was not disputed by NHS England. He decreed that the case was exceptional and fell within the current policy of funding the treatment for such cases. The brief report made clear the devastating effect the condition had on the girl’s life and functioning, and the relatively small cost of the treatment that could have helped improve her symptoms. It is striking that the cost of legal proceedings must have dwarfed the cost of supplying the drug.
It was also disappointing to learn, yet again, of the postcode lottery that still exists for patients from the same country and who pay the same taxes. The NHS was set up to be a national service for health. Instead, it is now a series of local companies, increasingly being run for profit.