Re: Prescribing sodium oxybate for narcolepsy: end the postcode lottery and apply some common sense
Zeman and Zaiwalla’s call for the ending of the irrational and inconsistent rationing of sodium oxybate for the treatment of narcolepsy should be welcomed. 1. It is of note that a recent case in the High Court, reported in the Telegraph newspaper, quoted Collins J as describing the decision by NHS England to decline funding of the 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. The judge decreed that the case was exceptional, and fell within the current policy of funding the treatment for exceptional cases. What was clear from the brief report was of the devastating effect the condition was having on the young person’s life and functioning, and the relatively small cost of the treatment that could help improve the symptoms. What is striking is that the cost of legal proceedings must have dwarfed the actual cost of supplying the drug. It was also disappointing to learn, yet again, of the post-code lottery that still exists for patients in the same country, with 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.
1. Zeman A, Zaiwalla Z. Prescribing sodium oxybate for narcolepsy. BMJ 2016;353:i2367. (08 May).
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Re: Prescribing sodium oxybate for narcolepsy: end the postcode lottery and apply some common sense
Zeman and Zaiwalla’s call for the ending of the irrational and inconsistent rationing of sodium oxybate for the treatment of narcolepsy should be welcomed. 1. It is of note that a recent case in the High Court, reported in the Telegraph newspaper, quoted Collins J as describing the decision by NHS England to decline funding of the 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. The judge decreed that the case was exceptional, and fell within the current policy of funding the treatment for exceptional cases. What was clear from the brief report was of the devastating effect the condition was having on the young person’s life and functioning, and the relatively small cost of the treatment that could help improve the symptoms. What is striking is that the cost of legal proceedings must have dwarfed the actual cost of supplying the drug. It was also disappointing to learn, yet again, of the post-code lottery that still exists for patients in the same country, with 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.
1. Zeman A, Zaiwalla Z. Prescribing sodium oxybate for narcolepsy. BMJ 2016;353:i2367. (08 May).
2. Judge overturns 'absurd' NHS decision not to treat narcoleptic 17-year-old. Telegraph 2016. http://www.telegraph.co.uk/news/2016/05/05/judge-overturns-absurd-nhs-de... (5 May) accessed 06/05/2016.
Competing interests: No competing interests