Funding narcolepsy treatments

Narcolepsy is diagnosed in a very small proportion of the population leading to ‘orphan disease’ status and high treatment costs for some medications. One such medication is Sodium Oxybate (Xyrem) the only approved drug for the treatment of narcolepsy with cataplexy in adult patients. Xyrem is believed to offer improved symptom control for patients who have not done well on conventional treatments, however, it is not always routinely funded by Primary Care Trusts (PCTs).

Different PCTs have different policies in place to manage funding applications for drugs like Xyrem that are not routinely funded. Some PCTs may only agree to funding treatment on the grounds of ‘exceptional circumstances’. Your specialist will be aware of the policy taken by your local PCT.