NHS deny access to Wakix®

14th September 2017

NHS Northern Treatment Advisory Group seeks to deny access to Wakix® in error filled evidence summary

Back in 2009, what was then called the North East Treatment Advisory Group published a damning paper on the sodium oxybate product Xyrem®, choosing to associate it with with date rape and rave drugs. Ever since the publication of that report, people across the UK have had access to LICENCED medication refused by their local CCG, often based on and quoting references to this paper.

Previously North East Treatment Advisory Group (NETAG) (2009 paper) http://ntag.nhs.uk/docs/app/Sodium%20Oxybate%20(Xyrem)%20NETAG-Appraisal-Report.pdf

Following a successful Legal Review and NHS policy creation in 2016, we now have a Paediatric policy for sodium oxybate Xyrem® in NHS England but still face issues in Wales and Scotland and Northern Ireland as the supplier UCB Pharma has still not re-visited the lack of authorisation in these NHS areas, despite full awareness of the issue.

As you will see from the below papers, the NETAG, now Northern Treatment Advisory Group (NTAG) has issued a revised policy for sodium-oxybate limiting its approval to “Recommended for continuation of treatment only, if benefited as a child”. Rather unhelpfully, they have also left in the references to “Date-rape & rave drug”, presumably because they now think these are acceptable uses for children but are not yet willing to recommend the drug for use by adults unless they have “benefited as a child”.

As things stand currently, sodium oxybate, Xyrem® is still not available to all adults in England or the UK.

NHS Northern Treatment Advisory Group (2014 onwards) http://ntag.nhs.uk/docs/app/Sodium-oxybate-NTAG-Appraisal.pdf

What concerns us even more is that this same group has undertaken a review of Pitolisant (Wakix®) which has already been subject to a NICE Evidence Summary. This NTAG Appraisal Summary evidences both a lack of understanding of narcolepsy and a fairly blatant, if not clearly expressed, financial bias towards cost implications if it were to be prescribed.

At Narcolepsy UK, we are used to being treated this way but that does not make acceptable and we will not tolerate this type of misguided, biased & erroneous work being touted by those who seek to deny us access to licensed medications in favour of cheap, off-label and potentially harmful substitutes. We are extremely disappointed that this summary contains so many factual errors and that, yet again, NTAG have sought to deny us a medicine and do not recommend the use of Pitolisant (Wakix®).


The position taken by NTAG on this issue is currently under challenge by both prescribing clinicians and the supplier and Narcolepsy UK are actively involved in this ongoing dialogue.

To date, continuation of treatment for the c. 70 patients currently in receipt of Pitolisant (Wakix®) via centres in the North-East of England has been assured and we expect this to continue.