Is Wakix® the new Xyrem® ?
I do not ask this because of any similarities between what these two medications can do for people with narcolepsy but for other, far more frustrating reasons. Like Xyrem®, Wakix® has orphan drug status, its effects are not well understood, it is perceived as expensive and NHS adoption is slow because it is relatively new, despite the relevant NICE guidelines.
On May 23rd, 2016, I wrote the following paragraph:
It remains to be seen whether the orphan designation awarded Wakix®, combined with the manufacturer’s challenge of agreeing UK, EU and global pricing will impact on our ability as UK patients to have universal access to this medication. The very real concern is that a combination of this and the lack of understanding we see in the commissioning side of the NHS may create a barrier to access for at least some patients across the UK.
One year later, it’s becoming increasingly clear that patients are struggling to access Wakix®. If and when this happens, I need you to cross-examine your clinician, because there is no reason for it other than bureaucracy. On behalf of all of us, I am not prepared to spend the next decade of my life dealing with Individual Funding Requests (IFRs) and listening to stories of lost jobs, homes, families and relationships whilst we wait for others to take action.
If necessary we will seek legal aid for an individual and use the courts to press for access. Narcolepsy UK has been forced to take this approach in the case of Xyrem® (treatment for children, adults and continued treatment where removal of medication has been threatened) and we will not hesitate to do the same for Wakix®.
Chair, Narcolepsy UK