This year, the Scottish Medicines Consortium (SMC) has assessed mexiletine hydrochloride (also known as Namuscla) to treat the symptoms of myotonia (when muscles relax slowly and with difficulty after they are used) in adults with non-dystrophic myotonic disorders (a group of inherited conditions that affect muscle function but do not cause wasting of the muscles).
Muscular Dystrophy UK made a patient group submission as part of the assessment process and also represented patient interests as part of the Patient and Clinician Engagement (PACE) meeting.
Last month the committee met to review the treatment. After careful consideration, the SMC decided not to recommend mexiletine hydrochloride. The committee said they felt the evidence provided by the company was not strong enough to satisfy them that it offers value for money to NHS Scotland. You can read more information about the SMC’s decision here.
We understand that there will be some patients in Scotland who are currently receiving mexiletine hydrochloride. The SMC have told us that their decision will not impact access to the treatment for those patients already receiving it, subject to the usual medicine reviews.
We are in conversations with the pharmaceutical company, Lupin, about what its next steps will be.