9/3/26

Following a full submission under the orphan equivalent medicine process, Zilucoplan will not be recommended for use within NHSScotland. 

The SMC have released a statement on their website today, which states that the company's justification of the treatment's cost in relation to its health benefits was not sufficient and in addition the company did not present a sufficiently robust economic analysis to gain acceptance by SMC. 

Myaware engaged in this process through the Patient and Clinician Engagement (PACE) meeting to ensure the patient burden was understood by the SMC. The charity also attended the committee meeting as a patient expert.

In terms of next steps, the company UCB have a three month timeline if they wish to resubmit Zilucoplan under a fast pass scheme for reassessment. It is unclear whether this will be undertaken by the company, but Myaware will maintain open communication to deliver an update on this as soon as one is available.

In the meantime, those in Scotland who are being treated with Zilucoplan will continue to be for as long as they are in agreement with their clinician.