SCENESSE® update (12 Mar 2018)

NICE is presently reviewing submissions made in response to their initial recommendation not to make Scennsse available in England via the NHS. Released in December 2017, in the format of an Evaluation Consultation Document, this initial recommendation was highly disappointing, but is not yet a final decision.

A meeting at NICE on 20th Feb 2018 saw the BPA, UK EPP patients, expert clinicians, and Clinuvel all put forward rationale for the initial recommendation to be reviewed and reversed. The BPA is grateful to all parties, along with the International Porphyria Patient Network and EPP patients throughout Europe and the rest of the world, who added highly valuable commentary to the debate. We send special thanks to the German and Swiss patient networks for both the strength and quality of responses delivered to NICE’s initial Evaluation Consultation Document.

The current timeline for further recommendations and decisions by NICE is as follows:

  • Last week of March 2018 – NICE release further recommendations to BPA and other parties involved in the evaluation process.
  • 23rd May 2018 -Final recommendation from NICE to be published.

Further details can be found on the NICE website at: NICE – Afamelanotide Appraisal ID927

A press release from Clinuvel following the initial recommendation, not the February committee meeting, is available at: Clinuvel – Investors Announcements (See article dated 21/12/2017)