SCENESSE® update (24 Dec 17)

NICE have published a provisional evaluation for making Scenesse available on the NHS. The evaluation follows the appraisal meeting held on 23rd Nov and is now available on the NICE website. This takes the form of an Evaluation Consultation Document (ECD).

NICE are proposing that Afamelanotide (Scenesse) is not recommended for use in England. The BPA is incredibly disappointed at this news. This recommendation is made despite acknowledgement of the enormous impact and severity of EPP.  The reasons for the decision are based largely on health economics grounds.

Please take time to read the documentation which is available at NICE – Afamelanotide Appraisal ID927. This decision is not yet final and the BPA is currently formulating an appropriate response to the document.

NICE is seeking further evidence and clarification by 24th January 2018. The evaluation committee is interested in receiving comments on the following:

  • Has all of the relevant evidence been taken into account?
  • Are the summaries of clinical effectiveness and value for money reasonable interpretations of the evidence?
  • Are the provisional recommendations sound and a suitable basis for guidance to NHS England?

In order to make sure your voice is heard please contact the BPA with any comments on the documentation in relation to the above points.

Amongst other things, we are currently seeking advice from Genetic Alliance ( an umbrella charity for many rare disease charities. They have experience in actively campaigning on issues of policy and practice to influence governments, policy makers, industry and care providers such as the NHS.

For further information on the recommendation, please also see Clinuvel’s latest press release at

In the meantime, we will continue to support EPP patients and keep members informed.