Afamelanotide for treating erythropoietic protoporphyria [ID927]: Notice of Appeal

NICE has received four appeals against the Final Evaluation Determination on the above HST evaluation from the following organisations:

  • Clinuvel UK Ltd
  • International Porphyria Patient Network
  • British Porphyria Association
  • British Association of Dermatologists

The appeal panel will convene on Monday 30 July 2018 at NICE, 10 Spring Gardens, London, SW1A 2BU to hear oral representations from the appellants. 

Members of the public, including consultees and commentators for this appraisal, and the press, may request to attend the hearing.  The number of places for observers is constrained by the venue, and priority will be given to members of the public who are not employed by the appellant.  There are twenty five places available for this appeal hearing. 

Where possible, requests to attend should be made using the form that will be available on the Institute’s website https://www.nice.org.uk/event/porphyria-afamelanotide-appeal This form will be available from 20 June 2018 only.  The website registration will allow requests to attend to be granted on a first-come, first-served basis.  The registration period for this appeal will end at 5pm on 4 July 2018.   Further details relating to public attendance at this appeal are available on the same webpage as above.

A limited number of places at the appeal hearing will be reserved for members of the public who do not have access to the internet.  These places should be applied for in writing, addressed to the Appeals Coordinator at NICE, to arrive before 5pm on 4 July 2018.  Written requests to attend will also be granted on a first-come, first-served basis.