NICE Highly Specialised Technology workshop reviews SCENESSE®

23 March 2016

NICE’s technical team invited stakeholders with an interest in the treatment of erythropoietic protoporphyria (EPP)

Executive summary

  • SCENESSE® evaluated as part of the Highly Specialised Technologies Programme (HST) in UK
  • HST Programme review of relatively high cost – low volume technology
  • Evaluation of the drug as an innovative therapy for unmet clinical need in a rare disorder
  • SCENESSE® to be available in trained and accredited expert EPP centres in the UK
  • EPP patients acknowledged to be impaired due to light deprivation and isolation

Clinuvel Pharmaceuticals Limited (ASX: CUV; XETRA-DAX: UR9; ADR: CLVLY) today announced that the National Institute for Health and Care Excellence (NICE) has held a public workshop to scope the benefits and costs of SCENESSE® (afamelanotide 16mg) in the treatment of adult patients with the rare disorder erythropoietic protoporphyria (EPP).1 This workshop is one of the last steps prior to national commissioning of the treatment by the National Health Service (NHS) England.

The company was invited, alongside representatives of the EPP patient community and clinical experts and scientists to discuss the benefits of Clinuvel’s drug SCENESSE® and its characterisation as a Highly Specialised Technology (HST) in England. The meeting included a review of the specific burden of EPP (on patients’ lives), the number of treatment centres in the UK, patients eligible for treatment, and the lack of a standard of care.

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