20 December 2017 - The National Institute for Health and Care Excellence has rejected Clinuvel UK’s afamelanotide for treating erythropoietic protoporphyria in preliminary guidelines deeming it far too expensive for NHS use.

Erythropoietic protoporphyria (EPP) is an inherited genetic disorder affecting around 500-600 people in England, which causes accumulation of chemical substances called porphyrins in the body. The primary symptom is hypersensitivity of the skin to sunlight and some types of artificial light, which leads to an often rapid and painful chemical reaction under the skin (phototoxicity).

There is currently no effective treatment for the underlying cause of EPP, or to protect against or relieve pain caused by phototoxicity.

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