Not Out Of The Dark Yet: UK’s NICE Turns Down Clinuvel’s Phototoxicity Drug Scenesse

NICE has issued a preliminary assessment in which it recommends against public funding in England for Clinuvel’s novel drug Scenesse for the ultra-rare condition, erythropoietic protoporphyria (EPP). The company says it intends to pursue reimbursement in the coming months.

Sun rays
Patients with hypersensitivity to light will need to wait a little longer for a NICE decision

The National Institute for Health and Care Excellence (NICE) has issued a draft assessment recommending that Clinuvel’s novel drug, Scenesse (afamelanotide), for preventing phototoxicity in patients with erythropoietic protoporphyria (EPP), should not be available on the National Health Service in England.

Although clinical trial results showed the product “may be effective” and there are no other treatments available for EPP, NICE said it was not clear just how effective the drug was, and that its cost-effectiveness estimates were higher than

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