Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with people diagnosed with Erythropoietic Protoporphyria on the decision by NICE not to license Scenesse for availability on the NHS.

We have had no such discussions with patients with erythropoietic protoporphyria. The National Institute for Health and Care Excellence (NICE) has not yet published final guidance on the use of afamelanotide for treating erythropoietic protoporphyria. NICE’s final draft guidance, published in May 2018, is currently subject to an appeal lodged by the drug manufacturer and other bodies. The appeal is due to be heard by NICE’s appeal panel on 30 July.