(6 years, 8 months ago)
Commons ChamberThose with erythropoietic protoporphyria cannot be exposed to sunlight or even some artificial light without extremely painful and violent skin reactions. Trials of the drug Scenesse have proved life-changing for constituents such as James Rawnsley, who, for the first time, can now take his kids to school and go on holiday. The decision to make it available on the NHS will be taken soon. Please will the Minister look at it?
EPP has a devastating impact on a person’s health and quality of life, and is something that the hon. Lady has discussed with me before. We will of course take the matter seriously, and I am very happy to talk to her more about it.