This week I questioned the Health Minister, Steve Brine MP, on the future availability of a life-changing drug for those with erythropoietic protoporphyria (EPP).
EPP is a rare condition where exposure to any visible light, including sunlight and artificial light causes reactions in the blood resulting in extreme skin pain. Currently there is no existing treatment or pain relief for the condition available in the UK but a new drug called Afamelanotide (Scenesse) has proved life-changing for those involved in the trial.
I spoke on behalf of my constituent James who was involved in the trial and described the drug as “taking away the pain and torture, allowing a person to live their life without any pain or fear”.
The National Institute for Health and Care Excellence (NICE) are due to evaluate the drug and make their decision in May 2018 and I called on the Minister to look at the life-changing benefits of the drug.
I’ve met James and heard first hand of the real impact that EPP has had on him and his family’s life, and how his life improved when given the drug. It’s important we do all we can to help him and other sufferers to get access to this drug, allowing James and others to enjoy things that people take for granted.
You can read the full transcript of the debate online here: https://goo.gl/R2uHuY