Oral Answers to Questions

Debate between Cheryl Gillan and Jane Ellison

Tuesday 5th January 2016 Commons Chamber

[Jane Ellison]

I am glad the right hon. Gentleman mentions that point; the House may not be aware that we recently added four new rare diseases to the newborn heel-prick test, which has helped to detect more than 1,400 children with a rare disease. I am disappointed to hear that he feels that some parents had issues with follow-up, and of course we will look into that, but I think he will find that the UK rare diseases strategy, which was published in 2013 and contains 51 commitments from government, covers that. The first report back on that strategy will take place this spring and it is being done by the UK Rare Disease Forum. I am happy to speak to him afterwards about whether the excellent organisation he names is part of that.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

One such rare disease is Duchenne muscular dystrophy. I am sure the Minister is aware that we are awaiting what we hope will be a positive decision from NHS England on a drug called Translarna, which could help boys with the disease. We were due to have that announcement yesterday. Does she have any further and better particulars on that? Will she update us on when we can expect an announcement, which we hope will be a positive one?

[Jane Ellison]

I know that my colleague, the Under-Secretary of State for Life Sciences, is working very hard on that matter, and is hoping to make an announcement soon. I am sure that, at that point, he will be able to update my right hon. Friend.