Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what discussions he has had with NICE on updating its final guidance on the use of Orkambi as a result of the scientific research published by Vertex at the North American Cystic Fibrosis Conference on 27 October 2016.

We have had no such discussions. The National Institute for Health and Care Excellence (NICE) is responsible for determining whether its guidance should be updated following the publication of new evidence. NICE published technology appraisal guidance on the use of lumacaftor-ivacaftor (Orkambi) for the treatment of cystic fibrosis in July 2016. NICE plans to review its guidance to determine whether it should be updated in the light of any new evidence in 2019.

If significant new evidence comes to light before the scheduled review date, NICE has processes in place to bring forward a review. NICE remains open to a further approach from the company, with new evidence or a revised price. Although there has been recent correspondence between NHS England and the company, NICE has not yet received any fresh proposals from the company.