Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps he is taking to help patients with cystic fibrosis to access the drug Orkambi; and if he will make a statement.

In July 2016, the National Institute for Health and Care Excellence (NICE), the independent body that develops guidance on drugs and treatments for clinical and cost effectiveness for the National Health Service in England, was unable to recommend Orkambi as a cost effective use of NHS resources.

Since then there has been a constructive dialogue between the company, NHS England and NICE, including discussion hosted through NICE’s confidential ‘Office for Market Access’, although NICE is yet to receive any fresh proposals from Vertex, the company that manufactures Orkambi. Both NHS England and NICE have been consistent in advice to Vertex, that progress can only be made by working through NICE’s appraisal processes and the existing commercial framework.

Any funding decisions in the absence of positive NICE technology appraisal guidance should be made by NHS commissioners based on an assessment of the available evidence and on the basis of an individual patient’s clinical circumstances.