PARLIAMENTARY WRITTEN QUESTION
Lumacaftor/ivacaftor (4 July 2017)

Ministers and Government officials have had a number of discussions with Vertex and NHS England in which the availability of Orkambi for the treatment of cystic fibrosis was raised.

The National Institute for Health and Care Excellence (NICE) is the independent body that develops guidance for the National Health Service on whether new drugs and treatments represent a clinically and cost effective use of resources.

NICE published final guidance on the use of Orkambi (lumacaftor-ivacaftor) for treating cystic fibrosis homozygous for the F508del mutation in July 2016 that does not recommend this treatment.

Where NICE has not been able to recommend a treatment, funding decisions should be made by the relevant NHS commissioner, based on an assessment of the available evidence.