Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what assessment he has made of the effect on young people with cystic fibrosis of making the drug Orkambi available on the NHS.

Through its technology appraisal programme, the National Institute for Health and Care Excellence (NICE) provides authoritative, evidence-based guidance for the National Health Service on whether drugs and other treatments represent a clinically and cost effective use of resources. NHS organisations are legally required to make funding available for drugs and treatments recommended in NICE technology appraisal guidance.

NICE published technology appraisal guidance in July 2016 that does not recommend Orkambi as a clinically and cost effective use of NHS resources. NICE concluded that, although clinically significant for managing cystic fibrosis, the longer term outcomes and benefits were not sufficient to justify its considerable costs. Orkambi is not therefore routinely available to NHS patients with cystic fibrosis.