Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure the continued NHS funding of modulator therapies that are used to treat (a) children, (b) new patients and (c) other patients with cystic fibrosis.

Orkambi, Symkevi and Kaftrio are currently available as treatment options for eligible National Health Service patients with cystic fibrosis, under the terms of a commercial agreement reached between NHS England and the manufacturer. This agreement has enabled the collection of data to inform a full appraisal of these medicines by the National Institute for Health and Care Excellence (NICE), which is currently underway.

NICE published draft guidance on 3 November 2023 which does not recommend Orkambi, Symkevi and Kaftrio for the treatment of cystic fibrosis. The draft guidance is now subject to a public consultation and NICE’s committee will carefully consider all evidence as well as comments received during the consultation in developing its final guidance, which is expected to be published on 20 March 2024. Patients already receiving these treatments will have continued access following the publication of NICE’s final guidance, regardless of the outcome.