Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to the draft guidance published by NICE on 3 November 2023, what steps she is taking to reduce delays in access to (a) treatment and (b) medicines for people with cystic fibrosis.

The Government wants National Health Service patients to benefit from rapid access to effective new medicines. The National Institute for Health and Care Excellence (NICE) makes recommendations for the NHS on whether all new licensed medicines should be routinely funded by the NHS based on an assessment of their costs and benefits and aims wherever possible to publish guidance close to the point of licensing. The NHS is legally required to fund medicines recommended by NICE, normally within three months of final guidance.

Since 2019, NHS patients have been able to access the cystic fibrosis therapies Orkambi, Symkevi and Kaftrio through an interim access agreement. The agreement makes the medicines available for a limited time at a reduced price, while further information has been collected to inform a NICE appraisal. On 15 November 2023, the Medicines and Healthcare products Regulatory Agency approved a new licence extension and children as young as two years old with cystic fibrosis are now eligible to receive Kaftrio through the interim access agreement.