Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether she is taking steps to improve the (a) diagnosis rate, (b) co-ordination of care and (c) access to specialist (i) care, (ii) treatment and (iii) support for individuals with cystic fibrosis.

NHS England commissions 47 specialised cystic fibrosis centres for adults and children across England, in addition to supporting the optimal monitoring of patients with cystic fibrosis at home, and supporting best practice in remote consultations. Service specifications published by NHS England clearly define the standards of services, care, and outcomes that people can expect from these centres. Service specifications aim to deliver improvements to life expectancy and quality of life for adults and children with cystic fibrosis.

Since 2019, thousands of people with cystic fibrosis have been able to benefit from licensed treatments, firstly Orkambi and Symkeviand and then Kaftrio, following its marketing authorisation in 2020. Access to these treatments is provided under the terms of a commercial agreement reached between the manufacturer, Vertex, and NHS England, with the full support of the National Institute for Health and Care Excellence (NICE).

The company supplying cystic fibrosis treatments is prepared to proceed to commercial discussions with NHS England to secure access to disease-modifying treatments for future patients at a price that represents value to the National Health Service. Existing patients, and new patients who are started on these treatments while the NICE evaluation is ongoing, will continue to have access to the treatments after the NICE has issued its final recommendations, irrespective of the outcome.

Cystic fibrosis is now mainly detected in newborn babies as part of the heel prick test, which is offered to all newborn babies. Otherwise, it is normally diagnosed by a combination of gene sequencing from blood tests and a sweat test, which is performed at specialist centres.