Cystic Fibrosis: Health Services

Department of Health and Social Care written question – answered at on 17 November 2023.

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Photo of John Hayes John Hayes Conservative, South Holland and The Deepings

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve care for patients with cystic fibrosis.

Photo of Andrew Stephenson Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)

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.

Through these centres, NHS England provides a range of innovative treatments including inhaled therapies such as nebulised antibiotics. Since 2019, thousands of people with cystic fibrosis have been able to benefit from licensed treatments – firstly Orkambi and Symkeviand 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).

Within the agreement between NHS England and Vertex, there is a flexible commercial mechanism to ensure continued access for patients already receiving any of the licensed treatments following the conclusion of a full NICE evaluation.

On 3 November 2023, NICE published a consultation on draft guidance that did not recommend these treatments as a cost-effective use of NHS resources. This draft is an initial step in the review of these medicines and does not affect patients’ continued access to these drugs on the NHS in any way. Eligible children and adults with cystic fibrosis can continue to receive ongoing treatment and be initiated onto treatment with these drugs, as clinically appropriate.

NHS England remains committed to ensuring that these life-changing cystic fibrosis medicines are available to everyone who may benefit, now and in the future, and will continue to work with Vertex and NICE through the next stages of the appraisal process to make this possible in a way that is fair to patients and taxpayers.

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