Rare Diseases: Medical Treatments

Department of Health and Social Care written question – answered at on 28 November 2023.

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Photo of Kerry McCarthy Kerry McCarthy Shadow Minister (Climate Change and Net Zero)

To ask the Secretary of State for Health and Social Care, with reference to section 6 of the National Institute for Health and Care Excellence's (NICE) health technology evaluations: the manual, published on 31 January 2022, whether she has had discussions with NICE on the potential impact of the severity modifier on technology appraisals for (a) cystic fibrosis and (b) other rare diseases.

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

Departmental officials regularly discuss a range of issues with the National Institute for Health and Care Excellence (NICE), including in relation to the application of the severity modifier that was introduced in 2022. NICE is responsible for determining whether a severity weighting should apply to the evaluation of individual medicines in line with its published methods and processes. NICE has recently published draft guidance for consultation on the use of Orkambi, Symkevi and Kaftrio for the treatment of cystic fibrosis and stakeholders now have an opportunity to comment on NICE’s recommendations. NICE continues to work with stakeholders to address the issues highlighted by the committee in the draft guidance.

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