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PARLIAMENTARY WRITTEN QUESTION
(9 June 2025)

Question Asked

To ask the Secretary of State for Health and Social Care, if he will make it his policy that all eligible patients with SOD1-related Motor Neurone Disease can access Tofersen.

Asked by:
Sarah Hall (Labour)

Answer

The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.

NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources.


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