Department of Health and Social Care written question – answered at on 1 September 2025.
Bambos Charalambous
Labour, Southgate and Wood Green
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve access to innovative treatments for people with SOD1 motor neurone disease.
Karin Smyth
Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the Naitonal Health Service on whether new medicines represent a clinically and cost-effective use of resources. NICE aims, wherever possible, to issue guidance close to the time of licensing, and 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. NICE is working with the company to confirm timelines for this evaluation.
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Secretary of State was originally the title given to the two officials who conducted the Royal Correspondence under Elizabeth I. Now it is the title held by some of the more important Government Ministers, for example the Secretary of State for Foreign Affairs.
