PARLIAMENTARY WRITTEN QUESTION
(15 September 2025)

To ask the Secretary of State for Health and Social Care, what discussions he has had with NHS England on ensuring adequate numbers of NHS employees are available to administer Tofersen.

Asked by:
Manuela Perteghella (Liberal Democrat)

I have had no such discussions. The National Institute for Health and Care Excellence (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 National Health Service resources. If a positive recommendation is made, then NHS commissioners will be under a legal duty to fund the treatment for all eligible patients in England.

Answered by:
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