Question to the Department of Health and Social Care:

To ask His Majesty's Government what consideration was given to the costs of complicated grief in families of patients dying from SOD-1 MND during the evaluation process that led to the decision to decline access to tofersen for NHS patients.

The National Institute for Health and Care Excellence (NICE) has not yet started its evaluation of tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations, and has therefore not published any guidance or recommendations on whether tofersen should be available for National Health Service patients. In developing its recommendations, the NICE will follow its published methods for health technology evaluation, which will include a thorough assessment of the available evidence. This takes into account all health-related costs and benefits, including health benefits not only to patients but, where relevant, to other people such as carers. The NICE’s aim is to publish its guidance on tofersen as close as possible to the date it receives its marketing authorisation.