Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of precision medicine on the (a) life expectancy and (b) quality of life of people living with motor neurone disease.

The Government’s 10-Year Health Plan sets out our vision for a future where genomic information and insights are fundamental to healthcare, enabling precision medicine, predictive prevention, and personalised treatment, including for people with motor neurone disease.

The National Institute for Health and Care Excellence 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.