Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that (a) nusinersen/Spinraza and (b) other life-saving drugs are made available for people with spinal muscular atrophy.

The Government wants National Health Service patients to be able to benefit from effective new medicines in a way that represents value for money to the taxpayer. Through its technology appraisal and highly specialised technologies programmes, the National Institute for Health and Care Excellence (NICE) makes recommendations for the NHS on whether new medicines should be routinely funded by the NHS. NHS organisations are legally required to fund medicines recommended by NICE.

NICE is currently developing technology appraisal guidance on the use of Spinraza for the treatment of spinal muscular atrophy. NICE was unable to recommend Spinraza as an effective use of NHS resources in its draft guidance published in August 2018. Discussions have since been taking place between the manufacturer of Spinraza, Biogen, and NHS England to explore whether there are commercial flexibilities that might enable NICE to recommend the drug as a clinically and cost-effective use of NHS resources. Biogen has now submitted a revised submission and a meeting of NICE’s independent Appraisal Committee took place on 6 March to consider the recommendations. Details from the meeting will made available on the NICE website in due course.