Nusinersen

(asked on 20th May 2019) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions his Department has held with (a) NICE, (b) NHS England and (c) Biogen on a Managed Access Agreement for SMA treatment Spinraza.


Answered by
Seema Kennedy Portrait
Seema Kennedy
This question was answered on 29th May 2019

Discussions about managed access agreements for technologies undergoing assessment by the National Institute for Health and Care Excellence (NICE) are rightly held between NHS England as an independent body and the manufacturer concerned. Departmental officials play no role in such discussions, but are in regular contact with NICE and NHS England colleagues about a range of issues, including progress in discussions about a potential managed access agreement for Spinraza (nusinersen) for the treatment of spinal muscular atrophy. Ministers have also held meetings with Biogen, NICE and NHS England on a number of occasions, at which the availability of Spinraza was discussed.

NHS England and NICE have made stakeholders and the public aware of the outcome of its appraisal committee meeting of 8 May and NICE is now able to recommend the use of Spinraza for NHS patients in England, subject to a managed access agreement agreed between NHS England and Biogen which makes Spinraza available to children with the most severe form of spinal muscular atrophy available with immediate effect. NICE’s Appraisal Committee’s considerations and recommendations will be contained in the final appraisal document which will be published in due course, with final guidance expected in June 2019.

Reticulating Splines