Parliamentary Search

Written question asked by Anne Marie Morris (Conservative) on Thursday, 15 November 2018, in the House of Commons. It was due for an answer on Monday, 19 November 2018. It was answered by Steve Brine (Conservative) on Thursday, 22 November 2018 on behalf of the Department of Health and Social Care.

Nusinersen

Question

To ask the Secretary of State for Health and Social Care, what progress NHS England, Biogen and NICE have made in discussions on a managed access agreement for the use of Spinraza for the treatment of spinal muscular dystrophy.

Answer

The National Institute for Health and Care Excellence (NICE) is currently developing technology appraisal guidance for the National Health Service on the use of Spinraza (nusinersen) for the treatment of spinal muscular atrophy (SMA).

NICE is in discussion with Biogen (the company that manufactures Spinraza) to determine if there are any commercial flexibilities that could support the company in putting forward a cost-effective price in order for NICE to recommend use of the drug as a clinically and cost-effective use of NHS resources.

NHS England has published an Interim Policy Statement determining the circumstances in which existing patients will be supported to access Spinraza through the Expanded Access Programme (EAP) scheme sponsored by Biogen. The policy statement enables existing patients with type 1 SMA to access Spinraza in advance of NICE’s guidance, although the company has now withdrawn the EAP for newly diagnosed patients.

Secondary information

Type
Written question
Reference
191928
Session
2017-19
Subjects
Muscular dystrophy Nusinersen
Link
View this Written question on www.parliament.uk