Almost eight weeks since the third NICE committee meeting NICE has released a statement that the discussions between NHS England and Biogen will be discussed at another committee meeting next week on Wednesday 8 May.
NICE’s statement reads:
Following the meeting on 6 March 2019, the appraisal committee asked NHS England and Biogen to enter into commercial discussions to see whether a managed access arrangement could be agreed for nusinersen consistent with NICE’s framework for determining cost effectiveness. The outcome of these discussions and the consequences for guidance development for this topic will be considered by the committee on Wednesday 8 May. Given the nature of the discussion, this will be held in private.
We understand that the ongoing delays to the appraisal process for Spinraza are extremely frustrating for families, and we will continue to work with SMA UK and Treat SMA to press NICE, NHS England and Biogen to reach a solution.
Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:
Families are crying out for Spinraza, and continued delays are causing them anguish. Twenty-four European countries, including Scotland, now provide this life-changing treatment, but England, Wales and Northern Ireland are lagging behind.
We will be writing to NICE, NHS England and Biogen to make it clear that urgent action is needed and that all parties need to show flexibility so that a positive decision can be reached.
You can help us in keeping the pressure on by:
- Writing to your local MP and asking for their support. We have written a template letter you can use and a handout that you can send which includes more background about the fight for access. You can find your MP’s contact details on the Parliament website.
- Tweeting your MP with a link to our video of Zac and his family talking about the difference Spinraza has made to their lives.
For more information
- If you would like information or support, please call our Information and Support Team on our free helpline: 0800 652 6352 (Mon-Fri, 8.30am-6pm) or email us at: firstname.lastname@example.org
- To find out how you can join our campaign, email Clare Lucas at: email@example.com. And if you would like to share your story, email Laura Burge at: firstname.lastname@example.org
- You can also find our factsheet on SMA here and more information on Spinraza here.