Tel: 01789 267520

NHS England replies to the joint clinicians/charities letter

29 September 2017

The request to include those with more than two SMN2 copies and over 7 months of age in the SMA Type 1 nusinersen EAP (read the letter here) is not yet successful.

The reply talks about the possibility of making a further application to NHS England’s specialised commissioning clinical panel’ but also says ‘NHS England tries to avoid duplication of work with NICE where the timings are suitable’.

The reply also confirms, as we already know, that NICE is working to decide whether "'To appraise the clinical and cost effectiveness of nusinersen within its marketing authoriseation for treating spinal muscular atrophy.' The time scale for this technology appraisal is not yet clear".

We will be talking further with clinicians, TreatSMA, the other charities and Biogen about the unacceptable delays and what we can do to ensure progress

Read the full reply here