News

Advocacy News

Scottish Access to Spinraza – PACE Meeting

SMC PACE Meeting – powerful patient testimonies convey the urgent need for Spinraza in Scotland On 13th March we attended a special PACE (Patient and Clinician Engagement) meeting at the Scottish Medicines Consortium in Glasgow. This meeting formed part of their appraisal process for Spinraza and is an additional stage that can be used to gain…

READ ARTICLE

Managed Access Agreement for Spinraza – Biogen Update

A Managed Access Agreement (MAA) for Spinraza has been confirmed as currently in discussion by the manufacturer, Biogen. The MAA for Spinraza is being explored by Biogen, NHS England and NICE (National Institute for Health and Care Excellence), whilst the longer term funding of the treatment is considered under the Single Technology Appraisal (STA) process, by…

READ ARTICLE

NICE Spinraza appraisal – help us work towards quicker access

NICE, The National Institute for Health and Care Excellence has confirmed it has started the appraisal of Spinraza following a frustrating delay, which has been partially down to uncertainty about how the treatment will be reviewed for funding by the NHS. The treatment will now be being assessed for all types of SMA, with Spinraza…

READ ARTICLE

Fast-track scheme for breakthrough drugs from April ’18

The Government has announced a new plan to speed up the time it takes for new life-changing medicines to reach NHS patients.  From April 2018 an expert panel will select around 5 new drugs or devices for fast-tracking, reducing the time taken by the NHS appraisal and approval processes. As part of the plans, the Government…

READ ARTICLE

Repeat reappraisal plea to NHS England re: EAP for SMA Type 1s

An open letter response has been sent to NHS England, again requesting that the policy on EAP for SMA Type 1 to be reconsidered and restrictions removed to enable all SMA Type 1 babies to have access. The letter drafted by Professor Francesco Muntoni and co-signed by The SMA Trust, along with other patient advocates and…

READ ARTICLE

Unsatisfactory response from NHS England re: criteria for EAP

We have now had a reply to the joint letter which was sent from clinicians and patient advocacy groups to NHS England in August, requesting broadening of the criteria for Type I babies to be included in the EAP.  Unfortunately they are not able to change the current ruling so any new decision would need…

READ ARTICLE

Request to NHS England re: interim policy on EAP for SMA Type 1

An open letter has been sent to NHS England asking for the policy on EAP for SMA Type 1 to be reconsidered and restrictions removed with respect to age and eligibility criteria. The letter co-signed by The SMA Trust, along with other patient advocates and clinicians can be read in full below: Nusinersen letter August 2017

READ ARTICLE

NHS England Announces Interim Policy on EAP for SMA Type 1

NHS England has considered the evidence available within the European Appraisal and have today published an interim policy providing all hospital costs for administering nusinersen to patients with SMA Type 1. This is to support the access scheme offered by Biogen and will continue until either the company cease the access scheme to new patients or when the appraisal…

READ ARTICLE

Biogen: EAP for SMA Type 1 is planned to stay open until year end

In response to a request from SMA Trust and SMA Support UK, Biogen has announced it’s current intention to keep the EAP for SMA Type 1 open ‘for the remainder of the year in the UK’ and will continue to ‘engage with NHS England on the EAP in England and with NICE on the reimbursement pathway…

READ ARTICLE

Biogen statement following disclosure of EU list price for nusinersen

In response to a request from SMA Europe, Biogen representatives and the board members of SMA Europe participated in a joint conference call on Friday 9th June, 2017 to discuss the EU list price for nusinersen. Following a subsequent request to share a summary of the discussion, Biogen provided the following update. For more information…

READ ARTICLE