TreatSMA

Support grows for Spinraza

26 June 2019

TreatSMA continues to work with NICE, NHSE and Biogen. We are seeking to expand inclusion if possible based on the recent appeal and campaign that TreatSMA and the community colaborated on together. TreatSMA and the community have made ITV News…

The fight goes on

17 June 2019

After sending additional information to the stakeholders, we have now proceeded with appealing the proposed nusinersen guidance and the Managed Access Agreement.

The SMA Community and clinicians react to draft NICE guidance

14 June 2019

The clinicians and SMA community react to the draft nusinersen guidance

No update yet but please stay tuned

14 June 2019

We are trying to find a way out of the MAA criteria, please stay tuned.

NICE refuses to reconsider Spinraza criteria

8 June 2019

NICE is refusing to amend the entry criteria for Spinraza treatment. We are fighting on.

Spinraza treatment only for some?

8 June 2019

We have analysed the NICE/NHS eligibility criteria for Spinraza and we view them as potentially depriving hundreds of children and adults of access to the only treatment. Read on.

NICE starts appraising Zolgensma to treat spinal muscular atrophy

8 June 2019

Closer to a new treatment: NICE has begun the appraisal process of SMA gene therapy Zolgensma.

Draft Managed Access Agreement for Spinraza has been published

3 June 2019

NICE releases the final draft of the Managed Access Agreement. We will challenge some of the treatment criteria it proposes.