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The Fight Goes On

The fight goes on

Dear All,

This morning we sent to all the stakeholders a new document developed by us over the weekend that analysed the impact of the proposed guidance and the Managed Access Agreement (MAA) on some groups of patients, and also offered recommendations. It was intended to help everyone avoid an appeal. We called it A Subpopulation Review.

Click to read the Subpopulation Review

We expected the stakeholders to work on the issues raised in it during the day today.

In the view that we heard nothing from NICE or NHS England, we came to a sad conclusion that a formal appeal is inevitable. We filed it shortly before 5pm.

We intend to withdraw the appeal as soon as our and clinicians’ requests are taken into consideration. We have explored every possible avenue before making this heavy decision, but we cannot proceed further without NICE, NHS and Biogen agreeing to amend MAA so as to ensure treatment for all.

Those who have been receiving Spinraza under EAP or other mechanisms will continue to do so uninterrupted.

We understand that the stance and recent actions of the SMA community and the clinicians have now prompted NICE, NHS England and Biogen to look for a more acceptable solution than the proposed MAA. We will share any updates we receive.

Now would be a good time to go to press and express your emotions about this betrayal after the joyful announcement three weeks ago.

— The TreatSMA team

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