As things stand we still do not know if the decision will be announced tomorrow as to whether Spinraza will be available on the NHS in England, Wales and Northern Ireland. We fully understand that this is an emotional time for all. We live with SMA ourselves and we know the importance of what’s going on from our first hand experience. We are as anxious and scared as any of you. We feel your fear and anticipation. If it was up to us, we all would have had access two years ago!
What we can promise is that we will do everything we can to share updates with you. And we can promise you that our updates are fully accurate and not based on some whisper from a person who has no knowledge of the process. TreatSMA is in the thick of it fighting your corner every single day.
Should there be no update tomorrow we will put a post up in the evening as to how we can push forward as a community for our right to access the only treatment for spinal muscular atrophy.
— The TreatSMA Team