Last weekend we announced on our website the changes that Roche were making to their compassion access program in light of Covid-19 challenges. While this was a welcome move we also published a statement questioning the decision not to go further with access. Following that statement we held a call with Roche and their UK Managing Director: We wanted to provide you a summary of that conversation.
Roche today released new data which shows a significant improvement in SMN levels and milestones in infants with type 1. The data covering 12 months of treatment confirmed clinically meaningful efficacy.
We have prepared a statement in response to the recent Roche announcement, specifically relating to the expansion of the compassion access program. Please see below to read the statement.
We know across the world that people have been struggling to receive their Spinraza treatment because of the coronavirus causing significant hospital capacity and safety issues. Roche today have announced that they are relaxing their compassion access program eligibility criteria to help those who have been affected by this. Statement below:
Following some confusion in the SMA community Patient Advocacy Groups have reached out to clinicians with questions and with coordination through MDUK we can now offer some insight.
Two of our very own stars were featured on ITV today (08/04/20) showing how despite isolating in different parts of the country they are still able to keep in touch and have fun.
It is with sadness that we announce departure of Gary McKie from TreatSMA trustee board.
NICE and NHS England and NHS Improvement have taken advice from clinical experts and consulted with patient advisory groups (Treat SMA, MDUK and SMA UK) to review the potential impact of COVID-19 on the delivery of the Managed Access Agreement (MAA) and have released the following statement.