Campaign for Access to Treatments for Spinal Muscular Atrophy

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.

A new clinical trial of Spinraza is about to start in the next few months. Codenamed DEVOTE, it will measure the safety and efficacy of Spinraza administered in much higher doses and to a different schedule. Biogen clearly looks for…

Many people reached out through their PAG to contact clinicians, and as a result MDUK has compiled the following regarding muscle wasting conditions. please see below for information written and compiled by MDUK which we would like to share.