Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK, said:
NICE, NHS England and Biogen must urgently come together to find a solution and put an urgent, temporary scheme in place for Spinraza before any more children’s lives are lost. Without access to this life-changing treatment infants will irreversibly lose the ability to walk, crawl and swallow, while babies with the most severe form of the condition are likely to die before they reach their second birthday.
We are very grateful to Mary Glindon for her support and for bringing this to the attention of the Prime Minister, and are pleased to hear from the Prime Minister that Health Ministers will be asked to look into it. But action is needed, not simply a review, to find an urgent solution that ensures access to this treatment before any more children’s lives are lost.