March ‘It’s a real-life Hunger Games’: a lifesaving drug costs $2m, but not every child can get it

The Guardian has published an article emphasising the importance of treating SMA pre-symptomatically, with a focus in the difference in prognosis. Dr Elizabeth Wraige, a Consultant Paediatric Neurologist at Evelina London Children’s Hospital, is quoted in the article explaining the devastating impact of providing an SMA diagnosis to parents over the last ten years. “Parents feel as if they’ve been hit by a sledgehammer,” she says. “In that conversation, any hope that it was something that could be remedied was taken away,” says Wraige, a paediatric neurologist at Evelina London children’s hospital. “It was devastation.”