Health secretary Wes Streeting has praised Jesy Nelson's campaign for newborn screening for spinal muscular atrophy (SMA), but families affected by the condition say their years of advocacy were ignored before the former Little Mix star spoke out.
Portia Thorman, head of advocacy at SMA UK, whose nine-year-old son Ezra has SMA type 1, said she had written many letters to Streeting over four years. “It’s a bit of a kick in the teeth because he has known about it for a long time,” she said. Thorman added that Streeting declined an invitation to visit a pilot newborn screening study at the University of Oxford.
Amy Moffatt, whose five-year-old son Oakley has SMA type 1, said: “For it to take Jesy and her platform to raise the awareness when people have been knocking on everyone’s doors for so long, it’s just so sad.” Oakley was diagnosed at 10 weeks and requires full-time care and costly adaptations.
England does not currently screen newborns for SMA, though Scotland has announced it will start in April. The UK National Screening Committee is reassessing the issue. Countries including the US, Germany, Japan and Ukraine already screen for the condition.
Molly Everitt, 23, who has SMA type 3, said the media narrative had been overly negative. “So many of us with SMA have gone on to do really amazing things,” she said. She described the sudden national attention as “surreal” after years of campaigning without being heard.
