Families affected by spinal muscular atrophy (SMA) have expressed mixed feelings over health secretary Wes Streeting’s recent response to calls for newborn screening, following a campaign by former Little Mix star Jesy Nelson. While Streeting said Nelson was “right to challenge” the slow diagnosis process, campaigners say their own pleas for action have been ignored for years.
Portia Thorman, head of advocacy at SMA UK, whose nine-year-old son Ezra has SMA type 1, said: “We have pretty much been ignored, especially by parliamentarians. It feels like because it’s a rare disease and not impacting the masses, they have brushed it aside.” She noted that Streeting had previously declined an invitation to visit a pilot newborn screening study at the University of Oxford.
Amy Moffatt, whose five-year-old son Oakley was diagnosed with SMA1 at 10 weeks, said it was “bittersweet” that Nelson’s fame had achieved what years of campaigning could not. “For it to take Jesy and her platform to raise awareness when people have been knocking on everyone’s doors for so long, it’s just so sad,” she said. Oakley received gene therapy but requires full-time care and costly adaptations.
England currently does not screen newborns for SMA, though Scotland will start in April. The UK National Screening Committee has commissioned a reassessment. Countries including the US, Germany, Japan and Ukraine already screen for the condition, which affects 10,000 to 14,000 babies worldwide annually.
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 and live a very full life,” she said. She described seeing SMA on front pages as “surreal” after years of campaigning without public attention.
Charlie Mosey, mother of four-year-old Rupert who has SMA1, said: “It’s fantastic Jesy has helped raise the profile, but it’s bittersweet that it took a celebrity to get the news talking about it.”
