Health Secretary Wes Streeting has backed Jesy Nelson’s call for newborn screening for spinal muscular atrophy (SMA), but families affected by the condition say their years of campaigning have been ignored. Nelson, former Little Mix star, revealed her twins were diagnosed with SMA type 1, a rare genetic condition causing muscle wastage, prompting Streeting to say she was “right to challenge and criticise how long it takes to get a diagnosis”.
However, Portia Thorman, head of advocacy and community at charity SMA UK, described the intervention as “bittersweet”. Her nine-year-old son Ezra has SMA1 and she has been campaigning for newborn screening for four years, writing numerous letters to Streeting. She said he previously declined an invitation to visit a pilot screening study at the University of Oxford.
“It’s a bit of a kick in the teeth because he has known about it for a long time,” Thorman said. “We have pretty much been ignored, especially by parliamentarians … it’s not impacting the masses or their votes.”
Amy Moffatt, whose five-year-old son Oakley was diagnosed with SMA1 at 10 weeks, said it was “so sad” that Nelson’s platform was needed to raise awareness after years of advocacy. Oakley received gene therapy but requires full-time care costing tens of thousands of pounds, funded through Tree of Hope. “He is happy,” Moffatt said, “but we’ll have to talk to our children about how different it could have been if they had been screened.”
England does not screen newborns for SMA, though Scotland will start in April. The UK National Screening Committee is reassessing the policy. Countries including the US, Germany, Japan and Ukraine already screen. Molly Everitt, 23, who has SMA type 3, said the media narrative around the condition has been “very negative”, and many with SMA live full lives. She noted it was “surreal” to see SMA on front pages after years of campaigning went unheard.
