Health Secretary Wes Streeting has backed Jesy Nelson's call for improved screening for spinal muscular atrophy (SMA) after her twin daughters were diagnosed with the rare genetic condition. The former Little Mix star revealed on Sunday that her babies, Ocean Jade and Story Monroe Nelson-Foster, have SMA type 1 (SMA1), the most common and severe form of the disease.
Streeting told ITV News: 'My heart goes out to Jesy Nelson... She's challenged us to go further on screening, and she is right to do so.' He acknowledged that more treatments are now available for SMA, with children 'not just living and surviving but thriving'. However, he criticised the time taken to get a diagnosis and pledged to 'look not just at screening for SMA, but to make much better use of genomic medicine'.
Newborn screening for SMA is not currently available in the UK, though Scotland has announced it will introduce screening from spring. The UK National Screening Committee does not recommend screening but has commissioned a reassessment due to treatment developments. Muscular Dystrophy UK has called for all babies to be screened at birth.
In an Instagram video, Nelson described the diagnosis as 'frustrating because there's so many children that have been detected from birth... and they've gone on to walk'. She noted that a simple heel prick test could detect the condition and prevent severe outcomes, including loss of mobility and premature death. SMA1 affects one in 10,000 babies worldwide and, without treatment, most do not live beyond two years.
