Jesy Nelson has met Health Secretary Wes Streeting to demand the rollout of newborn screening for spinal muscular atrophy (SMA), the muscle-wasting disease affecting her twin babies. The former Little Mix singer was told by medics that her children will likely never walk.
During a filmed meeting for ITV's This Morning, Nelson asked why it had taken her case for the condition to "be taken seriously". Streeting acknowledged the question was fair, adding that his inbox had been full of families in similar positions. Nelson described the lack of screening as "madness", pointing out that three life-changing treatments exist but are not part of the heel prick test.
The Mirror's campaign calls for a simple £5 check for SMA to be added to the newborn heel prick test. Most developed nations already test for SMA at birth. Pharmaceutical firm Novartis estimates that 33 UK babies every year are left in a wheelchair due to late diagnosis, and at least 16 children born with SMA since 2019 have died.
The UK National Screening Committee declined to add SMA to the programme in 2018, but three major treatments have since become available on the NHS. A pilot is being prepared that would screen only some babies in England, meaning a full rollout is unlikely before 2031. NHS Scotland, however, will introduce screening from spring. Streeting said an evaluation involving around two-thirds of babies is due to report in January 2028, and he is working to see if it can cover all babies and be brought forward.
Giles Lomax, chief executive of SMA UK, who joined Nelson in the meeting, said the situation was "not acceptable". He praised Nelson for making a powerful case. Zolgensma, a one-off gene therapy, has been available on the NHS since 2021 and is effectively a cure if administered early. Nelson said the "system isn't working" and predicted more families would face the same ordeal.
