Singer Jesy Nelson has voiced her profound disappointment and anger following a parliamentary debate that resulted in a limited rollout of newborn screening for Spinal Muscular Atrophy (SMA).
Nelson, whose one-year-old twins Ocean and Story were diagnosed with SMA Type 1 in January, has been a vocal advocate for universal newborn screening across the National Health Service. After attending a parliamentary session on the matter, she described feeling “heartbroken and outraged.”
The debate concluded with a decision to implement newborn screening for SMA in only 72% of England, leaving the remaining 28% without access when the program begins in October. Nelson expressed her distress, questioning the fairness of a postcode-dependent healthcare approach.
"Based on where you live, how does that make sense? How is that fair?" Nelson questioned in a statement following the debate. She further elaborated on Instagram, directly addressing Sharon Hodgson, the Parliamentary Under-Secretary of State in the Department for Health and Social Care, who argued against a full rollout. Nelson highlighted that factual evidence shows early treatment can be life-changing for children diagnosed with SMA, while untreated children risk not reaching their second birthday.
To illustrate the impact of treatment, Nelson showed Hodgson a video of two sisters with SMA. One sister, who received treatment from birth, was able to walk, while the other, who did not, required a wheelchair. Nelson reported that Hodgson was “gobsmacked” by the visual evidence.
Nelson’s advocacy stems from her personal experience. She described the daily challenges of caring for her twins, who require medication every four hours, regular repositioning due to their inability to move independently, and constant monitoring to prevent choking. She emphasized the mental and physical toll on families affected by the disease.
The parliamentary debate was initiated by a petition launched by Nelson, which garnered over 150,000 signatures. The UK National Screening Committee recommended a phased rollout to evaluate the screening's effectiveness and cost to the NHS. Areas that will initially miss out on the screening include Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth. The trial will utilize seven of the 13 available NHS testing laboratories.
During the debate, other Members of Parliament raised similar concerns. Amanda Martin, MP for Portsmouth North, questioned why babies born in certain areas were deemed less important. Ruth Jones, MP for Newport West and Islwyn, pointed out that Ukraine had managed to begin newborn SMA screening even during wartime.
Spinal Muscular Atrophy is a genetic disease that weakens muscles by affecting motor neuron cells. Type 1 SMA, the most severe form, is present at birth and can lead to death by age five if untreated. Other types vary in severity, affecting the ability to sit, stand, or walk.