Singer Jesy Nelson has declared she will "keep on fighting" after a parliamentary debate on newborn screening for Spinal Muscular Atrophy (SMA) resulted in a staggered rollout, leaving a significant portion of England without access to the test.
Nelson, whose one-year-old twins Ocean and Story were diagnosed with SMA Type 1 in January, attended a parliamentary debate on Monday concerning the implementation of a nationwide newborn screening for the condition. The outcome means that only 72% of the country will have access to the screening when it begins in October, while the remaining 28% will not.
"I was absolutely fuming. I feel so let down," Nelson stated outside Parliament, fighting back tears. "We are debating whether SMA future children should be disabled or not. Based on where you live, how does that make sense? How is that fair?"
The debate was initiated by a petition launched by Nelson, which garnered over 150,000 signatures. The UK National Screening Committee advised a phased rollout to evaluate the screening's effectiveness and cost to the National Health Service (NHS).
Areas that will not initially have access to the screening include Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth. The trial will utilize seven out of the 13 available NHS testing laboratories. Sharon Hodgson, Parliamentary Under-Secretary of State in the Department for Health and Social Care, explained that the six laboratories not included in the initial trial "do not currently have the requisite equipment" for testing, but could be added if that changes.
Following the debate, Nelson addressed her followers on Instagram, expressing her disappointment and questioning the decision. She highlighted that early treatment for SMA, administered from birth, is "completely life changing." Without treatment, she noted, children diagnosed with SMA may not survive past their second birthday.
Nelson recounted a conversation with Hodgson after the debate, where she showed the minister a video comparing two sisters with SMA. One sister, who received treatment from birth, was mobile, while the other, who did not, was in a wheelchair. "When I showed her in this video, her exact words were, 'wow, is that what the treatment does? Wow.' She was gobsmacked," Nelson said.
"I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease," Nelson stated, her voice trembling. "You are basically telling me that if you live in a certain postcode, you're not as important as the other 72% of England. Your life doesn't matter as much. It's outrageous."
She questioned when a timeline would be established to ensure no baby is missed and does not have to suffer unnecessarily. Nelson contrasted her daily challenges of caring for her twins—including managing breathing and feeding assistance—with the reality that such decisions do not directly impact policymakers.
During the parliamentary session, Amanda Martin, MP for Portsmouth North, questioned why babies born in her constituency would matter less than those in other parts of the country. Ruth Jones, MP for Newport West and Islwyn, pointed out that Ukraine has managed to implement newborn SMA screening even amidst wartime.
Spinal Muscular Atrophy is a rare genetic condition that weakens muscles. SMA Type 1, the most severe form, is present at birth and significantly impacts a child's ability to sit, often leading to death by age five if untreated. Other types of SMA have varying degrees of severity and onset.