Jesy Nelson Reacts to Parliamentary Debate on SMA Screening
Jesy Nelson, former Little Mix singer, expressed that she is "heartbroken" and "outraged" following a parliamentary debate concerning spinal muscular atrophy (SMA) screening. Nelson has been advocating for newborn screening of SMA after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the muscle-wasting condition.
SMA is treatable if detected early, but without diagnosis, it can lead to death within two years. Scotland implemented newborn screening for SMA in March; however, the UK-wide program will have a limited rollout.
Nelson voiced frustration after public health minister Sharon Hodgson defended the staggered implementation, stating:
"I cannot believe we are still debating this."
Nelson responded on Instagram, saying:
"You are basically telling me that if you live in a certain postcode, you're not as important. It's outrageous."
Hodgson explained that the limited availability of testing facilities is restricting a full rollout of SMA screening.
The BBC has reached out to both Nelson and the Department of Health for comment regarding her statements.
Details of the Parliamentary Debate and Screening Rollout
The debate on Monday was prompted by a petition initiated by Nelson, which garnered over 150,000 signatures. It was announced that SMA screening will begin in October 2026, three months earlier than initially planned, but will only cover 72% of newborns in the UK.
Notably, cities including Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth will not have access to the screening. Wales and Northern Ireland, which manage their own health policies, have yet to announce any screening programs.
Nelson criticized the situation, stating:
"If it's safe enough for 72% of England to get this tested at birth, then why is it not good enough for the [other] 28%? How do we justify that? How is that ethical? It makes no sense."
The staggered rollout follows recommendations from the UK National Screening Committee, which aims to assess the screening's effectiveness and the treatment costs to the NHS. The trial will involve seven of the 13 NHS testing laboratories in the UK.
Hodgson informed parliament that the remaining six laboratories currently lack the necessary equipment for SMA testing but added:
"If that changes, more labs could be included."
Amanda Martin, MP for Portsmouth North, expressed concern that parents in her area would not have access to the tests, asking:
"We need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country?"
Ruth Jones, MP for Newport West and Islwy, highlighted that Ukraine had initiated newborn SMA screening despite ongoing conflict, questioning why the UK was lagging behind.
In response, Hodgson stated:
"Where we can go further and faster safely, I will push for that to be the case."
Jesy Nelson’s Personal Experience and Advocacy
Nelson, who attended the debate, described her devastation that the issue was not being addressed more urgently. She shared:
"I cannot tell you how heartbreaking it is to know that my children's lives could have looked completely different. They could have been walking by now. They didn't have to be on breathing machines.
I have to give them medicine every four hours. I have to turn them every two hours, because they can't do that themselves. I have to make sure they're not choking... because this disease has affected their muscles with their swallowing.
To know that there are people that are literally making this decision to make children suffer... I have no words."
Nelson recounted showing Hodgson a video after the debate featuring two sisters living with SMA—one who received treatment and one who did not. She said:
"One is in a wheelchair, the other is running along, pulling her sister along."
Nelson claimed Hodgson was surprised by the video and admitted she had not realized the full impact of early treatment. Nelson questioned:
"How do we have the health minister standing up in parliament arguing why this should not be rolled out across the whole of England, when she doesn't even know how life-changing this treatment is?"
The charity Muscular Dystrophy UK welcomed the debate, describing it as "encouraging and moving to hear many MPs speaking passionately about SMA newborn screening." However, the charity emphasized:
"We'll continue to push the UK government to roll out screening in every part of the UK. No more postcode lottery."
Treatment Options and Screening Status for SMA
In 2021, the NHS approved a gene therapy drug called Zolgensma to treat babies with SMA. According to SMA UK, the drug delivers a healthy copy of the affected gene to the body. However, timing is critical as irreversible damage to the nervous system may have already occurred.
Currently, SMA screening is only conducted for newborns who have a sibling with the condition. SMA UK advocates for the inclusion of SMA in the blood spot test that screens newborns for 10 other rare but serious conditions.
The charity estimates that approximately 47 babies were born with SMA in the UK in 2024. It also notes that about one in 40 people carry the altered gene that can cause the disease.
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