Spinal Muscular Atrophy: Newborn Screening Test

Munira Wilson Excerpts

Monday 22nd June 2026 Westminster Hall

[Lewis Atkinson]

I agree with my hon. Friend, though I think the issue is not mainly financial; I will come on to that in a minute.

As other Members have said, the key point is that treatments are dramatically more effective the earlier they are given: before symptoms appear and before irreversible damage is done. Once motor neurones are lost they do not come back.

[Munira Wilson (Twickenham) (LD)]

I congratulate the hon. Member on his speech. I join him in paying tribute to Jesy Nelson and her campaigning. I also pay tribute to the parents of little Charlie in my constituency. In the words of his mother, he was

“very lucky to celebrate his first birthday last August.”

He was treated with gene therapy after being diagnosed and following symptoms. He is now living his life, but in a wheelchair. Had he been screened at birth he might have had treatment sooner and he might be walking right now.

[Lewis Atkinson]

The hon. Lady is entirely right and I have heard a number of those heart-wrenching stories; she does well to speak so movingly on behalf of her constituent. That is a testament to the key intervention of getting a diagnosis as soon after birth as possible. Today, a baby with type 1 SMA is typically not diagnosed until around six months of age. By then, for many the window when treatment would have had the most impact has closed.

There is an alternative; screening at birth through the existing NHS heel-prick test, which is routinely done on day five of a baby’s life. That already screens for 10 different serious conditions.

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[Amanda Martin]

rose—

[Munira Wilson]

rose—

[Lewis Atkinson]

I will make a little progress and finish my point; I can see the time getting away and I want to make sure that other Members can speak.

The question is why, when so much of the world has acted, the United Kingdom is moving so slowly. That caution sits oddly with the Government’s welcome ambition elsewhere. The generation study is sequencing the whole genome of 100,000 newborns for more than 200 rare conditions, and the Government have committed to offering whole genome sequencing to every newborn within a decade, which is a welcome part of their 10-year health plan. That is a world-leading vision, and I welcome it, but there is some irony in promising to read every baby’s entire genome within 10 years while not rolling out today across the whole of England one well-established, internationally proven test for a single treatable condition.

Screening decisions must, of course, be taken with care. A national programme that affects 650,000 babies a year must be safe, accurate and deliverable across many laboratories. I recognise that the therapies are relatively new and therefore their lifespan impacts require ongoing evaluation. There are legitimate grounds for further research, but the evidence that we have now on its impact should sharpen our urgency, not dull it. I am told that the research the screening committee commissioned estimates that each year, screening could prevent around two babies needing permanent ventilation, prevent around three early deaths and allow around 37 babies to live relatively normal lives.

The economics are striking, too: the typical direct costs of caring for a child severely disabled by SMA—not the drugs costs, but the care costs—are around £450,000 per year. Most of that would be avoidable through diagnosis and treatment at birth. Here, the compassionate course and the fiscally responsible course point the same way.

I gently raise the point—the hon. Member for Strangford (Jim Shannon) has already made it—that there is a geographical discrepancy across the United Kingdom on this matter. Let us welcome the fact that, in Scotland, screening is now being rolled out for every newborn, though that is not the case, and there are no plans that I am aware of, in Northern Ireland or Wales.

I began my speech with two little girls—Jesy’s girls—and I return to them now. The delays to their diagnosis were not inevitable. Had the UK adopted screening on a timetable comparable to that of other countries, Jesy’s twins might have been diagnosed before symptoms appeared. We cannot change that, but we can stop it being true for the next family.

SMA is only the first of many rare genetic conditions where an early, treatable diagnosis will likely become possible in the coming years. If we cannot move at a reasonable pace on screening for SMA, which is proven, costed and adopted across the world, what does that say for the children with other rare genetic diseases, the screening tests for which will be developed in the coming years?

I put the following questions to the Minister, and I hope—and I know the petitioner hopes—for answers that are as specific as she is able to give. First, will the Minister push for conclusions to be drawn more quickly from the in-service evaluation than the 18 months that are currently planned? Every month of delay in roll-out to the 28% of the population not covered by the evaluation will likely delay the diagnosis of one baby, with serious consequences.

Secondly, what does the Minister say to the families of the 13 babies a year who, on the current plans, will be born outside the evaluation’s reach? Are there any interim safeguards against a delayed or missed diagnosis? Thirdly, will the Minister respond directly to the concern shared across the SMA clinical community that knowingly leaving some babies unscreened when the test and treatments already exist raises serious ethical concerns?

Finally, will the Government commit to ensuring that every baby in England is screened for SMA as quickly as possible? Will they continue to roll that out to all remaining screening centres, even if that is on a provisional basis while we wait for the in-service evaluation? By what date can that be achieved?

I conclude with a reflection that, as it stands, the science on this disease has changed faster than our health system has. The condition was, within living memory, untreatable, but now a test at birth can make the difference between a wheelchair and a childhood spent running around. The petitioners are not asking us to abandon evidence or caution; they are asking us to act with the urgency that international evidence now permits, and to make sure that no baby is left behind simply because of where they are born. I look forward to contributions from other Members and to the Minister’s response.

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[Robbie Moore (Keighley and Ilkley) (Con)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this important debate on behalf of the Petitions Committee, of which I am proud to be a member.

I am grateful to everyone who signed this petition and I pay tribute to the lead petitioner, Jesy Nelson. She has used her personal experience and public platform to raise awareness of spinal muscular atrophy. We know that it is a rare neuromuscular genetic condition that causes muscle weakness, movement problems, and difficulties with breathing and swallowing, as well as tremors, and bone and joint problems. Although those symptoms are most often noticed in babies and toddlers, they can also start in teenagers and adults. This extremely cruel disease has touched many people across the country and beyond. That is evident, given the simple fact that the petition has nearly 150,000 signatures, including that of my constituent Nasser Iqbal.

Nasser’s daughter was diagnosed with SMA type 1, the most severe form, three months after birth. She is unable to walk or eat due to nerve damage caused by her condition being left undiagnosed and therefore untreated in the first few months of her life. We know that every year in the UK, 48 babies are born with spinal muscular atrophy, with 60% having SMA type 1.

Once symptoms begin, damage to motor neurones cannot be undone. However, there is clear evidence that babies diagnosed before symptoms appear have significantly better health outcomes, with many able to reach developmental milestones that would otherwise not be possible. Earlier intervention would have made a huge difference to Nasser’s daughter. I am proud to speak in this debate on her behalf, because she and many other young people are impacted by the absence of early screening. That is why the petition calls on the Government

“to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test”

so that every baby is

“screened at birth to allow early diagnosis and access to life-changing treatment.”

Although screening for SMA in newborn babies is currently not recommended by the UK National Screening Committee, it has confirmed that an in-service evaluation of newborn screening for SMA will start in October 2026. However, the plans will include only seven of the 13 regions, which, as many Members have said, leaves approximately 163,000 babies without screening until as late as 2030 or 2031.

I am disappointed that one of the areas not included in the ISE of newborn screening for SMA is West Yorkshire, and I am extremely concerned that it will leave my constituents across Keighley and Ilkley without access to this potentially lifesaving screening, despite the ever-growing need for it. Yorkshire has 1.5 times as many patients with SMA compared with national figures; in the last three years alone, the regional neuromuscular service in Leeds has diagnosed 10 infants with the most severe form of SMA. Two tragically died within their first year of life and two have survived, but are living with significant and lifelong disability. Neither child can stand or walk independently. They require night-time respiratory support and are unable to feed themselves without assistance. In comparison, the children diagnosed and treated pre-symptomatically have achieved their expected motor milestones, and they are sitting and walking as expected for their age.

I pay tribute to the Leeds teaching hospital for reaching out to me before this debate. In particular, I thank Dr Anne-Marie Childs and her team of paediatric neurologists, who asked me to tell the Minister that we cannot be in a scenario where not every new-born baby in the UK has access to early diagnosis and life-changing treatment. I therefore call on the Minister to make sure that West Yorkshire and my constituents across Keighley and Ilkley are included as part of the early screening process.

[Munira Wilson]

The hon. Gentleman and the hon. Member for Sunderland Central (Lewis Atkinson) have eloquently and powerfully laid out the ethics of leaving out some children from screening, as well as the deep unfairness those children face in not being screened. Is there not also a question of evidence? When we are talking about a rare disease, the numbers are so low that it makes sense to include the whole of England in what is essentially a clinical trial being run by the NHS. If we need a control arm to compare data against, there will be historical data for the children who were not screened and treated too late. I am genuinely perplexed why the Government have not included every testing centre or every laboratory in this trial in the in-service evaluation. Does the hon. Gentleman agree?

[Robbie Moore]

I absolutely agree with the hon. Member. The reality is that, when dealing with such rare diseases, we are better casting the net far and wide to get as much data as possible. That was one of the points made to me by the Leeds teaching hospital. Dr Anne-Marie Childs is advocating for West Yorkshire to be included as part of the early screening process because, at the moment, it is a postcode lottery. Whether someone has access to early screening depends on wherever they happen to be born. The data collection would feed into national reassurance that the Government should be focusing on this issue. It pains me to say that right now a child born in my constituency of Keighley and Ilkley in West Yorkshire does not have access to early screening.

SMA is a debilitating condition and, although it cannot be prevented, the outcomes are significantly better for babies who are diagnosed early. Looking at the progress made in Scotland, which began screening new-born babies for SMA in March based on in-service evaluations, I urge the Government to ensure that no child is left behind and that we roll out screening for every child, no matter where in this country they are born.