Spinal Muscular Atrophy: Newborn Screening Test

Debate between Lewis Atkinson and Munira Wilson

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.

--- Later in debate ---

[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.