Spinal Muscular Atrophy: Newborn Screening Test
Debate between Amanda Martin and Lewis Atkinson(1 month, 1 week ago)
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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.
Amanda Martin (Portsmouth North) (Lab)
Thank you, Mr Mundell, for your chairmanship. I, too, pay tribute to the determination of Jesy Nelson and all the parents and young people who have been campaigning for this. I was alarmed to discover from parents this weekend that Portsmouth will not be included in the roll-out of the SMA screening this October. That means that babies born in my city will miss that early diagnosis and will face potentially devastating conditions that early treatment might well have saved them from. My hon. Friend the Member for Portsmouth South (Stephen Morgan) and I have written to our integrated care board to find out why Portsmouth is not included and whether it will change its mind.
Lewis Atkinson
My hon. Friend is absolutely right, and I will come on to talk about the potential postcode lottery. I do not believe it is a decision for individual ICBs to make, but a national decision that includes the UK National Screening Committee, which I will come on to.
The screening that I have described is already in place in dozens of countries. Across Europe, 75% of children are screened at birth and since 2024, every newborn in the United States and Canada has been screened. Ukraine managed to begin newborn screening for SMA in the midst of a full-scale Russian invasion. Given that, the petitioners simply ask, “Why is this screening not in place universally here too?”
Lewis Atkinson
My hon. Friend is absolutely right. This is a matter of pace and of asking, “When?” not “If?” or “How?” because both those questions have already been answered.
I turn to the Government’s response. The previous Secretary of State for Health, my right hon. Friend the Member for Ilford North (Wes Streeting), met Jesy Nelson, the petitioner, in January. The Government accepted the case for an in-service evaluation and brought the date for that live NHS trial forward from January 2027 to October this year, when screening will begin to be rolled out. I, the petitioners and others welcome that, though there is a sadness that it has taken so long to get to that point.
We must, however, be honest about where that decision leaves us. As my hon. Friend the Member for Bootle (Peter Dowd) alludes to, the real argument now is about pace and fairness. The evaluation is funded. It will run at seven of England’s 13 screening laboratories, covering around 72% of births. The remaining six sites, which include the site that covers the constituents of my hon. Friend the Member for Portsmouth North (Amanda Martin), and which account for the remaining 28% of babies born in the UK every year, are not at present in the plan. That does not seem to be an accident but the design.
Put in human terms, of the 48 babies born with SMA in England each year around 35 would be diagnosed by the introduction of SMA screening in this evaluation but 13 would not: there would be 13 babies a year born with the same condition but on the wrong side of an arbitrary line that they did not choose who will go undiagnosed until damage is done. A baby born in one postcode will be screened, treated early and may walk, but a baby born in another postcode in the same week will not, and by the time anyone knows it may be too late. That is the postcode lottery that Jesy told me about, and which deeply concerns her, in its starkest form.
It is not about a difference in waiting times but about whether a child walks, breathes unaided or feeds normally for life. That is why Professor Muntoni’s assessment needs to be heard. He asked me specifically to put this on the record: he described a trial that deliberately leaves some babies unscreened to serve as a comparison group as—his word—“unethical”. We are withholding from some children a diagnosis that we are fully capable of making and that we know will help to shape their lives in order to gather data on something that Professor Muntoni considers already internationally proven. That is the view of not just one eminent clinician, I am told, but the wider SMA clinical community.