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Wes Streeting has been told a decision whether to test all babies for a devastating muscle wasting condition ‘is now a political decision’ and is on him.

The Health Secretary met Giles Lomax who is chief executive of charity SMA UK on Monday alongside former Little Mix singer Jesy Nelson. Both Giles and Jesy have twins who were diagnosed late with spinal muscular atrophy (SMA). Charity boss Giles has today issued a direct appeal to Mr Streeting in the Mirror - but warns “every month of delay means more babies are diagnosed too late”.

SMA patients have a fault with their SMN1 gene which produces a protein to maintain the health of the nerve cells helping transmit signals between the brain and spinal cord and the muscles. Without it these nerve cells, called motor neurons, die off and so the muscles do not get the message to move, and waste away.

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Three treatments currently available on the NHS can either correct the faulty gene or provide a replacement for the key protein so that muscles do not die off. They are effectively a cure - but only if administered at birth before irreversible muscle damage.

An estimates 33 SMA babies diagnosed too late each year are being left needing a wheelchair in the UK. In more severe cases they will need a machine to help them breath and need feeding via a tube directly into their stomach.

Mr Streeting told the Mirror he has “asked his team” whether an NHS pilot to screen some newborns for SMA could be expanded to that all get the blood check as part of the routine NHS heel prick test.

Current plans for the pilot would see one third of newborns in England - around 163,000 a year - not be tested so they can act as the “control group” to compare outcomes with to see how effective newborn screening for SMA is - a decision experts have branded “unethical”.

Giles Lomas told the Mirror: “Every month, four babies are diagnosed with SMA and for them the clock is ticking every single day. Under the current NHS screening pilot, where a baby is born determines whether they are screened for SMA or not. Babies in London are, while babies in places like Bristol are excluded. That simply isn’t fair.

“We must move to UK-wide newborn screening so that no baby is missed because of their postcode.

“The SMA community has presented the evidence, the data and the real-life impact on families. This is no longer a clinical question, it is a political decision, and it now sits with Health Secretary, Wes Streeting.

“Since Jesy shared her story about her twins, four more families have come forward to tell us they have received the same devastating news. This decision cannot wait. Every month of delay means more babies are diagnosed too late.

“We are urging Wes Streeting to act now, and not to let down the families who have campaigned for years to make newborn screening a reality.”

The UK National Screening Committee (UKNSC) first decided not to add SMA to the newborn screening programme in 2018 but since 2019 three major treatments have been made available on the NHS which can virtually eradicate the condition.

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Despite this, the UKNSC decided against immediate rollout of a £5 blood test to check for the condition at birth.

Instead it is planning an NHS pilot so 404,000 newborns in just over two-thirds of England will be screened annually - but not 163,000 children who live in certain areas of the country to be excluded. This is so the UKNSC can compare outcomes for children before making its recommendation to government.

It means full screening rollout is unlikely before 2031 on the current schedule. However NHS Scotland has just decided to go ahead with newborn screening for SMA and will add it to their routine heel prick test from the spring. Babies in Wales and Northern Ireland will not be screened under the current plan.

SMA UK argues that an NHS pilot which does not screen all babies for SMA is unnecessary as international evidence is there that screening saves lives and taxpayers’ money.

Most developed nations including the US and most of Europe already screen for SMA at birth.

In a statement given to the Mirror, Wes Streeting said: “Jesy and other campaigners have made a powerful case for doing more on screening and there is some good news on this.

“Planning for a large-scale trial across the NHS is underway, where hundreds of thousands of babies for SMA will be screened from next year to help build the evidence base needed to support a national screening programme.

“I have asked my team to look at whether this evaluation can start sooner, and whether it can be expanded to involve all babies, rather than two thirds as currently planned and will be reporting back to the SMA community on this.

“I hope families can feel reassured that progress is being made on this, with more treatments available for spinal muscular atrophy than ever before – we want to see more children with SMA not just surviving but thriving.”