Health Secretary Wes Streeting questioned on lack of newborn test for spinal muscular atrophy (SMA) to stop more parents from going through what Jesy Nelson is
Wes Streeting has told how he struggles to look parents like Jesy Nelson in the eye over the lack of newborn screening for a devastating muscle wasting disease.
The former Little Mix singer and the Mirror are calling for a check for spinal muscular atrophy (SMA) to be added to the NHS heel prick test. Currently babies are only diagnosed once irreversible muscle deterioration has occurred leaving many in a wheelchair for life.
Health Secretary Mr Streeting said he has asked the UK National Screening Committee whether it would advise modifying a planned NHS pilot to include screening all babies for the condition. Currently part of England will leave babies untested so they can act as a “control group” and their health outcomes monitored so they can act as a comparison.
READ MORE: Three babies die each year from muscle wasting SMA as NHS delays £5 blood testREAD MORE: ‘Don’t let us down Wes Streeting – your decision on SMA will change children’s lives’
Mr Streeting told the Mirror: “We are actively looking at this but it’s not straight forward. It helps that there is a trial up and running but we know, and Jesy has challenged us on this, that trial when up and running won’t screen all babies. And there is a risk that other parents will have to go through what Jesy is going through.
“One of the things I’m looking at is that given we have a trial that is planned and ready to get going, could we expand the reach of that? It’s very hard, in the eyes of someone like Jesy, who knows that had her girls been diagnosed more quickly, their outcomes and their opportunities in life could be dramatically different. It’s very hard to look a mum in the eyes when she is going through something like that and tell her that the situation we have got now is acceptable – because it isn’t.”
The Mirror is campaigning for a £5 blood test for SMA to be added to the NHS heel prick test on all newborns. 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 takes place.
Jesy, who has been told her twins will probably never walk, described how her girls were diagnosed with the condition only at six months, despite repeated visits to the GP and healthcare visitors checking in on them. Mr Streeting said: “We’re looking at that now and as soon as I’ve got more action to report I’ve promised to Jesy I’ll report back to her, I’ll report back to the SMA community and I’ll report to the Mirror, because your campaign is not lost on me.”
Babies not diagnosed and treated soon after birth can need a wheelchair and sometimes a machine to help them breath and feeding via a tube directly into their stomach. Current plans for an NHS 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”.
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.
The plan for an NHS pilot 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.
Experts insist there is enough evidence internationally to justify immediately rolling out SMA screening for all newborns. The US and most of Europe already screen for SMA. The Mirror asked Mr Streeting what the argument was against screening all babies for SMA. He responded: “As ever, with any decisions about screening programmes, we will always follow the evidence, and we always follow the recommendations.
“Clearly action is planned in this area which is why we have the screening pilot in the pipeline, but I’m challenging the team to see if we can go further. I also want to assure families that are affected by SMA that it’s not just Jesy’s voice we’ve heard. I have been really moved by so many of the families that have been in touch directly.”
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.
MR Streeting added: “One of the reasons I feel personally committed to action in this area is that I’ve got in my own constituency a wonderful family with a little girls, who came to me when she was still a baby, when she had a life expectancy of just two years old. She was on a clinical trial for one of the now-approved drugs and she is now a very happy girl, full of life. She is getting involved in acting and doing amazing things that many people would have thought impossible when she was born.
“I feel this responsibility to ensure that all kids, whatever their background and whatever illness is thrown at them in life, are able to not just survive but thrive. And I feel a personal responsibility to not just Jesy, but to the SMA community that have called for action, to make sure that I leave absolutely no stone unturned, and make sure I do everything I possibly can to make sure we get faster access to diagnosis.”
Giles Lomax, chief executive of SMA UK, said: “We are encouraged to see the commitment from the secretary of health to both expand and expedite screening for SMA across the country. Every moment really matters for these children as each month another four babies are diagnosed with SMA.. that clock is ticking until screening is introduced.”
Disclaimer : This story is auto aggregated by a computer programme and has not been created or edited by DOWNTHENEWS. Publisher: mirror.co.uk
