Spinal Muscular Atrophy: Newborn Screening Test

Liz Twist Excerpts

Monday 22nd June 2026 Westminster Hall

[Liz Twist (Blaydon and Consett) (Lab)]

It is a pleasure to serve with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for opening this vital debate on behalf of the nearly 150,000 people who signed the e-petition. I am glad that, with the help and promotion of Jesy Nelson, who brought the petition forward, we are able to highlight the need for preventive action to protect children from the impact of SMA.

In my work with the all-party parliamentary group on genetic, rare and undiagnosed conditions, I closely supported the campaign for newborn screening for spinal muscular atrophy for many years. I praise the work of SMA UK and Muscular Dystrophy UK, which led the “Every Moment Matters” campaign along with Genetic Alliance UK to press for newborn screening for SMA. It is absolutely fabulous that Jesy Nelson has been able to put focus on the issue and to press the former Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), to take real action, although it is very sad that she had to learn about the devastating impact of SMA from her own heartbreaking experience.

With SMA, time is muscle. The condition causes rapid and irreversible neurodegeneration. By six months of age, an untreated baby with SMA type 1 will lose 95% of their lower motor neurons. Transformational treatments are available on the NHS, but we are diagnosing babies too late for them to receive the maximum benefit. I have seen the life-changing difference that early diagnosis made for a family in my constituency.

I want to talk about two brothers, Freddie and Louis. Freddie is a happy, social and determined young man who has hugely benefited from access to the lifelong treatment nusinersen. His family say that it saved his life and independence, but they still face challenges and costs in securing equipment to allow Freddie to have the freedom he needs and deserves, including by fundraising with the community for an all-terrain wheelchair that allows him to take part in as many activities as possible with his peers. Because Freddie was diagnosed with SMA, his younger brother, Louis, was screened for SMA and diagnosed before birth. As a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. Since getting that treatment, Louis has done well and is able to live his life free from the disease. That completely transformational treatment was available only to siblings, creating, as we have heard, an unacceptable health inequality where the wider population is denied the same chance of a healthy life.

[Luke Taylor (Sutton and Cheam) (LD)]

I was recently contacted by a constituent whose daughter was diagnosed with SMA type 1 at five months old and, in her own words, five months too late. Her child is now two and needs a wheelchair. She cannot sit or stand unaided. She depends on specialist equipment and multiple weekly visits and appointments. That is no way for a toddler to live. Does the hon. Member agree that families like my constituents urgently need the Government to fast-track the roll-out of a testing programme to all children in all areas to ensure the best possible outcomes for children affected by the condition?

[Liz Twist]

I certainly do agree. The test should be made available to everyone to prevent people from living with the effects of SMA that could have been diagnosed and treated.

As I was saying, it is important that we now have testing, but we must expand it to the whole of the UK very quickly.

[Amanda Martin]

Does my hon. Friend agree that we need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country? If we are one of the six areas that will not have testing or screening, the babies born in my city have less chance and are therefore less valued.

[Liz Twist]

I certainly agree with my hon. Friend’s point, which was also made by my hon. Friend the Member for Sunderland Central. All babies should have access to treatment. We know the clinical consensus is absolute.

In February 2025, leading clinicians published a letter in The Lancet contrasting the UK with countries that have screening programmes. In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. On the wider issue of newborn screening, a range of conditions could be the subject of testing, but we are behind the world on testing. Genetic Alliance UK and the APPG on rare, genetic and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four Governments across the UK to ensure that we do not miss the opportunity to give more children a better and a healthier life.

Returning to the issue of SMA screening, the UK National Screening Committee’s updated model from August 2025 confirms that introducing screening would prevent three early deaths and stop two babies from requiring permanent ventilation every single year. Crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies annually to live largely normal lives.

There is a rigorous financial case for acting now. Treating SMA pre-symptomatically reduces the need for lifelong mechanical ventilation and round-the-clock care. Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality-adjusted life years for each annual cohort of newborns diagnosed.

I was relieved by the Government’s announcement last month that the in-service evaluation for SMA screening will finally begin in England this October. However, the Government confirmed on 16 June that the evaluation will cover only part of the country. Specifically, it will launch in only the seven newborn screening laboratories that already have the required equipment. There must be a way of getting around that problem so that all our babies can be tested and receive appropriate treatment if necessary. The Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of its own screening programme in April.

We cannot accept a health system in which a baby’s chance of typical neuromuscular development depends entirely on the hospital in which they happen to be born. Will the Minister confirm whether the evaluation will be extended immediately to cover all of England, as well as Wales and Northern Ireland, for the sake of those children? We have the treatment, economic case and diagnostic tools; we must stop denying babies the chance of a healthier future.