Spinal Muscular Atrophy: Newborn Screening Test

Luke Taylor 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.