Advocacy for Newborn Screening for SMA
Advocacy for Newborn Screening for SMA
Last updated: 13th August 2026
There is clear evidence that early diagnosis and treatment of SMA leads to better outcomes. Early detection of the condition is critical. This can be done with a simple blood test.
The NHS offers newborn blood spot screening. This uses a heel prick to take blood when a baby is 5 days old. It currently looks for 10 rare but serious conditions. The UK National Screening Committee’s (NSC) decides which conditions can be screened for.
They have now set up a study for up to 3 years in England called an In-Service Evaluation (ISE). This is to help them decide if SMA should be permanently added to the heel prick test.
Latest news:
1st October 2026: Newborn Screening for SMA beins in Brimingham. Read more here
16th July 2026: As part of the ISE, the remaining six newborn screening laboratories in England will begin screening from October 2027. By then the other seven labs in England will all be screening. The roll out of these seven starts in October 2026.
20th July 2026: Organisations invited to collaborate in expansion of SMA screening evaluation in England >
By October 2027, every newborn baby in England will have access to screening for SMA. Scotland started screening in March 2026. They will add their data to the ISE data.
While this is a major milestone, our work is not yet done. We will continue working with partners in Wales and Northern Ireland to ensure every baby across the UK can benefit from newborn screening for SMA.
Unless progress is more rapid, the NSC’s final decision on whether to recommend NBS for SMA won’t be until 2030/31.
Our Advocacy & Campaigning Diary
We have been advocating for newborn screening for SMA in the UK since 2013.
In October 2018 the NSC decided not to add SMA to the newborn bloodspot testing programme. At this time there was just one disease-modifying treatment. One of the reasons for the decision was that, at that time, there was no evidence of its effectiveness in children without symptoms.
By 2020 the treatment landscape had started to change. Clinicians and patient groups formed the Newborn Screening Alliance.
By December 2021 there were three disease-modifying treatments. There was clinical trial evidence that they needed to be given early for the best outcomes.
The SMA NBS Alliance of clinicians and patient groups lobbied politicians and decision-making bodies for the NSC decision to change and for SMA to be added to the newborn blood spot test.
Funding for the Alliance ended in early 2025 but clinicians and patient groups continued to campaign and advocate at every possible opportunity.
Letter to the Lancet
On 7 February 2025, the frustrations of all were set out by leading SMA clinicians. Their powerful letter, published in the world-leading medical journal The Lancet, presented a stark message:
The letter highlighted the very different outcomes for babies born in the UK compared with those born in countries where newborn screening for SMA is already in place.
The clinicians described how:
- babies with SMA type 1 in the UK are still dying
- those who survive cannot walk
- many rely on ventilatory support and tube feeding
By contrast, in countries such as Belgium, where babies are diagnosed through newborn screening and treated early:
- all babies survive
- all are able to walk
- none rely on ventilatory or nutritional support
This is not because treatments are different, it is because timing is different. For SMA, early diagnosis saves motor neurons that cannot be replaced. Once symptoms appear, damage has already been done.
Worldwide Evidence and Action
The ‘real-world’ research paper published on 8th April 2024 also confirmed the Clinical Effectiveness of Newborn Screening for SMA >.
For the latest update on screening programmes in Europe see the:
July
16th: The Ministry of Health announced that as part of the ISE, the remaining six newborn screening laboratories in England will begin screening from October 2027.
June
Following discussions with the former Secretary of State, Wes Streeting we welcomed the news that the ISE will begin screening for SMA in October 2026, significantly earlier than the previously expected timeline of January 2027.
However, this would only cover around 72% of babies in England starting on a phased roll out.
On the 22nd June 2026, the petition to add SMA to newborn screening in England was debated in Parliament.
You can watch the debate here.
March
NHS Scotland announced they will add SMA to its newborn screening programme in an evaluative and research capacity, from the 23rd March 2026. This followed a huge amount of behind the scenes work by clinicians and others and advocacy by SMA UK,
February
6th: Jesy launched a petition calling for faster action. Within 48 hours it had reached the threshold needed for a Parliamentary debate. It is still open for more signatures:
Review the evidence and fund the addition of SMA to the Newborn Screening Test >
We were also very aware of the impact of all this media attention on the SMA Community and thanked Luis Canto E Castro for writing about this in our guest blog:
When SMA hits the headlines: Holding space for parents and adults in our community >
January
The Department of Health and Social Care published the following statement:
20th: ITVX invited our CEO, Giles Lomax, alongside Jesy, to meet with Wes Streeting. The 15-minute interview shown on ‘This Morning’ built on Jesy’s appearance on the programme on 7th January.
In a 45-minute closed-door meeting between Giles, Jesy, and Wes Streeting, Giles presented a clear roadmap for NBS for SMA for all babies in the UK. This outlined the actions the Secretary of State could take to accelerate progress.
Overall, the meeting was positive, and the Secretary of State expressed a clear commitment to making change as soon as possible.
5th: Jesy Nelson, of Little Mix fame, shared publicly that her twins had been diagnosed with SMA Type 1. Following this there was significant media attention and increased public awareness.
September: Scottish Government announces they will be adding SMA to their newborn screening programme >
May
Newborn Screening Alliance funding ends but work continues
Founded in 2020, the UK SMA Newborn Screening Alliance brought together a group of expert clinicians, academics and patient organisations dedicated to securing the earliest possible introduction of newborn screening (NBS) for SMA in the UK.
Chaired by Professor Laurent Servais, Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre, it comprised leading SMA experts in the clinical and academic community and patient organisations, including Spinal Muscular Atrophy UK and Muscular Dystrophy UK.
The Alliance was focused on the following objectives:
- Contribute to the development of evidence on NBS for SMA and provide expert input to the UK National Screening Committee
- Identify opportunities and advocate for an accelerated recommendation on SMA NBS
- Ensure that the wider SMA community is informed about progress towards introducing NBS and has the opportunity to support and be involved in advocacy
- Support wider efforts by the rare disease community to improve the UK process for expanding newborn bloodspot screening so that more children born with rare diseases are able to benefit from earlier diagnosis and treatment
SMA UK and MDUK jointly secured funding for this work from Novartis and Roche as well as contributing their own funds.
This included funding Alice Fabre in the the part time post of Project Manager. Alice tirelessly and brilliantly drove the Alliance’s work from 2023 until now.
Though funding has now ended, Alliance members continue to pursue its objectives. Many are now taking part in the ISE/SMA Partnership sub-groups and Board.
March
The Oxford – Thames Valley – Wessex NBS for SMA Study
By March 2025 all results from this 2022/24 research study had been collected.
The study aimed to see if newborns in the UK could be screened for SMA and therefore start treatment before symptoms developed. By the end of October 2024, the study had recruited 32,274 participants.
They study results will help with the National Screening Committee’s decision on whether to include SMA as part of the standard UK Newborn Screening.
5th- 9th February: Every Moment Matters Westminster Hall Exhibition
Catching the eye of the Westminster Hall Advisory Group, the Every Moment Matters report was featured in a Westminster Hall Exhibition. Westminster Hall is a thoroughfare for all MPs and Ministers working in the Houses of Parliament, so it was a fantastic opportunity to raise awareness of the desperate need to speed up the decision to implement newborn screening for SMA in the UK.
SMA UK’s CEO Giles Lomax, and the families living with SMA who were featured in the report attended the opening ceremony, and met with MPs, introducing them to the children living with SMA and sharing their stories.
8th November: Every Moment Matters campaign report launched
Every Moment Matters: Implementing newborn screening for Spinal Muscular Atrophy in the UK
This policy report was launched today at a parliamentary roundtable meeting sponsored by Liz Twist (Labour MP for Blaydon and Chair of the All-Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions). The report was informed by input from experts across the SMA and rare disease community. It was commissioned by Novartis Pharmaceuticals and supported by SMA UK.
The report explores the opportunities for supporting the best possible outcomes for all those affected by SMA, and how doing so can contribute to the UK’s wider rare disease and life science ambitions.
SMA UK, coordinated the collection of several family case studies for the report. These show the impact late diagnosis and treatment has on the lives of children living with SMA and their families. There is also a statement included from SMA UK’s CEO Giles Lomax.
Today’s meeting was attended by a number of families from the SMA Community; it was opened by Giles. There were presentations from expert speakers who spoke about the current clinical pathway for people with SMA; and progress that has been made to date towards the introduction of newborn screening. There was a group discussion, where attendees shared their perspectives on how the SMA, and rare disease community, can support the urgent introduction and implementation of newborn screening for SMA across the UK.
4th August:
In-Service Evaluation Planned for NBS >
June – August
Petition to introduce NBS in the UK gained 11,718 signatories. The Government responded and confirmed that this work will take place in 2021/22.
26th March
European Newborn Screening Alliance launches Whitepaper on the need for NBS programmes to include SMA.
31st August
SMA Europe and Partners launch The European Alliance for NBS >
14th February
SMA Experts recommend newborns who have 2, 3 or 4 SMN2 copies should have immediate access to treatment >
2020: The UK Newborn Screening Alliance is formed
23rd July:
Genetic Alliance UK launches ‘Fixing the Present, Building the Future – NBS for Rare Conditions’. SMA UK was a participant in the workshop that led to this report.
18th February:
UK National Screening Committee does not recommend carrier or NBS for SMA >
SMA UK supports Dr Felicity Boardman’s ‘Imagining Futures’ Research into views of NBS for SMA held by people affected by SMA. There are 337 respondents and 36 in depth interviews.
Imagining Futures – ongoing work