Charity boss Giles Lomax has enlisted former Little Mix Singer Jesy Nelson to demand a historic change to check all newborn babies in the UK for spinal muscular atrophy (SMA)
A man leading the campaign to help babies with the devastating muscle wasting disease SMA says Britain is at a “pivotal moment”.
Giles Lomax’s seven-year-old twins Finn and Zara have spinal muscular atrophy (SMA) which the Mirror is campaigning to have all babies tested for at birth. Health Secretary Wes Streeting is putting pressure on the UK National Screening committee to consider giving the blood test to all newborns
Giles and his wife Becky, from Edinburgh, received the devastating diagnosis of the Type 2 form of the disease only after they were 15 months old. Three NHS treatments can either correct the faulty gene or provide a replacement for the key protein so that muscles do not die off and are effectively a cure – but only if administered at birth before irreversible muscle damage.
Since his twins’ diagnosis, Giles became the chief executive of the charity SMA UK, which has now been around for 40 years, campaigning for research and supporting families affected by the disease. It has been a long journey for the 37-year-old but writing in the Mirror today, Giles explains why the change he and other SMA families have campaigned for for so many years cannot come soon enough.
Giles Lomax – CEO of SMA UK
For more than a decade, SMA UK has campaigned relentlessly for Spinal Muscular Atrophy (SMA) to be included in the newborn heel prick test. A campaign driven by love, urgency and far too many stories of heartbreak and yet, for years until very recently, our advocacy felt like banging on a closed door.
The most difficult milestone occurred in 2018, when the UK National Screening Committee (UK NSC) declined to recommend SMA for national screening. At that time, the rationale was painfully rooted in a lack of evidence available on treatments for presymptomatic babies.
The committee concluded that, under the criteria of the day, inclusion could not be justified. However, medicine has not stood still, and neither have families. In the years since, life-changing therapies such as nusinersen, risdiplam and Zolgensma gene therapy have fundamentally transformed the outlook for children with SMA.
The evidence is now overwhelmingly clear: infants identified and treated before symptoms emerge can achieve milestones once considered impossible. For the SMA community, the stakes are immediate and deeply personal.
Many families recount the trauma of watching their child lose strength before their eyes while waiting weeks or months for a diagnosis that could have come in days. It is the difference between sitting independently or being wheelchair-dependent; between breathing and eating unaided or relying on life-support and feeding tubes. No parent should be made to watch that unfold.
The UK now finds itself at a pivotal moment. After years of advocacy, the UK NSC is revisiting its 2018 decision and moving toward starting an in-service evaluation of newborn screening for SMA. Scotland is leading the way introducing SMA screening from March 23rd a game changing moment. But it shouldn’t come down to what postcode you live in.
It is no longer a question of “if” but “when” the rest of the UK will follow. With effective treatments a reality and evidence mounting of dramatically improved outcomes with early diagnosis, the ethical imperative is undeniable
Every baby deserves the chance to start life with the best possible shot at health. Presymptomatic screening isn’t just good policy it is a lifeline we can no longer delay!
The Secretary of State’s commitment to accelerating and expanding screening is a welcome step but, every month four babies are diagnosed with SMA, we cannot afford further delay.
Every moment matters to these babies and we must act now to change the future for these children forever.
