Spinal Muscular Atrophy: Newborn Screening Test Debate
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Sadik Al-Hassan
Main Page: Sadik Al-Hassan (Labour - North Somerset)Department Debates - View all Sadik Al-Hassan's debates with the Department of Health and Social Care
Spinal Muscular Atrophy: Newborn Screening Test
Sadik Al-Hassan Excerpts(1 month, 1 week ago)
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Sadik Al-Hassan (North Somerset) (Lab)
It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for his impressive eloquence. Watching this debate today is my fantastic communications officer, who has spinal muscular atrophy and whose insight on this issue has been incredibly valuable. SMA is a life-threatening genetic condition where timing is everything. Without early diagnosis and treatment, irreversible damage occurs within the first months of a baby’s life. Left untreated, around 90% of babies born with severe SMA will die before their second birthday or require permanent ventilation just to survive.
However, when SMA is caught through newborn screening before symptoms even appear, that trajectory can change completely. Early treatment can halt the disease in its tracks and provide children with opportunities they would not have otherwise had. That is why I welcome the news of the screening that will begin in parts of England this October.
Under the current plan, however, screening will reach only two thirds of England, which leaves some newborns in England excluded. Many of my constituents in North Somerset rely on Bristol hospitals, such as Southmead, where my two children were born, which are not among those rolling out screening. Babies born there will belong to the 28% or so missing out.
This really is a postcode lottery, plain and simple. A baby’s chance of early diagnosis should not depend on their parents’ address. As we heard, Scotland has now launched a full national programme, and I believe that the Republic of Ireland has done the same. We are falling behind our neighbours while our children’s futures are decided by geography.
I spent nearly 20 years working as a pharmacist. In that time, I developed a particular instinct: if a disease can be treated, you treat it, and if a harm can be prevented, you prevent it. That instinct does not leave you. I agree that the current trial raises serious ethical concerns. When I consider this issue, the question I keep returning to is straightforward: where is it possible to prevent irreversible disability, why would we not act for every child without delay? Every baby, wherever they are born in the UK, deserves the same chance at a healthy life.