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5-month-old first in England to receive pioneering new drug on the NHS for spinal muscular atrophy

A five-month-old baby with spinal muscular atrophy (SMA) became the first NHS patient in England to be treated with a potentially life-saving new gene therapy.

Arthur Morgan was diagnosed with SMA in early May, and received the one-off US-developed gene therapy, Zolgensma, on 25 May at Evelina London Children’s Hospital.

SMA is a genetic condition in which muscles progressively get weaker, causing problems with movement that impact walking, swallowing, speaking and often breathing. The condition gets worse over time, but there are treatments to help manage the symptoms. 

SMA is the leading genetic cause of death for infants, and until two years ago there were no treatment options available for the condition.

The new US gene therapy Zolgensma could help babies develop the ability to sit, crawl and walk after treatment, and can also prevent them from having to be put on a ventilator.

Zolgensma has been called the most expensive drug in the world, at a list price of £1.79 million per dose.

The treatment was made available on the NHS in March after the health service struck a deal with American manufacturers Novartis Gene Therapies.

Arthur’s father, Reece Morgan, described how he noticed Arthur started to slow down with his movements after two months of being born. He took his son to the hospital after a GP said “age would correct itself”.

The earlier Zolgensma is used for SMA the better, with pre-symptomatic treatment shown to give the very best possible outcomes. Early diagnosis and treatment is vital to success rates and campaigners are calling for newborn screening for the condition to be introduced in the UK.

Morgan also said: “When we found out that Arthur would get the treatment, and be the first patient, I just broke down”.

“It had been such a whirlwind few weeks, filled with lots of anxiety and adjustment, as we learnt about his condition and what it might mean for him and our family”.

He went on: “We still don’t know what the future will hold, but this gives Arthur the best possible chance to give him the best possible future”.

NHS chief executive Sir Simon Stevens also said: “It is fantastic news that this revolutionary treatment is now available for babies and children like Arthur on the NHS”.

“Zolgensma is the latest example of the life-changing therapies that the NHS is now routinely using to transform the lives of patients and their families”.

Secretary for Health and Social Care Matt Hancock said: “I am so glad young Arthur can access this potentially life-changing treatment on the NHS. I hope it grants his family and many others renewed hope that more children’s lives can be transformed”.

“It is wonderful to see the NHS focusing on providing the very best treatments for children with conditions such as Arthur’s. If we invest in such medical innovations now, we will only continue to reap the societal rewards further down the line, as Arthur and his family already are. We wish them the very best”.

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