Baby first patient to be treated by NHS with ‘world’s most expensive drug’

A baby aged just five months old has been treated with the “world’s most expensive” drug which could be potentially lifesaving for the small child.

Arthur Morgan, who has spinal muscular atrophy, became the first patient in England to receive the treatment on the NHS after he was diagnosed with the condition earlier this month.

He received the one-off gene therapy at Evelina London Children’s Hospital on May 25, reports the PA.

His father Reece Morgan, 31, said he “broke down” when he heard the news that his son would receive the treatment, which has a list price of £1.79 million per dose.

Spinal muscular atrophy (SMA)is the leading genetic cause of death for children but until two years ago there was not available treatment for children with the condition.

The US gene therapy Zolgensma, is called the most expensive drug in the world but babies could potentially have the ability to sit, crawl and walk afterwards.

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

Baby Arthur, who was born six weeks premature in December, underwent the gene therapy infusion last week after being diagnosed with SMA less than three weeks earlier.

Arthur’s dad who works as a self-employed plasterer, 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.

“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.”

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Babies born with Type 1 SMA, which is the most common form of the condition, experience progressive muscle weakness, loss of movement, difficulty breathing, and have a life expectancy of just two years.

Four specialist NHS centres have now been commissioned across the country to administer the treatment, including Evelina London Children’s Hospital, where Arthur was treated.

The other sites are Manchester University NHS Foundation Trust, Sheffield Children’s NHS Foundation Trust and University Hospitals Bristol and Weston NHS Foundation Trust.

Dr Elizabeth Wraige, consultant paediatric neurologist at Evelina London Children’s Hospital, said: “This treatment will bring hope to families affected by SMA who have fought so courageously against it.”

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