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But watchdog Nice yesterday announced it is lifting the ban to make the drug available to all patients who need it after a long battle by campaigners. Spinraza was made available on the NHS in 2019 for patients with a rare muscle-wasting disease but only if they could walk.
Mr Ogborne, who is studying philosophy and psychology at Bath Spa University, has spinal muscular atrophy, which affects the spinal cord nerves, and needs Spinraza to stop it deteriorating.
He said: “When my mum and dad found out we were all just so happy, we were crying and hugging together and then we called my grandparents and other family and it was just so nice.
“It was long overdue and such a relief.”
Spinraza does not cure the disease but can slow its impact and health chiefs describe it as a “life-changing” drug.
Labour MP Kerry McCarthy, who has repeatedly raised Jake’s case in the House of Commons, said: “This is brilliant news for Jake and his family. It’s been a tough few years and I’m so happy for them.
“It was an unfair and arbitrary decision to exclude those like Jake in the first place and we should never have had to fight for justice, but I just hope now Jake can get the treatment he needs as soon as possible.”
Between 500 and 2,000 children and adults are estimated to have spinal muscular atrophy.
The condition weakens muscles and causes problems with movement, breathing and swallowing.
John Stewart, the national director of specialised commissioning at NHS England, said: “It is fantastic news that the NHS is now able to offer many more patients this potentially life changing treatment – the first of its kind to tackle the causes of spinal muscular atrophy.”
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