'It's going to give him a better future' - Family of Ipswich boy overjoyed as drug is approved
PUBLISHED: 11:13 15 May 2019 | UPDATED: 19:27 15 May 2019
The life of an Ipswich boy is set to be transformed after the NHS reached an agreement was reached on life-enhancing drug.
The family of seven-year-old George Woodward has been left shocked by news that an agreement had been reached on the drug known as spinraza or nusinersen.
George, a pupil at Whitehouse Community Primary, has the condition known as spinal muscular atrophy (SMA) which sees his muscles gradually waste away.
His family have been fighting for a number of years to have the drug, which could stabilise his condition, approved.
NHS England revealed on Wednesday that it had reached an agreement with the drug's producer Biogen to set up a time-limited period trial for the drug to allow further data to be collect on its effectiveness.
Should this be successful, NICE would then be able to formally approve the treatment for use by eligible patients.
"I didn't think we would ever see this day. It's amazing," said Laura Barber, George's mum.
Ms Barber and George's dad Lee had stayed up past midnight to find out the NHS's response and were left shocked by the news.
"I really didn't expect it," said Ms Barber, "We just thought that it might be approved for type one. It's the best possible outcome.
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"I cannot describe the feeling. It's just amazing. Everyone is able to have a bright future now."
The parents then told George and his sister Ivy the news on Wednesday morning
"Ivy said to us 'George is going to be stronger!" said Ms Barber, "It's just very surreal.
"It's going to give him a better future and we are just looking forward to see how he is going to do.
"It's been such a long battle," said Ms Barber, "it's been over two years since it was approved in America and we were just going nowhere."
There had been concerns last August that the drug would never be made available after drugs watchdog NICE recommended against approving spinraza.
At the time the authority said that it was concerned about the price of the drug as well as its long terms effects.
Spinraza has already been approved for use in a number of different countries including the US and Scotland.
The treatment will be mad available immediately for youngsters with the most severe form of SMA (type one) with provisions being made for older babies, children and young adults with types two and three in the next few weeks. Simon Stevens, NHS England chief executive, said: "This promising treatment has the potential to be life-changing for children and their families.
"The NHS has now reached one of the most comprehensive deals in the world, which allows us to assess real-world evidence of its long-term benefits.
"This latest deal coming on the heels of a number of other recent successful negotiations demonstrates that there is no reason for other companies not to show equivalent flexibility in order to benefit NHS patients, taxpayers and indeed themselves."