Harrisons Fund

NICE Decision for England and Wales

19 Apr 2016

After last week's shattering news that the SMC have not recommended access to Translarna for children with Duchenne in Scotland, this week the news was much more positive from the National Institute for Clinical Excellence (NICE).

Alex, Harrison's Fund's Chief Executive, said;

"This week it was announced that NICE will provide a managed access scheme for Translarna. It's estimated this will potentially help slow the progression of this devastating disease for 50 young boys living with Duchenne in England due to the narrow label given. We have a total population of 2500 of boys with Duchenne in the UK who still desperately need an effective treatment. Harrison is one of those boys still left waiting. The reimbursement of translarna is a major step forward and one we welcome and have campaigned for but we still must keep fighting till we have a treatment for Harrison and all the other boys.

The number of people who have phoned me or messaged to congratulate us shows how much many taken Duchenne into their hearts and want to see Harrison have a treatment but sadly we must continue to fight on."

You can listen to Alex speaking on BBC Radio Surrey about the decision and what it means for the the Duchenne community here.   Listen in from  2 hours and 7 minutes.

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