ACCESS TO TRANSLARNA THROUGH THE NHS

Summary

That this House is deeply concerned at the decision of NHS England to halt its assessment of the Duchenne muscular dystrophy treatment, Translarna, whilst it reconsiders how it assesses new treatments; understands that Translarna, which received conditional approval from the European Commission (EC) in July 2014, is the first drug to treat an underlying genetic cause of Duchenne muscular dystrophy; notes that under the terms of the EC's conditional approval Translarna would be made available to boys whose Duchenne is caused by a nonsense mutation, who are over five and can still walk; further notes that NHS England has taken its decision at a very late stage of the assessment process; acknowledges the deep concern of families at this delay, who fear that it could prevent their sons from accessing Translarna before they lose the ability to walk; and joins the calls of the Muscular Dystrophy Campaign for NHS England to take emergency steps to ensure that Translarna is made available to the children it could help by April 2015.

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Timeline

1. 17 December 2014

   Early Day Motion

   That this House is deeply concerned at the decision of NHS England to halt its assessment of the Duchenne muscular dystrophy treatment, Translarna, whilst it reconsiders how it assesses new treatments; understands that Translarna, which received conditional approval from the European Commission (EC) in July 2014, is the first drug to treat an underlying genetic cause of Duchenne muscular dystrophy; notes that under the terms of the EC's conditional approval Translarna would be made available to boys whose Duchenne is caused by a nonsense mutation, who are over five and can still walk; further notes that NHS England has taken its decision at a very late stage of the assessment process; acknowledges the deep concern of families at this delay, who fear that it could prevent their sons from accessing Translarna before they lose the ability to walk; and joins the calls of the Muscular Dystrophy Campaign for NHS England to take emergency steps to ensure that Translarna is made available to the children it could help by April 2015.

   Source: Early Day Motion

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Sponsors

• Mr David Anderson · Labour · Primary sponsor

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