37646 - Muscular Dystrophy: Drugs (Answered)

Mr David Anderson
To ask the Secretary of State for Health, how many meetings NHS England has had with PTC Therapeutics to discuss an agreement on price for Translarna to treat Duchenne muscular dystrophy since 15 April 2016.

George Freeman

NHS England has advised that on 4 May 2016 the National Institute for Health and Care Excellence (NICE) asked NHS England and PTC Therapeutics to continue to work towards agreeing an acceptable managed access arrangement for Translarna (ataluren) for the treatment of children aged five and over with Duchenne muscular dystrophy caused by a nonsense mutation.

NHS England and the company have been asked to reach agreement on the cost of the drug to the National Health Service by 7 July.

NHS England has advised there have not been any commercial meetings with PTC Therapeutics in the period since 15 April 2016, however, it is in regular contact with the company.

NHS England will be meeting with PTC Therapeutics when it has concluded the detailed preparatory work required to effectively respond to NICE's request within the set timescale.