Andy Slaughter – 2016 Parliamentary Question to the Department of Health

The below Parliamentary question was asked by Andy Slaughter on 2016-10-11.

To ask the Secretary of State for Health, how many children are born each year in England with Duchenne muscular dystrophy; how many people are living with this condition; and how many such people do receive Translarna.

David Mowat

Information on how many children are born each year in England with Duchenne muscular dystrophy is not collected. However, it is estimated that there are around 2,500 people living with Duchenne muscular dystrophy in the United Kingdom.

Following the recommendation made by the National Institute for Health and Care Excellence in April 2016 and the announcement made by NHS England on 7 July, Translarna is now routinely commissioned for those individuals who have Duchenne muscular dystrophy and meet the relevant clinical criteria. Currently, there are approximately 50 patients receiving Translarna.