Dave Anderson backs call for national newborn screening programme for Duchenne

Dave Anderson MP speaking at the Walton Report launch

Dave Anderson backs call for national newborn screening programme for Duchenne.

Dave Anderson MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy, in response to an article in The Times today, has backed the call for a national newborn screening programme for Duchenne muscular dystrophy.

Professor Dame Kay Davies of the University of Oxford has said that a national screening programme for Duchenne must be planned now if the first effective treatments for the condition are to benefit patients without delay. Two drugs are in advanced clinical trials, with a third nearly ready to be tried in patients.

Dave Anderson commented today:

“Professor Kay Davies was right to call for planning for a national newborn screening programme for Duchenne muscular dystrophy at the Times Cheltenham Science Festival.

“The success of recent clinical trials brings us ever closer to finding effective treatments for this devastating condition.  Screening will mean that once available, treatment could be administered to children from birth. However, many families faced with a diagnosis of a progressive muscle-wasting disease in a newborn will still have no access to specialist advice and emotional support.  There is less than one specialist Neuromuscular Care Advisor for every 2000 families affected in the UK.  I myself have lost ten family members to muscular dystrophy, and firmly believe it to be vital that every family has access to informed emotional support through this agonising period.”

Under the Welsh screening programme which is currently in place, Ross Taylor, who is 16, was screened a few weeks after his birth. This screening revealed that he had Duchenne muscular dystrophy. His father, Jon Taylor, who is Ross’ full-time carer, told The Times of how beneficial the early diagnosis was despite the lack of treatments to help Ross. Jon said:

“The greatest thing was it allowed us to plan for the future. Straightaway we started looking for a bungalow. We knew down the line that the house we were living in would not be suitable.”

Find out more about newborn screening discussions…

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