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Mary Challenges the Prime Minister



Mary has challenged the Prime Minister on access to a breakthrough drug for boys affected by Duchenne muscular dystrophy. Mary’s intervention coms ahead of a decision being taken in the coming weeks on a breakthrough drug, Translarna, which could enable them to continue walking for longer.

At Prime Minister’s Questions, Mary stepped up and challenged the Prime Minister to “tell the House that these children can expect the positive answer they so desperately need now?”

Following this, Mary then joined six boys with Duchenne muscular dystrophy as they delivered letters to Downing Street in a last chance bid to appeal for help from the Prime Minister.

Mary, the children’s families and Muscular Dystrophy UK have campaigned for NHS England to make Translarna available, since it became the first EU-approved drug for tackling Duchenne muscular dystrophy* last August. The condition affects 2,500 people in the UK, causing increasingly severe disability and cutting short lives.

Translarna could allow the boys to stay on their feet for years longer and is available in Germany, Spain, France, Italy, Denmark, Estonia and Greece since last year. Administrative delays have left UK parents facing an agonising wait for NHS England’s decision on the drug.

In quite literally a race against time, boys with Duchenne muscular dystrophy must be able to walk to be eligible for Translarna.

View the six letters by the boys here.
A gallery of downloadable photos from today’s event is here

Mary Glindon MP said:

“I was delighted to be able to support the families at Downing Street yesterday and to challenge the Prime Minister on access to this new drug. Everyday counts for these boys: they have to be able to walk in order to qualify for Translarna, which is why it’s essential that it’s a ‘yes’ from NHS England at the end of June. Further delays or a refusal to grant funding would be unacceptable, and may well mean that they miss out on the drug entirely.”

A Downing Street spokesperson said:
Duchenne Muscular Dystrophy is a severe and debilitating condition and the Government completely understands the urgency with which the boys and their families are seeking a decision regarding this drug.

“Decisions on drugs like Translarna must always be taken by clinical experts based on the most up-to-date medical evidence.

“It is absolutely right that children and their parents should ask for the very best from our health service and NHS England are urgently looking at this particular drug and its use.”

Sue Barnley, whose son Harry (6) was among the boys, said:
 “We are very proud of Harry for writing his own letter to the Prime Minister. He absolutely loves football and playing with his brother Jack. As a parent we do all we can to help our children and it’s amazing to think that we may have the chance to give them precious years longer on their feet to be able to do the things they love.

“Translarna is the first drug to ever become available for Harry’s condition and it's an absolute sham that it has faced so many delays. NHS England has a responsibility to say ‘yes’ for us and our boys.”

Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK, said:
“Translarna is the first and only treatment tackling the cause of Duchenne muscular dystrophy. We simply cannot afford to refuse it to the group of boys whose lives it could transform and we urge Mr Cameron to listen to the desperate pleas of these and their families. We greatly appreciate the support of

“It is essential that these boys have immediate access to this drug in the same way that it is already available to boys in other countries across Europe. We find it appalling that these young boys have been denied access in this country to date and now is the time for this to be put right.”

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