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Help Boys In Scotland Get New Duchenne Drug

June 13, 2016

An email from

My name is Michael. I am 9 years old, I live in Falkirk and I have Duchenne muscular dystrophy. 

There is a new medicine called Translarna which I get as part of a drugs trial.  Translarna keeps me well and helps me to walk.

The Scottish Medicines Consortium have said that they will not let boys living in Scotland have the medicine on NHS Scotland. That means when the drug trial finishes, I could lose my medicine.  I know other boys – including Cormac Fegan and Ross Munro – who also need the medicine and could lose it because of the SMC.

If my medicine is stopped, I will need a wheelchair and will become very ill. I also won’t be allowed to try other new medicines that could help me once I’ve stopped walking. This scares me

I am asking for help from the First Minister, Nicola Sturgeon, to change the SMC’s mind to make sure that me, Cormac, Ross and the other boys with Duchenne can get the medicine in Scotland like lots of other boys do in Europe.

Update 19/04/2016 

Dear First Minister,

I have heard that boys in England like Archie Hill and Harry Barnley have been told they will be able to get Translarna. I am very happy for them, but me and my friends in Scotland still cannot have the drug on the NHS. Please please help boys in Scotland get Translarna. 

From Michael 

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