The first minister Nicola Sturgeon is to meet the campaigners behind a petition demanding she reverse a controversial decision not to license a drug for children affected by muscular dystrophy.
The petition on the website Change.org has gathered more than 50,000 signatures in just three weeks.
The drug, Translarna, has been approved for continued use in England but the Scottish Medicines Consortium ruled last month that the drug would not be licensed for funding in Scotland.
Translarna, also known as ataluren, helps young people affected by Duchenne Muscular Dystrophy, a muscle-wasting condition which only affects boys. Most sufferers end up in a wheelchair in their teens, but the drug treats the disease, enabling patients to continue to walk for longer.
However the SMC ruled that there was uncertainty over the benefits in relation to the cost involved and it could not be approved as a good use of NHS resources.
The petition started by nine year old DMD patient Michael Young calls on the first minister to reverse the decision so that others can receive the drug - which he currently gets as part of a trial, but could lose when the trial ends.
In his appeal to Ms Sturgeon, he said: "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."
As of last night 53,367 people had signed up to his petition. Michael added: "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."
It has been reported that a meeting with Nicola Sturgeon has been brokered by Jim Eadie, former MSP currently standing for re-election in Edinburgh Southern constituency. He said: There has been widespread concern among families affected by Duchene that boys in Scotland could be denied this life-enhancing treatment."
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