SCOTS sufferers of a rare muscle-wasting disease are hopeful of a breakthrough in their battle for a drug rejected for use on the NHS after a "very positive" meeting with the First Minister.
Alex Salmond held talks for more than an hour at the Scottish Parliament yesterday with Lynn Millar, a Pompe disease patient from Troon, and Sheena Burton, the mother of a victim from Aberdeen who has been left in a wheelchair as his condition deteriorated. They were accompanied by Joan Fletcher, an expert in Pompe disease from Manchester, and campaigner Sean Clerkin, from Glasgow.
The group was calling for Mr Salmond's help to access the only drug, Myozyme, which can halt the progress of the disease.The Scottish Medicines Consortium rejected it for use on the NHS in 2007 on the grounds that the drug – which can cost up to £250,000 a year – was not cost-effective.
Ms Millar and Ms Burton's son subsequently applied to their respective health boards for Myozyme to be prescribed on an individual basis, but their bids were knocked back. A third patient living in Glasgow also had her request rejected by NHS Greater Glasgow and Clyde.
Although Mr Salmond told the group he could not legally overturn the decisions of the health boards, he urged them to reapply with the assistance of their MSPs. Mr Clerkin said: "It was a very positive meeting. He suggested that individual MSPs would be more than willing to assist the individuals in terms of supporting the applications which are going to be resubmitted now to the health boards.
"He's also going to ask the Health Secretary, Nicola Sturgeon, whether it's possible for the manufacturers to make a resubmission or for this drug to be reassessed by the SMC."
Ms Millar, 43, said she hoped to reapply with the help of her MSP within the month.
Ms Fletcher added: "He was very well-informed, that's what I was really impressed with. He was very aware of the specific problems that we were facing."
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