A furious Fife dad says his son is still being denied a potentially life-changing treatment despite a promise by SNP health secretary over a month ago.
Health chief Neil Gray promised to ensure access to the new drug for children with Duchenne Muscular Dystrophy (DMD).
It is thought a small number of young boys in Scotland could benefit from the medicine givinostat which slows progression of the disease.
But despite pleading for access, and the manufacturer offering to provide it for free, NHS health boards have so far refused to prescribe it on an early access basis.
Dunfermline man Jamie Tierney, whose six-year-old son Jamie lives with DMD, is furious progress has stalled in the month since Mr Gray met families and promised to ensure access to the treatment – which is already available in England.
‘It’s gone quiet’
Mr Tierney and his family have spent tens of thousands of pounds battling for access to the latest DMD treatments and are even considering a move to the USA.
The worried dad told The Courier the lack of progress since meeting the health secretary had only hardened his resolve to move abroad to access the best healthcare for his son.
“We’ve heard absolutely nothing. Its just gone quiet. Where do we go from here? We aren’t any further forward,” he said.
“We feel so let down. With the simplicity of this drug, it really isn’t giving me much hope for when more effective come in the future.
“It just feels like maybe the health secretary had a bit of heat on him. He’s now had that meeting and it’s all gone quiet. Has that just been done to take the heat off the health secretary?”
He fears some children who would have been eligible for givinostat will now longer be able to benefit because of the short window in which the drug is effective.
“We’re still in the position where we are exploring leaving Scotland. Our son’s healthcare is more important than anything,” he added.
Dunfermline and Dollar MP Graeme Downie, who is supporting the Tierney family, told The Courier: “It’s been over a month since I wrote to Neil Gray about the appalling lack of access to the medication Jamie needs.
“Jamie’s family have told me clearly that time is muscle. Every day Jamie goes without medication is another day where treatment will be less effective but Neil Gray continues to hide from accountability.”
The Scottish Government says children with DMD will be contacted by NHS boards soon.
Health secretary Neil Gray said: “I am determined to ensure that young people with Duchenne Muscular Dystrophy (DMD) benefit from new medicines, such as givinostat, to support them to live longer, fuller lives.
“We have been working alongside the health boards who provide regional services to those with DMD to make sure this happens as soon as possible.
“I was pleased to speak with Jamie’s dad alongside the representatives of other families on April 22 and would be very happy to speak with Jamie’s family again as this work progresses.”
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