Ian Blackford MP calls for ‘urgent action’ on availability of breakthrough Cystic Fibrosis drug.
Ian Blackford MP has today called for a deal to be struck to allow Cystic Fibrosis sufferers across Scotland access to ‘life-saving drug’ Orkambi through the NHS.
It is now over 1000 days since Orkambi was licensed throughout the United Kingdom. However, provider Vertex Pharmaceuticals has so far priced the Scottish NHS out of making the drug readily available.
Following a meeting with Orkambi campaigner and Cystic Fibrosis suffer, Hannah Mcdiarmid, Ian Blackford MP has written to new Health Secretary, Jeane Freeman MSP, to ask what progress has been made to push Vertex to make an affordable offer to the Scottish Medicines Consortium.
He said: “Cystic fibrosis affects over 900 people in Scotland. When meeting with Hannah Mcdiarmid, I was really struck by her determination and positive outlook despite the debilitating illness affecting her. She is an inspirational young lady”
“The Scottish Government is aware of the issue, they have previously committed to dialogue with Vertex to push them to do the right thing and do it quickly. The sad reality is, that time is running out for people like Hannah. I am determined to assert as much political pressure on this as I can.
“I have written to the Health Secretary, Jeane Freeman MSP, to ask what progress is being made with Vertex and when can we expect to see Orkambi available through the NHS. A 2016 UK Cystic Fibrosis Registry Report told us that there are 336 people in Scotland who could benefit from access to Orkambi, that’s over a third of registered sufferers here. We need to see progress on this and we need to see it quickly”
Commenting after meeting Ian Blackford MP, Orkambi campaigner, Hannah Mcdiarmid said: “we’ve already been waiting for far too long for this drug and waiting any longer could mean that it’s too late for some of us, including myself.”