Government should intervene to secure essential drug for Cystic Fibrosis patients – O’Rourke

Published on: 28 November 2016


Fianna Fáil TD for Kildare North Frank O Rourke has called on the Government to intervene in the dispute between the HSE and the supplier of a life changing drug for Cystic Fibrosis patients.

“The HSE and Vertex Pharmaceuticals entered price negotiations after the National Centre for Pharmacoeconomics found Orkambi was unjustifiably expensive,” said Deputy O’Rourke.

“Currently, there are around 1,200 people with cystic fibrosis in Ireland. However, this country apparently not only has the highest rate of the disease per head of population in the world, but also has some of the worst types, because of the particular genotype prevalent in Ireland

“Orkambi is very expensive but a lot of people in the trials have done very well and it’s been a life-changer for many people. We need to ensure that the Government facilitates the process of securing the supply of this drug and should consider a pan EU supply framework for the procurement of this drug if the supplier does not have meaningful engagements with the HSE.

“Constituents have raised this issue with me and I strongly feel that this drug should be available for our Cystic Fibrosis patients. I, together with our party’s Health spokesperson, Billy Kelleher TD,   will continue to put pressure on the Government to adopt a hands on approach to secure a resolution to these negotiations,” concluded Deputy O’Rourke.


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