The campaign by a Sligo town family to have the drug, Orkambi, made more widely available to cystic fibrosis sufferers has been raised in the Dail this afternoon.
Terri and Aisling Golden have been among the most vocal critics of the decision by the HSE not to fund the provision of the drug in future, due to it’s unjustifiable cost – estimated at 160,000 euro per patient per year.
21 year old Grainne Golden died from cystic fibrosis last March. Her family plan to march outside Dail Eireann next week to highlight the matter.
The issue was raised with the Taoiseach by Fianna Fail Deputy, Marc MacSharry.
In response, Enda Kenny said this wasn’t a decision made by politicians, but arose from the dispute over the cost of the provision of Orkambi by its maufacturer, the Vertex group.