Clare sufferers from Cystic Fibrosis are among those who are descending on Dublin to take part in a protest outside Leinster House.
Clare sufferers from Cystic Fibrosis are among those who are descending on Dublin to take part in a protest outside Leinster House.
It comes following a decision by the HSE not to fund Orkambi for CF patients here, claiming the price being asked by the supplier is "exhorbitant".
Today's protest come on the same day that Health Minister Simon Harris has travelled to Lisbon to raise the cost of the life saving drug with his European counterparts.
Discussions between the HSE and drugs compnay Vertex have broken down, amid claims that the supplier is refusing to budge from its figure of 159,000 euro a year per patient asking price.
Taoiseach Enda Kenny has hit out at Vertex over its stance.
A protest will get underway at Government building in the next half an hour, calling on both sides to come back to the table.
One of those who's travelled to Dublin is Ennis Fianna Fail Councillor Clare Colleran-Molloy, who lost both her niece Laura and nephew Noel to the disease.
She says CF-sufferers can't wait any longer for Orkambi.
Meanwhile, a Kilmurry-McMahon campaigner is vowing their quest to make Orkambi free for CF-sufferers will continue.
Pauline Hickey's 21 year old niece Grainne Golden succumbed to the disease earlier this year and Pauline says they are determined to fulfil Grainne's dying wish.
