Dublin South West TD, Seán Crowe, has welcomed the Government’s announcement that a deal has been reached with Vertex, the makers of Orkambi and described the news as a victory for Cystic Fibrosis patients and their families.
Crowe said that it was absolutely appalling that patients and families had to go to such extremes as camping outside Leinster House, go on marches and protests, and lobby public representatives in order to get a drug that could potentially save or transform the health of their child.
Teachta Seán Crowe said:
“I very much welcome the announcement that an agreement has been reached between the Health Service Executive and the drug company Vertex which will see the vital drug Orkambi available to those who need it from next month.
“This is a victory for the campaign of Cystic Fibrosis patients and their families and a ringing endorsement of their hard work.
“It is regrettable that they were forced to go such extremes and have to protest to get this life saving treatment but it is welcome that their campaign has been fruitful.
“Parents and relations of children suffering from a disability should not have to camp outside Leinster House, go on marches and protests or lobby public representatives in order to get a drug that could potentially save or transform the health of their child.
“While making these drugs available is of course the right thing to do, we must now ensure that there is greater focus on our indigenous industry and increased investment in research in our universities so that we don’t find again our seriously ill citizens at the mercy of foreign multi nationals and the outcome of negotiations between Government and large pharmaceutical firms.”