More than a thousand Cystic Fibrosis campaigners are gathered outside Leinster House calling for the approval of the Orkambi drug.
Protestors are holding a minute’s silence outside Leinster House for the second time in a matter of months.
Campaigners will hold purple balloons and purple roses as an expression of solidarity while they continue to protest delays in securing approval for groundbreaking CF drug Orkambi.
It’s Ireland’s most common genetically inherited disease that primarily affects the lungs and digestive system of about 1,200 children and adults.
Fianna Fail TD Marc MacSharry raised the matter of delays in getting the drug approved in the Dail yesterday.
He wants specifics of when Orkambi could become available.
The Health minister Simon Harris issued a statement last night asking campaigners to allow him more time to negotiate a deal on the drug.
Enda Kenny told deputy MacSharry that the Minister for Health is not looking for a short term fix and that takes time.
But CF campaigner and organiser of today’s protest Jillian McNulty says time is something they don’t have:
