Supporters from the north west of the campaign to have the Cystic Fibrosis drug Orkambi made more widely available in Ireland are gathering in Dublin for a protest outside the Dail this afternoon.
The demonstration comes after a report in The Sunday Business Post revealed the HSE is set to recommend against funding the treatment after failing to reach a deal with the manufacturer Vertex.
The drug currently costs about €160,000 per patient per year.
The organiser of today’s protest is Jillian McNulty, a 40-year-old CF sufferer from Longford who has also lost a brother to the disease, which mainly affects the lungs and digestive system.
Among those attending today’s protest will be Gordan Ryan from Boyle, a cystic fibrosis sufferer who has now got a lung transplant.
He believes if Orkambi had been available, it would have helped him.
