CF drug campaigners from north west in Dublin for Dail protest

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.