Longford campaigner addresses cystic fibrosis protest at Leinster House

Families affected by the decision not to provide a cystic fibrosis drug to 35 children, aged between 6 and 11, staged a protest at the gates of the Dáil and Seanad yesterday.

Jillian McNulty, a cystic fibrosis campaigner from Longford, was among those who addressed the gathering

Cystic Fibrosis Ireland is calling for an independent arbitrator to resolve a pricing dispute between the HSE and the drug company Vertex, which makes Kaftio, the treatment at the centre of the dispute.

Purple roses, the emblem of the cystic fibrosis community, were presented yesterday to the Head Usher of Leinster House to highlight the plight of the 35 children who are without Kaftrio, which is described as a ground-breaking treatment.

Cystic Fibrosis Ireland chief executive Philip Watt said 35 children were not receiving the drug "notwithstanding the fact that 140 other children in the same age group are accessing Kaftrio right now in Ireland."

The cystic fibrosis affecting the 35 children in question is different genetically to the form affecting the 140 getting the medicine.

The HSE and Vertex were "arguing over which genotype was included in the original deal," said Mr Watt.

Cystic Fibrosis Ireland has called on the Minister for Health to intervene to break the impasse.