Carlow Cysitc Fibrosis sufferer says breakdown in Orkambi talks hugely disappointing

A Carlow Cystic Fibrosis sufferer says news of the breakdown in talks for Orkambi is hugely “frustrating and upsetting.”

This week the HSE and the makers of the drug failed to reach an agreement in price talks that have been ongoing for the past year.

Vertex had initially looked for €159,000 per patient and the HSE estimated that this would end up costing the exchequer about €400 million.

Local teenager Kelsey Nolan has told KCLR on a number of occasions how beneficial Orkambi would be to both her and her younger brother and has now expressed her disappointment by this breakdown.

Kelsey is currently back in St Vincent’s Hospital again but she says she’s going to keep campaigning and fighting for the drug.