Joan Collins (Dublin South Central, Independent) | Oireachtas source

I tabled a written question on 24 January asking what the status of talks were between Vertex and the HSE. The reply stated that talks resumed last December and the Minister stated at the end of February that a decision would be made in a matter of weeks. It has now been months. It has been a very frustrating ten months for people in respect of this issue. On 28 and 29 March I received calls from parents of CF children saying Vertex had contacted them to say no contact had been made with it since 2 February. I submitted this Topical Issue matter on 30 March and unfortunately the Minister has not been available since then. Maybe he was waiting for today.

Cystic fibrosis awareness week starts this week. I watched Jillian McNulty last night on the "Claire Byrne Live" show, as well as Ronan and Linda, the parents of young Finn, and Aidan, who are waiting for Orkambi. I believe the talks started again last week. The price has gone down but it looks like the HSE is looking for a package for future drugs like VX-661, which is really a game changer for people with CF. Members of the CF community feel they have been pawns in this process, between Vertex putting them under huge anxiety and the Minister suggesting earlier this year that there would be announcements imminently. Vertex was looking after its own self-interest there, as well.

I would particularly like to mention Hazel Robinson, a mother who has been camping outside these Houses for the last days. She has a young daughter who has CF. I got word that there could be a statement in the Dáil today and I presume that is why the Minister, Deputy Harris, is in the Chamber. I hope the statement is a positive one. If it is not people will be very angry tomorrow at the demonstration at 1 o'clock. I hope they will be out there celebrating rather than being angry.

See this speech in context