Protest at the Dáil today at 1.15pm
Cystic Fibrosis Ireland will join the CF Community at a protest today, Wednesday 1 March at 1.15pm outside the Dáil to highlight the urgency of approving Orkambi and Kalydeco. We invite anybody who can, to join the CF Community in the continued effort for access to these vital drug therapies.
CFI welcomed the recent statement by Minister for Health Simon Harris, TD that progress is being made in relation to the approval of Orkambi and Kalydeco. However, for people living with CF time is precious and they have already been waiting nine months for a decision and almost two months since the revised offer came in from Vertex. We understand this revised offer provides a very significant discount on the original list price.
Jillian McNulty and Philip Watt (CFI) were invited to a private meeting with the Minister for Health Simon Harris at short notice last Monday. The Taoiseach referred to this meeting in the Dáil, so we can now publicly acknowledge that meeting without breaking confidences. The meeting was courteous and constructive, but fell far short of a ‘yes’ decision on Orkambi and Kalydeco, as can be seen from the subsequent Minister’s statement. The Minister made it clear that while he was against the protest today, it would not jeopardise a possible final positive decision. Once again we welcome the support and efforts by Minister Harris and we will continue to engage with him and the Government to ensure we get a positive decision. CFI will also continue to provide support with the CF community at this difficult and anxious time.