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Latest News

article thumbnail‘Government to sign off on CF drug deal next month’ (Sunday Business Post) Please see below an article from the Sunday Business Post which predicts the approval of Orkambi ‘next month’. This follows on from recent positive comments by the Minister for Health Simon Harris TD on both Orkambi and the extension of Kalydeco on RTE radio and his...
Minister Simon Harris' comments
Monday, 06 March 2017
article thumbnailMinister Simon Harris' comments Cystic Fibrosis Ireland (CFI) warmly welcomes the comments by Minister Simon Harris on RTE’s Sean O Rourke programme Monday 6 March 2017 which signifies that further significant progress has been made towards the approval of Orkambi and the extension of Kalydeco. While we will remain cautious until a final decision is...
Protest at the Dáil today at 1.15pm
Wednesday, 01 March 2017
article thumbnailProtest 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...
article thumbnailMinister's Statement on Orkambi and Kalydeco Cystic Fibrosis Ireland welcomes the statement last night, by Minister for Health Simon Harris TD that progress is being made in relation to the approval of ground breaking CF drugs Orkambi and Kalydeco. CEO of CFI Philip Watt stated 'while this is a positive statement of intent there will remain high...
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As expected, both Orkambi and Kalydeco (for the treatment of children with CF aged 2 years and older) will be subject to a full review by the National Centre for Pharma Economics (NCPE) in Ireland. This is normal for such drugs. This process includes a Health Technology Assessment (HTA) that may take up to 90 working days. We will let you know the outcome of these two reviews as soon as we hear.

We thank  everyone who responded to our recent survey – we received almost 500 responses which is an indication in itself how important this issue is  to our members. CFI is currently finalising our report which will include information drawn from this survey.

In the meantime, Minister for Health, Leo Varadkar TD has agreed to meet with Cystic Fibrosis Ireland following our request for a meeting before Christmas. This will take place before the end of January. CFI welcomes this opportunity to discuss with the Minister issues such as access to new and innovative therapies as well as other key CF related issues including staffing levels in hospitals and investment in key CF centres.

Many thanks to all our members for their support to date.

Philip Watt

CEO Cystic Fibrosis Ireland

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