Latest News

Latest News

Orkambi update
Tuesday, 27 September 2016
article thumbnailOrkambi update CFI has recently written to the Minister for Health to urge once again that the negotiations on Orkambi and the extension of Kalydeco are concluded in a positive way for our members as soon as possible and to remind him and the government of the importance of these drugs to our members. Background note: Cystic Fibrosis Ireland has...
article thumbnailUpdated CRE statement from Tallaght Hospital The National Children's Hosptial, Tallaght has released a new statement regarding CRE. You can read the statement in full below.    Statement for CF Ireland from the National Children’s Hospital, Tallaght, regarding antibiotic resistant bacteria, (CRE) and Cystic fibrosis. The national Antibiotic...
article thumbnailStatement issued by Tallaght Hospital  Many thanks to Tallaght Hospital who have issued the following reassurance on the risk posed by CRE, which is an antibiotic resistant bacteria. We would of course ask those attending/visiting any CF centre to continue to observe normal good practice in relation to CF related cross infection and infection...
Direct Mail Initiative: Background note
Thursday, 22 September 2016
article thumbnailDirect Mail Initiative: Background note CFI is developing a direct mail appeal to help support a forthcoming independent living initiative for people with CF. To help fund this new initiative we will be appealing to the general public through a direct mail appeal. In preparation for this general appeal to the public we have sent a copy of the...
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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