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article thumbnailExtension of Kalydeco (Ivacaftor): Update from NCPE Today (12 October), the National Centre for Pharmacoeconomics (NCPE) have issued their recommendation following the Health Technology Assessment (HTA) of Kalydeco for children aged 2- 5years. Kalydeco for children aged 2–5 year olds* has not been recommended for reimbursement at the submitted...
article thumbnailNew CF unit formally opened by Minister Harris The new 2 floor CF unit in University Hospital Limerick was formally opened as part of the 6 storey Leben building on Friday 7th October. Pictured at the launch representing CFI and TLC4CF were: Patricia Duffy Barber; Owen Kirby; Marcella Clancy; Caitriona Hayes; Minister Simon Harris T.D; Linda...
article thumbnailPress Release from Cystic Fibrosis Ireland and TLC4CF New state-of-the-art two-floor in-patient and out-patient unit for adults with cystic fibrosis (CF) to be formally opened by Minister Harris on Friday 7th October at 2.15pm as part of ground-breaking Leben building. A new adult Cystic Fibrosis Unit developed by the Tipperary, Limerick and...
Orkambi update: 6 October 2016
Thursday, 06 October 2016
article thumbnailOrkambi update CFI knows for certain that the Orkambi negotiations are still very active and have entered into a crucial third round of talks focussed around price. We understand these talks are at a delicate stage. As with all important negotiations the two parties should be given the space to get a successful outcome, but they should also be...
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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