Latest News

Latest News

article thumbnailOffice Administrator / Receptionist  Job Title: Office Administrator / Receptionist Contract: Permanent Contract Closing Date: 4pm, Friday 2nd June   Application: By Application Form Only. CV’s will be rejected. Download the Application Form here.  Reports to: The Senior Co-Ordinator Finance with overall responsibility to the Chief Executive Officer...
Orkambi and Kalydeco Update
Monday, 22 May 2017
Orkambi and Kalydeco Update May 22nd  CFI has written to both Vertex and the HSE to urge them to agree the final details that will make Orkambi (and the extension of Kalydeco) available to our patients as soon as possible. CFI understands from both parties they do not envisage any problems at this stage which is good news. 
CFI Says Thanks
Wednesday, 12 April 2017
article thumbnailCFI says thanks to the Government and all Political Parties for support for Orkambi and Kalydeco Cystic Fibrosis Ireland wishes to acknowledge Government, and all political parties for their support in ensuring Orkambi and Kalydeco was approved Among the many we would like to thank are: An Taoiseach, Enda Kenny TD; Minister for Health Simon...
Yes 2 Orkambi
Tuesday, 11 April 2017
Yes 2 Orkambi - Agreement Reached Statement from Cystic Fibrosis Ireland - April 11 2017 Cystic Fibrosis Ireland (CFI) warmly welcomes the joint statement from the Minister for Health and Vertex that an agreement has been reached between the Health Service Executive (HSE) and Vertex Pharmaceuticals for the reimbursement of the ground-breaking...
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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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