Latest News

Latest News

article thumbnailUpdate on Orkambi/Kalydeco drug therapies 23 February 2017 Many thanks to Joan Collins TD who sent these answers to parliamentary questions to CFI.      QUESTION NOS: 197 to 199 DÁIL QUESTIONS addressed to the Minister for Health (Simon Harris T.D.) by Deputy Joan Collins for WRITTEN ANSWER on 22/02/2017 * To ask the Minister for Health if the HSE...
article thumbnailProtest outside the Dail Wednesday 1 March 1.15pm Cystic Fibrosis Ireland will be supporting a further protest outside the Dail in Kildare Street on Wednesday 1 March at 1.15pm. The aim of the protest is to highlight the urgent need for the government to approve the ground breaking Cystic Fibrosis drugs Orkambi (550 patients) and the extension...
article thumbnailResearch and Policy Senior Coordinator Job Vacancy   Job Title: Research and Policy Senior Coordinator Contract: One Year Full Time Post  Closing Date: 3rd March 2017 at 4pm  Application by Application Form Only. CV’s will be rejected.  Download the Application Form here.                Position Overview & Main Responsibility The Research and Policy Senior...
Candlelight Vigil in Support of Orkambi
Friday, 10 February 2017
article thumbnailCandlelight Vigil in Support of Orkambi A group of parents are organising a candlelight vigil in support of Orkambi. While this is not a CFI event we are happy to let our members know in case they wish to support. Families and friends of Cystic Fibrosis sufferers in Ireland will be holding candle light vigils at various points throughout 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

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