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article thumbnailCystic Fibrosis Ireland warmly welcomes granting of planning permission for the building of the new National Children’s Hospital at St James’s Hospital in Dublin. CEO of Cystic Fibrosis Ireland, Philip Watt, urged that 'the building of the new National Childrens' Hospital (NCH) should commence as soon as possible. Today is an important step...
Cystic Fibrosis Ireland meets with TDs
Wednesday, 23 March 2016
article thumbnailCystic Fibrosis Ireland met with 53 TD’s from around the country on Tuesday 22nd March in Buswells Hotel, Dublin. Philip Watt CEO of CFI said ‘we spoke individually to 53 TDs on the need for cross party support for the funding of Orkambi in Ireland. CFI also highlighted some CF centres are 20 staff short of what they should have according to...
article thumbnailCystic Fibrosis Ireland Launches 65 Roses Day (Friday April 15) 2016 Sees a New Period of Hope for People with Cystic Fibrosis (CF), but Hope has to be Sustained Through Tackling Major Staffing Shortages in CF Centres and Ensuring Access to Ground-breaking CF Drugs Cystic Fibrosis Ireland has today welcomed a new period of hope for people with...
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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