Latest News

Latest News

Update on Orkambi Extension
Wednesday, 10 January 2018
Update on Orkambi extension for Children with CF aged 6-11 years Cystic Fibrosis Ireland understands that the HSE is aiming to make Orkambi available to children with CF from the beginning of February 2018. This is very welcome and we thank the HSE and the Minister for Health, Simon Harris TD, for their on going commitment to CF care in Ireland.  EU...
EU Approval for Orkambi in Children with CF
Wednesday, 10 January 2018
EU Approval for Orkambi in Children with Cystic Fibrosis Ages 6-11 with Two Copies of the F508del Mutation  Cystic Fibrosis Ireland welcomes the decision of the European Medicines Agency (EMA) to extend the Cystic Fibrosis drug ‘Orkambi’ to children aged 6 to 11 years old. Previously the drug had been available to young people and adults aged 12...
Cinema Campaign Raises Awareness and Funds for Cystic Fibrosis Ireland (CFI). 'Fight to Breathe', the public awareness video about Cystic Fibrosis (CF) that was shown nationwide in cinemas in November 2017, has contributed to an increase in awareness from Cystic Fibrosis Ireland of 15% or 9 percentage points. According to research conducted by...
Double Lung Transplant for CF Advocate Orla Tinsley Cystic Fibrosis Ireland sends our love and best wishes to the wonderful CF Advocate Orla Tinsley who we understand has been called for a double lung transplant in New York Presbyterian Hospital.  After several months on the transplant list and six calls, hopefully this will prove 'lucky number...
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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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