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CF Drugs Update: July 2018
Monday, 09 July 2018
CF Drugs Update: July 2018 This is a brief summary of some recent developments in CF drug therapy availability (and likely future availability) in Ireland. OrkambiThe roll out of Orkambi for 6-11 year olds in Ireland is going very well, including since extended use was approved in March 2018 (previously Orkambi was only licensed for 12 year olds...
Statement from Cystic Fibrosis IrelandContinuing lack of deal for Orkambi in England for people with cystic fibrosis will also impact on Northern Ireland Date of issue: July 5, 2018 Cystic Fibrosis Ireland (CFI) is very disappointed to learn today (5 July 2018) that there continues to be no agreement for the provision of Orkambi and future...
Sweden adapts Irish drug therapy deal to make Orkambi available Philip Watt, CEO of Cystic Fibrosis Ireland welcomes the decision to make the ground-breaking CF drug therapy Orkambi available to CF patients in Sweden. In doing so, the Swedish authorities and Vertex (pharmaceuticals) have adapted the pioneering long term access programme that was...
  'Fight to Breathe', the public awareness video about Cystic Fibrosis (CF) was recently awarded a Creative for Change Bronze Award at the Institute of Creative Advertising and Design (ICAD) Awards. The ICAD Awards are held annually and are the oldest awards festival in Europe. 2018 marked the 60th anniversary of the Awards which are run by 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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