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Latest News

Orkambi Protest information
Thursday, 01 December 2016
article thumbnailOrkambi protest information organised by Jillian McNulty In response to information requests from our members about next week's protest: Jillian McNulty, an independent advocate for CF, is organising a protest outside Dail Eireann in Kildare Street on Wednesday 7th of December. She is asking for everyone who wishes to participate to assemble at...
Response from Vertex
Thursday, 01 December 2016
article thumbnailResponse from Vertex On Tuesday 29th November, CEO Philip Watt wrote an open letter to Vertex Pharmaceuticals regarding the negotiations around Orkambi. You can download Vertex's response below. Response from Vertex, RE: Access to Orkambi for the treatment of Cystic Fibrosis (PDF)...
Orkambi Update - 30th November 2016
Thursday, 01 December 2016
article thumbnailOrkambi Update - 30th November 2016 The following are points made by Cystic Fibrosis Ireland in response to the public debate on Orkambi over the past few days. 1. The Urgent need For Ministerial Intervention and Positive Response by Vertex CFI has written to Minister Simon Harris to intervene to save the negotiations on Orkambi which appear to be in...
article thumbnailOpen Letter to Vertex Pharmaceuticals from CFI 29th November 2016 President, and Vice President Regional General ManagerEurope NorthVertex Pharmaceuticals (Europe) Ltd Dear Sirs, On behalf of Cystic Fibrosis Ireland (CFI) we would strongly urge, even at this late hour, that further negotiations are undertaken between Vertex Pharmaceuticals and the HSE to...
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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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