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CFI Says Thanks
Wednesday, 12 April 2017
article thumbnailCFI says thanks to the Government and all Political Parties for support for Orkambi and Kalydeco Cystic Fibrosis Ireland wishes to acknowledge Government, and all political parties for their support in ensuring Orkambi and Kalydeco was approved Among the many we would like to thank are: An Taoiseach, Enda Kenny TD; Minister for Health Simon...
Yes 2 Orkambi
Tuesday, 11 April 2017
Yes 2 Orkambi - Agreement Reached Statement from Cystic Fibrosis Ireland - April 11 2017 Cystic Fibrosis Ireland (CFI) warmly welcomes the joint statement from the Minister for Health and Vertex that an agreement has been reached between the Health Service Executive (HSE) and Vertex Pharmaceuticals for the reimbursement of the ground-breaking...
article thumbnailProtest and March Wednesday 12th April Kildare Street, Dublin at 1pm To support access to Orkambi and Kalydeco Cystic Fibrosis drug therapies   Assemble 1pm sharp outside the Dail Wear something purple and bring a whistle In support of our member’s wishes and in partnership with CF advocates, Cystic Fibrosis Ireland is urging all our members and...
article thumbnailTezacaftor/Ivacaftor: Promising Results from Phase 3 Trials Results released from the first of the large Phase 3 clinical trials of the drug combination Tezacaftor/ivacaftor demonstrated that people with CF with two copies of the F508del mutation ages 12 and older who received the treatment had significant improvements in lung function (4...
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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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