Latest News

Latest News

article thumbnailJob Vacancy - Fundraising Executive   In order to continue and expand our work, we are looking to recruit a Fundraising Executive to join our Fundraising Team. The Fundraising Executive will be responsible for providing support to the Fundraising Team, assisting in developing and managing of a broad range of fundraising events and campaigns. The...
article thumbnailJob Vacancy - Public Awareness & Social Media Officer    We are currently looking to fill a full time role for a Public Awareness & Social Media Officer. This is a new role and one which will provide plenty of scope for the right person to showcase their skills. The Public Awareness & Social Media Officer will be responsible for helping to further...
article thumbnailThe Pipeline Aspect of the Recent Vertex and HSE Agreement A couple of CFI members have asked us to help clarify the ‘pipeline aspect’ of the recent HSE/Vertex agreement. This is an innovative aspect of the deal and we understand it has never being implemented before in Ireland and may even be unique in Europe. CFI pushed for and supported the...
Good News on Orkambi and Kalydeco
Friday, 02 June 2017
article thumbnailGood News on Orkambi and Kalydeco CFI has confirmation from both Vertex and the HSE that the final contracts for Orkambi and Kalydeco extension and pipeline drugs have been signed and it is likely that some CF centres will be beginning to get the drugs as early as next week. Please note: It will still take a while for all eligible patients 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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