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VX-661 news
Tuesday, 16 August 2016
article thumbnailVX-661 news Vertex Pharmaceuticals issued a statement on Monday 15th August that it is ending a clinical study testing a two-drug combination therapy on a small group of cystic fibrosis patients after an independent board concluded the experimental treatment wasn’t showing meaningful benefit. Executives had previously warned that the late-stage...
article thumbnailStatement from Cystic Fibrosis Ireland on New Drug Pricing Deal Cystic Fibrosis Ireland broadly welcomes and congratulates the Minister for Health, Simon Harris TD, for the new deal with the Irish Pharmaceutical Healthcare Association (IPHA), which has the potential to make savings of €750 million over the next four years from the existing drugs...
article thumbnailCFI Ireland recently produced a new Factsheet on Cross-Infection Guidelines for PWCF. Click here to download PDF. People with CF work hard to stay healthy, but their job is made harder when they encounter germs and sources of bacteria in many different places on a daily basis. These guidelines aim to inform people about:- understanding more...
article thumbnailCystic Fibrosis Ireland is please to publish our latest Annual/Impact and Financial Reports Impact Report 2014/2015 Financial Report 2015  
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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