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Orkambi and Kalydeco Update
Monday, 16 January 2017
article thumbnailOrkambi and Kalydeco Update The Irish Independent reported on Saturday 14th of January that Vertex has made a revised offer to the HSE for the reimbursement of Orkambi and Kalydeco and this offer is currently under consideration by the HSE (download press report here).
article thumbnailOrkambi Update - Ongoing Negotiations Cystic Fibrosis Ireland have been advised that Vertex met with the HSE yesterday (05.01.17) and negotiations on the re-imbursement of Orkambi are ongoing.
article thumbnailGermany approves award winning Cystic Fibrosis drug ‘Orkambi’ Philip Watt CEO of Cystic Fibrosis Ireland welcomes today’s news (19 December 2016) that a pricing and reimbursement agreement for the ground breaking Cystic Fibrosis drug Orkambi has been reached with the German Statutory Health Insurances (GKV-SV). According to a press release issued...
article thumbnailLetter to Tony O Brien, Chief Executive HSE, Re: Orkambi negotiations Yesterday Philip Watt, CEO of Cystic Fibrosis Ireland sent this letter to Tony O Brien in the HSE regarding the negotiations between the HSE and Vertex. A copy of this letter was also sent to the Minister for Health Simon Harris, John Hennessy, National Director, Primary Care in...
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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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