Orkambi and Kalydeco Update

Orkambi and Kalydeco: Advocacy and Protest Strategy of Cystic Fibrosis Ireland

Cystic Fibrosis Ireland (CFI) understands that a decision on Orkambi and the extension of Kalydeco to 2-5 year olds will be decided within the next two weeks by the HSE Directorate. We understand that a revised offer has been made by the manufacturer (Vertex) and this is what is presently being discussed. 

In other words, negotiations are at an advanced stage and we must be careful on the one hand to keep up lobbying behind the scenes for these vital drugs but at the same time provide a space for the HSE and Vertex to reach an agreement and for the government to have a reasonable time to make a decision.  

It’s vitally important that the government gets the best deal on price possible, not least because there are other very promising CF ground-breaking drugs in the pipeline in the near future that will need to be resourced. 

It is therefore the view of the Board of Cystic Fibrosis Ireland which met on 28th of January that it would be better to give space for these negotiations but to support a further protest on 1 March if necessary. 

CFI understands the high level of anxiety among our members. This was heightened by an incorrect headline in the Irish Times of 1 February which wrongly stated that talks had broken down. Both the HSE and Vertex contacted CFI on the 1 February to say that this was incorrect and that negotiations are continuing and are at an advanced stage.

We understand that there will be a candlelight vigil held in some parts of the country on the 17th of February or on other dates. CFI wishes the organisers good will and the best of luck with this initiative and hope that it is successful in raising awareness. If you wish to support this initiative, please do so. 

However on balance, CFI believes it is better to give our official support to the protest that brings a lot of people together at a time when the national media and politicians are more likely to sit up and take notice. In this context we would propose that CFI members get fully behind a protest outside the Dail on the 1 March 2017 at 1.15pm. We very much hope that a positive decision in the meantime will mean that this protest can be cancelled. 

A small coordination group of all those active in the various Orkambi and Kalydeco groups will be held on Monday 13th of February to ensure a coordinated response. We have no idea as to whether these important therapies will be approved or not, but we do know that progress has been made and we ask for your continuing support for all of us to work together. Thanks for everyone’s contribution to date, it is much appreciated!

Philip Watt

CEO on behalf of Cystic Fibrosis Ireland 

7th February 2017