Orkambi update

Orkambi update

CFI has recently written to the Minister for Health to urge once again that the negotiations on Orkambi and the extension of Kalydeco are concluded in a positive way for our members as soon as possible and to remind him and the government of the importance of these drugs to our members.

Background note:

Cystic Fibrosis Ireland has undertaken significant lobbying on this issue including:

  • Two meetings with the Minister for Health and Senior Officials
  • Meeting with 56 TD’s from all political parties
  • A comprehensive survey and submission to the National Centre for Pharma-Economics (NCPE)
  • Meetings with the NCPE
  • Media statements and coverage on both national TV and local and national radio and other advocacy at a local and national level.

 

We acknowledge and thank patient advocates and parents who have been active on this crucial issue and we will bring you news as soon as we hear the outcome from the negotiations.

Philip Watt
CEO CFI