CFI understands from reliable sources that the HSE and Vertex met again this week in the latest round of negotiations on the price of Orkambi.

We understand that progress is being made, but whether this progress will be sufficient to secure a deal remains unclear. The positive news is that negotiations are continuing on an active basis.

CFI has called for these negotiations to be concluded as soon as possible and a fair deal for both parties is reached as this decision is of immense importance to people with CF and their families in Ireland. Cystic Fibrosis Ireland has also made representations to the HSE on the importance of commencing (as soon as possible) negotiations on the extension of Kalydeco to 2-5 year olds which impacts on 18 children with CF in Ireland. We will continue to keep our members updated on both these issues.