HSE and Vertex agree that an HTA is now essential to enable access to Kaftrio for the 35 excluded children. CFI urges fast tracking and immediate access in the interim. 

Following the outcome of recent talks, CFI understands that both Vertex and the HSE are now agreed that a Health Technology Assessment (HTA) is an essential prerequisite to resolve the Kaftrio 35 dispute. 

CFI has written today to the HSE and Vertex urging the following: 

1. The HTA for the 35 children currently excluded from Kaftrio should be fast tracked because of the urgency of the issues involved and the avoidable delays to date. CFI further urges that the HTA is completed and a decision to reimburse is made before the end of January 2023. Given the unique circumstances of this dispute and the denial of healthcare to vulnerable children this is only fair and just
2. That in the interim, Kaftrio should be provided with immediate effect to the 35 children as a sign of good faith by both the HSE and Vertex, now that an end of this cruel dispute now appears more likely 
3. CFI will be making a robust patient group submission to the NCPE, the body that undertakes HTA’s on the effectiveness of Kaftrio, and will be seeking a meeting that includes parents of the children involved
4. CFI will closely monitor progress in completing the HTA.

CFI also urges the government improves access to rare disease (orphan designated) drugs for all rare disease groups in Ireland. This includes the establishment of the National Medicines Agency (promised in the current Programme for Government).