As CFI members will know, in a very welcome move, the European Medicines Agency (EMA) approved the extension of Kaftrio on 12 January 2022 for eligible children with CF aged 6 to 11 years old in the European Union (and the UK). Under the  Portfolio/Pipeline Agreement that was strongly supported by CFI in 2017, this extension will soon be enacted in Ireland. Going on the experience for previous extensions of Kaftrio, CFI estimates that it will be this summer when this important medication will be available to children in Ireland. It usually takes about 6 months to complete all the introductory preparations at both HSE/High Tech Hub and Hospital levels. At this point (April 2022) there have been no delays reported to CFI from all our sources and this summer remains the expected arrival time for this particular extension of Kaftrio. We know from previous experience this is an anxious time for parents waiting to get access to this important therapy, so we have written to the HSE to urge that they give a more precise indication of when Kaftrio will be expected to allay such anxiety. 

Just to remind you that each child will need to be assessed by their CF team for suitability for Kaftrio based on factors such as age, genotype compatibility and other health factors. As with all drug therapies, parents should discuss any possible side effects with their teams. It should be noted again that not all children with CF will be able to access Kaftrio and CFI will continue to support the development of other therapies, such as those outlined at our recent annual conference. The need to adhere to other prescribed medications and exercise was also emphasised at our recent conference. Conference proceedings that will shortly be online on our website. We will of course keep you updated about further progress.