LATEST NEWS FAQs on The Exclusion of 35 children with CF from Kaftrio
What is the current status of the pricing dispute between the HSE and VERTEX? There is still no breakthrough on this issue at time of writing (27 June 2022). It remains completely unacceptable that 35 children continue to be excluded from access to Kaftrio, particularly when expectations were raised that these children would gain access at the same time as 140 other children with CF in May 2022. However, talks between the HSE and VERTEX continue and the matter has still not been referred to the NCPE for a full HTA, a move that would further delay access. The inequity of this dispute is further underlined by the fact that children with CF aged 12 and over with the same genetic alterations, presently get access to Kaftrio.
Why were 35 children excluded from Kaftrio? The excluded 35 children all have a particular genotype combination that includes F508del and a minimal or unclassified altered gene. This group were not included the 2017 Orkambi-Plus Portfolio deal (as amended in 2019). According to the HSE, ‘What we tried to achieve is that we wanted access to all of the VERTEX portfolio within the resources available to the HSE. We sought to include every drug in the portfolio deal. Vertex was unwilling to do so’ (Examiner, 22 June).
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