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*FAQs on The Exclusion of 35 Children with CF from Kaftrio

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Philip Watt, Chief Executive

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*CFRI Report 2020 *The CFRI There is an well-known saying in legal circles that ‘justice delayed is justice denied.’ The same can be applied to healthcare, particularly where there is a human rights dimension.

The exclusion of 35 children with CF from Kaftrio is very much a human rights issue. The inequity of the pricing dispute that caused this problem is further underlined by the fact on the same day that 35 children were denied access, a further 140 other children with CF successfully gained access to Kaftrio.

CFI continues to say to those impacted children and their families, ‘we are here with and for you. We will not give up until your rights are vindicated’.

CFI is also striving for ‘future proofing’. No other child with CF should endure the same devastation of being excluded from a drug therapy that has been recognised as revolutionising CF care in Ireland and many countries worldwide.

Ukraine

CFI is pleased to let you know that 3 people with CF from Ukraine are now in Ireland receiving help and care. We have also donated €10,000 to date to support coordinated efforts at a European level, including the direct delivery of medications and support for the Ukraine CF Association. CFI thanks everyone for their support including during 65 Roses week and we will be making a further donation soon.

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EDITORS: Samantha Byrne & Nicola Delaney Foxe Philip Watt, CEO, CFI

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).