Statement from Cystic Fibrosis Ireland following meeting today with Minister for Health in relation to “Kaftrio 35” dispute
Date of issue: Thursday October 27 2022
Cystic Fibrosis Ireland today had a constructive and forward-looking meeting with the Minister for Health, Stephen Donnelly TD.
The meeting was held in the context of the ongoing dispute between the HSE and Vertex Pharmaceuticals which has seen 35 children with cystic fibrosis, between 6 and 11 years, denied access to the ground-breaking Kaftrio therapy.
This is notwithstanding the fact that 140 other children in the same age group are accessing Kaftrio right now in Ireland, but who just happen to have a different genotype, with the HSE and Vertex arguing over which genotype was included in the original deal.
The meeting included powerful testimony from a parent representative of two children with cystic fibrosis who are eligible for Kaftrio, but for whom it is currently denied. The Minister also heard the expert opinion of a leading cystic fibrosis paediatric consultant, along with insights from the chairperson of Cystic Fibrosis Ireland on the many children and adults who have benefitted from Kaftrio, in contrast to the experience of the 35 excluded children.
Philip Watt, CEO of Cystic Fibrosis Ireland, comments:
“The exclusion of these 35 children has been cruel and remains a matter of utmost concern to Cystic Fibrosis Ireland and to the parents of the children impacted by this dispute.
“Cystic Fibrosis Ireland urged the Minister to consider the possibility of allowing immediate access to Kaftrio for the 35 children, without prejudice to a final agreement on pricing. We further urged the possibility of seeking international arbitration to resolve the present impasse.
“The meeting noted the strong statement from cystic fibrosis consultants published today and their collective concern to see the dispute resolved as soon as possible for the sake of the impacted children. The statement points to the potential for this dispute to damage excellent relationships and partnerships built up over many years, ‘that has brought us to the exciting position we are at in CF in 2022’. The statement also highlights the clear responsibilities of the Pharmaceutical company, Vertex, to ensure this dispute is resolved.”
ENDS