Statement from Cystic Fibrosis Ireland
Cystic Fibrosis Ireland Calls on HSE and Pharma Company to Return to Negotiation Table as 35 Children with Cystic Fibrosis Excluded from Accessing Life-changing Drug, Kaftrio, in New Pricing Dispute
Date of issue: Wednesday, May 18 2022
Cystic Fibrosis Ireland has today expressed its deep concern that 35 children with cystic fibrosis (CF) aged between six and 11 years have been excluded from accessing the life-changing CF drug therapy, Kaftrio, due to a new pricing dispute between Boston-based pharmaceutical company, Vertex, and the Health Service Executive.
Cystic Fibrosis Ireland believes that this development is all the more unfair because 140 other children with CF in Ireland in that exact same age group, but with a different genotype, have already gained access to Kaftrio.
Philip Watt, CEO, Cystic Fibrosis Ireland, comments:
“This dispute has been crushing news to the parents of the 35 children concerned. Cystic Fibrosis Ireland understands that the reason these children have been excluded is because of their genotype, and that they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017.
“Specifically, the 35 children excluded have a particular genotype combination that includes a minimal or unclassified gene which was not included in the original agreement. Cystic Fibrosis Ireland understands that Vertex is currently seeking an enhanced price for the 35 children concerned, which is different to the price charged for all other children and adults under the Portfolio Agreement. As a result, we understand that the HSE has been unwilling to accept this price and has instead referred the matter to the National Centre for Pharmaco-Economics (NCPE).
“The Portfolio Agreement fixed the price of a suite of drug therapies, including extensions based on age or genotype. It has prevented the ongoing disputes that once dominated access to previous CF drugs such as Orkambi. Until this matter is resolved, it means that the children affected will continue to experience significant delays in accessing Kaftrio and the enhanced quality of health and life that it brings.
“Once again children with CF in Ireland are the pawns caught up in a pricing dispute between pharma and the HSE. This is all the more heart-breaking because 140 other children with CF of the same age, but with a different genotype, recently secured access to Kaftrio. Going back to the old ways of doing business in negotiating access to life-changing medicines is simply unacceptable. We implore the HSE and Vertex to resolve this issue quickly and to extend the Portfolio Agreement to all children with CF to ensure that the children concerned get immediate access and that this problem does not happen again.”
ENDS
Issued on behalf of Cystic Fibrosis Ireland by:
Don Delaney, director, d2 communications, tel.: 01 910 8987 / 087 793 3249
Philip Watt, CEO, Cystic Fibrosis Ireland, is available for interviews, tel.: 087 6370557