Cystic Fibrosis Ireland has urged the Health Service Executive and a pharmaceutical company to resolve a pricing dispute that has prevented 35 children with the disease from access to potentially life-changing treatment.
The charity said it was deeply concerned over the exclusion of the children, aged between six and 11, from treatment with the drug Kaftrio.
It says 140 other children with CF in Ireland, in the same age-group but with a different genotype, have already gained access to Kaftrio.
"As we understand it, 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," said CF Ireland chief executive Philip Watt.
“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.”
‘Pawns in pricing dispute’
According to Mr Watt, Vertex is seeking an “enhanced price” for the 35 children concerned. The HSE has been unwilling to accept this price and has instead referred the matter to the National Centre for Pharmacoeconomics.
“Once again children with CF in Ireland are the pawns caught up in a pricing dispute between pharma and the HSE,” said Mr Watt.
“We implore the HSE and Vertex to resolve this issue quickly and to extend the agreement to all children with CF to ensure that the children concerned get immediate access and that this problem does not happen again.”