CLARE Fine Gael TD Joe Carey has called on Health Minister Stephen Donnelly to ensure that all children with Cystic Fibrosis will have access to the life-changing Kaftrio drug therapy.

Highlighting the case of eight year-old James Fitzpatrick from Sixmilebridge, Deputy Carey told Minister Donnelly that James was one of only 35 Irish children between the ages of six and eleven excluded from access to the drug because of a disagreement between its manufacturers, Vertex, and the HSE.

“These children’s age and genotype combination were not included in the original deal between the HSE and Vertex who are now seeking a higher price from the HSE to provide access to the drug for these 35 children,” he explained.

“Kaftrio can make an extremely precious life-changing impact in the lives of Cystic Fibrosis patients. It can stop the progression of CF and actually reverse some of the effects.

“Emma and Stiofán Fitzpatrick have waited for years for their son to have access to Kaftrio as have the other 34 Irish families who are currently being denied access to this crucial drug.

“The delay in making the drug available has nothing to do with its effectiveness, it’s simply due to a disagreement over price. I am asking you to intervene in this dispute and ensure access to Kaftrio for these 35 children at the earliest opportunity,” Deputy Carey added.

In a subsequent statement, the Clarecastle TD said that it made no sense that any child would be excluded, as the treatment prevents damage to the lungs and presents life-changing benefits.

“Cystic fibrosis can significantly diminish the quality of life as well as life expectancy of young children who have the condition. Kaftrio allows them to live a relatively normal life and lightens the overwhelming weight of stress and anxiety on their families. 

“For those who do not have access to Kaftrio, it is an incredibly frustrating issue  – knowing that there is a treatment readily available but, because of a dispute, they cannot benefit from it.

“The Covid pandemic has taught us how to change the way we operate and do things differently. I am sure we can apply a pandemic-style approach to this matter to ensure that the progress made continues and access is open to all.

“Cystic Fibrosis Ireland, which has done an extraordinary amount of work and advocacy on this matter, has asked the HSE and Vertex to return to the negotiating table and ensure that the children in this case are not used as pawns in a disagreement over money.

“CF Ireland chief executive Philip Watt believes that this development is all the more unfair because 140 other children in that exact same age group, but with a different genotype, have already gained access to the drug with hugely beneficial effects,” Deputy Carey concluded.

PHOTO CAPTION: Cystic Fibrosis chief executive Philip Watt with Deputy Joe Carey at the launch of the Cystic Fibrosis ’65 Roses’ campaign.