CLARE parents of children with Cystic Fibrosis have told of their fears for their childrens’ future if they cannot access a “miracle” drug at the centre of a dispute between the Health Service Executive and a pharmaceutical company. Cystic Fibrosis Ireland estimate that around 140 children aged six-years-old to 11-years-old are already are on the drug Kaftrio, but 35 children with a particular genotype are not as they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017. Emma Fitzpatrick from Sixmilebridge is mother to eight-year-old James and says the drug would mean “everything” to their family, improving her son’s quality of life. She was “devastated” when she received a call from James’ consultant to say that he would not be getting the drug. “Literally you have your fingertips on this miracle – and it is a miracle to us. It is not a cure, but it’s the nearest we will ever get to …
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