A South East Clare mother says a year’s worth of preventable damage has been done to her son due to delays in accessing a ‘life-changing’ cystic fibrosis drug.
An ongoing price dispute between the HSE and pharmaceutical company Vertex has led to 35 children, including two in Clare, deteriorating in their illness.
140 children with cystic fibrosis in Ireland are currently in receipt of Kaftrio, a drug which has been labelled as ‘life-changing’ due to its ability to prevent symptoms from worsening.
However, 35 children have been prevented from accessing the drug as they have a different genotype, despite evidence which suggests the drug works even better for these children.
8-year-old James Fitzpatrick from Sixmilebridge and 6-year-old Hazel Buckley from Ennis are two of the children left in limbo waiting to receive the medication.
A row over the cost of providing the drug has been ongoing between the HSE and Vertex since May, with the HSE now saying that a health technology assessment (HTA) is needed before the medicine can be provided to the 35.
Emma Fitzpatrick, mother to James, is calling on the HSE to provide clear timelines for progress updates.
She says her son has been left detioriate for a year due to the delays.
An Ennis mother is calling for interim access to be made available to Kaftrio if the health technology assessment isn’t expedited.
Barbara Buckley had hoped her daughter Hazel would have access to Kaftrio by the time she turned six, however, now there’s no indication as to when she’ll receive the drug.
Barbara says while Kaftrio can stop symptoms from worsening, it can’t turn back the clock on damage already done.
Clare’s Fine Gael TD is calling on the Health Minister to ensure that a price dispute over a life-changing cystic fibrosis drug is addressed in tandem with the execution of a required assessment of the medication.
Clarecastle TD Joe Carey is calling for talks around the cost of the drug to continue while the assessment is ongoing.
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