A South-East Clare mother insists her child’s life is being “held up by a loophole in a contract and an argument about money”.
A South-East Clare mother insists her child’s life is being “held up by a loophole in a contract and an argument about money”.
James Fitzpatrick was diagnosed with Cystic Fibrosis at just three and a half weeks old.
The now eight year-old from Sixmilebridge undergoes an hour of treatment every morning before school and another hour in the evening, as part of efforts to prolong his life.
CF is progressive, which means that up until now, it would progress in his body no matter what steps were taken to treat the condition.
When Kaftrio came on stream, there were unprecedented results in trials and James’ mother Emma believes it’s the closest thing they’ll get to a cure.
The life-changing drug was given EMA approval for a different cohort in March, but just when the drug was within touching distance, James’s family and 34 others were informed their children would be excluded.
This was a result of a disagreement between the HSE and manufacturers Vertex.
An application has been made in the past five weeks for James’s cohort and a decision is awaited.
James’ mother Emma says they were absolutely devastated to receive a phone-call at the eleventh hour and says her child’s life “is being held up by a loophole and an argument about money”.
The Health Minister is now being called on to ensure that all children with Cystic Fibrosis have access to Kaftrio.
Clarecastle Fine Gael TD Joe Carey raised the matter at his party’s parliamentary party last night, where his motion for the Tánaiste to engage with the Minister for Health on it received broad support.
Deputy Carey says he’s received assurance from Minister Stephen Donnelly that he’s determined to resolve the issue.
Listen back to the full interview here:
