CFI Statement in relation to Cystic Fibrosis and Pat Kenny Show
Cystic Fibrosis Ireland urges the Pat Kenny Show to clarify that the reason why Ireland has the highest rate of cystic fibrosis (CF) in the world is because we have the highest incidence of people carrying the CF altered gene in the world and not for the reason stated on last night’s programme (Wednesday, October 4th).
CF is an inherited genetic condition that requires both parents to carry the gene. If both parents are carriers, they have a one in four chance of conceiving a child with CF.
Approximately 1 in 19 Irish people carry the CF altered gene. This compares with 1 in 25 in the U.K.
The Pat Kenny Show has been a very important programme for highlighting the challenges for people with cystic fibrosis, services that needed to be improved and more recently access to drugs in Ireland. We thank Pat for this role over many years - he is a true friend of CF. However, the comment made on last night's programme has caused significant concern in the CF community - we know that no offence was intended by Pat, but his comment should be clarified by the programme.
It should be further noted that people with cystic fibrosis are living increasingly longer and fuller lives thanks to better services and new drugs such as Orkambi and Kalydeco and the fantastic support of the Irish public. This should provide a lot of reassurance to parents who have recently been told their child has CF.
Cystic Fibrosis Ireland