A Ballinasloe mother says her two young daughters are being deprived of living a normal life by the failure of the HSE to agree a new drug deal for people with Cystic Fibrosis.
Grainne Ui Luing whose two young daughters have CF says they and 33 other children with the condition have been left off a list of approved people because their particular rare gene has not been included in the previous deal.
The HSE and Vertex struck a deal five years ago to provide Kaftrio to CF patients, and it has been a life changing experience for those approved since then.
Both sides have been arguing about the cost of including 35 patients in the 6 to 11 year old age group since May of this year and it means the drug isn't available to Grainne's two children.
Speaking on the Let's Talk show today she says every day that the children are not on this drug means a day when they are at risk of catching an infection which could have very serious consequences for them.
'It's the smallest number, it is 35 children, and they're just looking at figures and numbers, and my two kids are not a number, they're not a figure, they need their life, they need to live.
The girls could simply pick up a bug tomorrow and that could land them in hospital for weeks, even months.
It could cause huge damage to their lungs, soevery day we wait for them to make a decision , is another day longer, and it's a day off the other end of their lives.'
