Children with severe illnesses must not suffer delays in accessing new medications due to paper work and cost negotiations.
Ballinasloe Woman Grainne Ui Luing is calling for a system to be put in place within the HSE to ensure vital medication is supplied to children in need of new treatments without the delays regularly encountered in the procurement process.
Grainne has two young daughters with Cystic Fibrosis who had been left off a list of approved people for the drug Kaftrio along with 33 other children.
The HSE and Vertex struck a deal five years ago to provide Kaftrio to CF patients, with major improvements recorded in young people with Cystic Fibrosis.
Both sides had been arguing about the cost of including 35 patients in the 6 to 11 year old age group since last year, with the tablets unavailable to Grainne's daughters Fiadh and Caoimhe during negotiations.
That deal has no been reached with the negotiations still ongoing over the roll out to children under 6 with cystic fibrosis.
Speaking to Let's Talk today, Grainne says the time lost in campaigning for and getting access to new treatments can have devastating effects for children's heath.
The fact that we have to fight and battle and actually it took a year for us and that in terms is the short time but we can't get this time back with our kids and I have spent a year campaigning on this. I don't get that time back and trying to keep my kids well.'
