Over 8,500 people across the country have signed a petition demanding 35 Cystic Fibrosis children be given the life-saving drug Kaftrio.
The kids - all aged six to 11 - are losing out because of a row over money between the pharma company involved Vertex and the HSE.
The new drug costs €100,000 a year per child.
But these youngsters have been excluded as they are deemed outside the terms of the existing contract because they are of a different genome type.
CF Ireland confirmed there is no breakthrough yet in the pricing row, however Vertex has agreed to meet them on June 10 at an international conference.
Furious mum Sarah O’Keeffe set up the petition after her brave seven-year-old Charlie was denied Kaftrio - a drug that would completely transform his life.
She urged both the HSE and the manufacturer to meet again and sort out their differences.
They have so far met five times and failed to resolve the issue.
Sarah said: “The lives of our children are at stake here, and we need to have this drug.
“We were led to believe by the HSE that the children were getting it but then the plug was pulled at the 11th hour after they had gone to Crumlin Hospital for blood and sweat tests.”
140 other CF children with a different type of geno are covered by the deal and are getting Kaftrio.
But CF Ireland said every child with the disease must get it and no one should be excluded.
The HSE has implied the drug is too expensive for the taxpayer, although it is committed to securing all medicines available for all sick children.
Sarah added: “Kaftrio will save the State a fortune long term because it will reduce hospitaltions , less medications, IVs and carers.
“It is not the fault of our families that for whatever reason our children were not included in the contract.
“How can they choose between one child and another and blame it on the child’s genome?
“A genome that was already proven by the FDA and the EMA that our children will benefit from Kaftrio.”
Vertex said any chance of a settlement for the 35 kids will be delayed because the HSE has decided to refer each case to the NCPR for a full health technical assessment.
CF Ireland is still waiting to get a face to face meeting with health minister Stephen Donnelly to discuss the issue.
He recently told the Dail: “This issue is very much of concern to the 35 children involved and their families.
“I am engaging with the Department and the HSE on this. The HSE has statutory responsibility for decisions on pricing and reimbursement on medicines under the community drug scheme and for administration of this scheme.
“Reimbursement is for the licensed indications which have been granted market authorisation."
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