- Life-changing drug to be issued to all 6-11 year old CF sufferers
- Brings to end a lengthy campaign
Fianna Fáil TD for Clare Cathal Crowe has welcomed confirmation that the HSE has approved the Kaftrio drug for children with cystic fibrosis between the ages of 6 and 11, who previously fell outside the eligibility criteria.
After lengthy engagements with the drug manufacturer Vertex, the HSE has confirmed that the cohort of children who were missing out can finally access the drug.
“This is a monumental day for the children and families impacted by CF that heretofore have been unable to access this life-changing medicine,” said Deputy Crowe.
“Just 35 children across the country were locked out of this drug and the battle fought in particular by their parents must be hugely commended.
“Their frustration, rightly so, was grounded in the fact that 140 children in the same age bracket but with a different genotype were entitled to avail of the drug, while their kids – who are heterozygous for the F508del mutation and either a minimal function mutation, or an unknown mutation, were not.
“I have no doubt that the 35 children who can now utilise this drug will have a much better quality of life as a result.
“It’s vital that we do all we do all we can to improve the outcomes for people suffering from cystic fibrosis.
“Ireland has the highest incidence of this condition in the entire world, with one in every 1,353 suffering from it so those living with the condition, and their families, need to see unequivocal support from the HSE and the government to improve their lives.”