Access to cystic fibrosis treatment must be extended to all children – Buttimer

All children with cystic fibrosis across the country must have access to the life-changing Kaftrio drug therapy, a Fine Gael Senator has said.

Cork Senator Jerry Buttimer raised the issue in the Seanad, saying, “A total of 36 children between the ages of six and eleven are being excluded from access to the drug Kaftrio. It makes no sense as to why any children would be excluded, as the treatment prevents damage to the lungs and presents life-changing benefits.

“Cystic fibrosis can significantly diminish the quality of life as well as life expectancy of young children who have the condition. However, I know a number of children who have benefited enormously from this new medication Kaftrio, which allows cystic fibrosis patients to live a relatively normal life. For those who have access to the treatment, their quality of life has been enhanced beyond belief.

“For those who do not have access to Kaftrio, however, it is an incredibly frustrating issue – knowing that there is a treatment readily available but due to a dispute, they cannot benefit from it.

“The pandemic has taught us how to change the way we operate and do things differently. I am sure we can apply a pandemic-style approach to this matter to ensure that the progress made continues and access is opened to all.

“Cystic Fibrosis Ireland, which has done an extraordinary amount of work and advocacy on this matter, has asked the HSE and the pharmaceutical company to return to the negotiating table to ensure that the remaining 36 children can access this life-saving drug.

“This is about enhancing the quality of life of young people, ensuring we do not allow further damage to their lungs and pancreas. Cystic Fibrosis Ireland asks that the children in this case are not used as pawns in a disagreement between a pharmaceutical company and the HSE.

“I fully support these calls from Cystic Fibrosis Ireland and ask that the Minister of Health and the HSE work to ensure all children with cystic fibrosis in Ireland can live a life free from worry and concern.”