Sharon Keogan (Independent) | Oireachtas source

Every April, we in Duleek are blessed with a sea of purple. It is because, ten years ago next year, a family in Duleek lost their daughter through cystic fibrosis. Ann and Kevin Noone lost their daughter Kelley. We come together every year for a run in Duleek in memory of Kelley and her cousin Cathy, who also lost her life to cystic fibrosis. Both of them were teenagers. This week, I have been contacted by four parents who told me that a new and potentially life-saving medicine for cystic fibrosis has been approved by the European Medicines Agency for use by parents of children between six and 11 years of age. The treatment, Kaftrio, is an oral medicine designed to increase the quality and function of cystic fibrosis proteins at a cellular level, offering physicians a new treatment option for these young patients to help combat their condition as early as possible. There have already been remarkable results for patients who have opted for this new therapy. The manufacturing pharmaceutical company, Vertex Pharmaceuticals, has come to an agreement in respect of the supply of Kaftrio to Ireland for use by Irish children with cystic fibrosis, many of whom will be starting their course of treatment this summer. However, some parents recently learned that their children have been excluded from access to this medicine. Approximately 35 children with cystic fibrosis have been deemed ineligible. Two of them live in my area. Parents of the children have reached out to Vertex to avail of Kaftrio directly but, as it is outside the HSE scheme, such a supply would come at a steep premium. I understand that Cystic Fibrosis Ireland has reached out to both Vertex and the HSE on the issue as a matter of urgency, but if we were to write to the Department of Health and the Minister, Deputy Stephen Donnelly, on the matter, we might be able to help these 35 children. I would like the Leader to write to the Minister on this issue because he probably would not listen to me. I will send this on to him but her word would probably be a lot stronger than mine. This would be a huge benefit to these parents and children. Children with cystic fibrosis, particularly young girls, are dying younger. If we can save lives - this drug can do that - we should urge the Minister to allow those children to get this drug.