TWO Clare children with Cystic Fibrosis who have a rare genotype are being “discriminated against” due to their exclusion from availing of a transformative “wonder drug”, a local councillor has claimed. The HSE has been in negotiations since May with Vertex about giving access for a therapy called Kaftrio for 35 young children with a specific genetic condition. This is already available to other Irish patients under an existing deal. Councillor Mary Howard described Kaftrio as a “wonder drug” that stops the progression of Cystic Fibrosis in the body. She warned that many of the 35 children are not well and have been regularly hospitalised, with more hospital visits expected to increase as the winter progressed. Speaking at a council meeting on Monday, the Fine Gael Councillor said adults and those 12 and older have been receiving Kaftrio. Last May, she recalled all children who were older than six were supposed to receive this drug. “There are 175 children with …
Read More »