Društvo za cistično fibrozo Slovenije

I would like to use this opportunity to share very important news with you. In Slovenia, CF patients have access to new CFTR modulators. Vertex and the Health Insurance Institute of Slovenia have reached an agreement on funding the drugs. So, 18 critically ill patients older than 12 and having at least one F508del mutation started taking Trikafta on 17 August 2020. Since November 16, 2020, the combination of Kaftrio and Kalydeco has been available for all other CF patients. The drugs are fully covered by the compulsory health insurance. 88 % of CF patients in Slovenia have at least one F508del mutation, however, the patients younger than 12 and those who have undergone transplantation, are not eligible for Kaftrio. In addition, all CF patients under 12 years of age having two F508del mutation have access to Orkambi from May 15, 2020. Our patients who are eligible for these new medicines report on beneficial effects. Their quality of life has improved, they have more energy and cope with the efforts that had been impossible before. Their lung function has improved, the mucus has thinned, they do not cough and some of them have gained weight.