CFNFC is the SACFA subcommittee tasked with facilitating access to affordable CF drugs for patients in South Africa, with an initial focus on CFTR modulators such as Trikafta. Over the past few months of research and legal consultation, the committee has formulated a strategy and there are various initiatives in progress. The hurdles to be overcome should not be underestimated, with the setting of an affordable price being a major challenge. The current price to bring in a year’s supply of Trikafta is around R6million.
Although still in the early stages, the committee is pleased to announce that they have opened an introductory engagement process with Vertex Pharmaceuticals. The committee intends to build meaningful relationships with various stakeholders, including medical aids and the Health Department, and will endeavour to communicate any progress timeously to the CF community.
CFNFC will represent the South African CF community as a collective, and will head negotiations with Vertex to facilitate affordable access to Trikafta and other treatments for all CF patients. It is important that all interesting parties move forward as a united force to overcome a number of major challenges in this complex process.
Access to this exciting new drug would represent a significant and exciting development for SACFA, CFNFC and CF families alike.
For any CFNFC queries, parents and patients are welcome to connect with Belinda Nell (CFNFC Secretary) via email at firstname.lastname@example.org