This third edition of the Cystic Fibrosis Registry Annual Report represents a great achievement for the South African Cystic Fibrosis (CF) community, who initiated the registry project in 2018. The relevance and importance of the registry and the information we document through publication of this report cannot be more emphasized in this new era of CF treatment with CFTR modulators.
While we do not yet have sufficient longitudinal data to identify patterns or trends of CF care and outcomes in South Africa, we can begin to compare how people with CF in South Africa are doing in comparison to their counterparts in other parts of the world, who are being treated with CFTR modulators. Real-life experience and data on the profound impact of CFTR modulators on people with CF is transforming CF from a serious condition with limited life expectancy to a manageable chronic condition where projected life-expectancy and health is rapidly improving.
The South African CF community is living through both an exciting and frustrating time where some families with means are taking the extraordinary step of travelling to Argentina to collect medication for their loved ones. At the same time, South Africa leads the way for other low-and-middle income countries with legal challenges to break the monopoly of CFTR modulator drugs which is protected by international patent agreements. There is much to be optimistic and proud about, but at the same time the stark realities of growing disparities between rich and poor cannot not be ignored. The registry reports will continue to be important ammunition as we move forward with improving CF care for South Africans.
We thank the many contributors, CF families and colleagues who graciously continue to support and share their data toward the South African Cystic Fibrosis Registry.