Hereditary angioedema (HAE) is a rare, potentially life-threatening condition, with an estimated prevalence of 1 in 50,000 individuals. Despite global advances in diagnostics and treatment, data on HAE in sub-Saharan Africa remain scarce, highlighting a critical gap in awareness, diagnosis, and access to modern therapeutics in the region.
This study aims to assess the current HAE landscape across a sample of sub-Saharan African countries, focusing on the number of diagnosed patients, availability of diagnostic testing, and access to prophylactic and acute treatments.
Doctors from the HAE African Regional Medical Advisory Panel (RMAP) completed a short survey covering: (1) Number of diagnosed HAE patients; (2) Available prophylactic and acute treatments; (3) Availability of diagnostic tests (local or abroad).
16 countries participated in the survey. The number of diagnosed HAE patients ranged from 0 to 117 per country. Diagnostic capabilities were limited, with C1 inhibitor levels and function tests often sent to South Africa (SA), Europe, or the USA. C1 inhibitor function testing was largely unavailable locally and for research in SA. While basic emergency treatments such as fresh frozen plasma (FFP), tranexamic acid, and danazol were widely available, access to modern HAE-specific therapies (e.g., icatibant and Ruconest) was restricted to only three countries—Kenya, DRC, and SA. SA and Kenya host Angioedema Centers of Reference and Excellence (ACARE). Overall, diagnostic services were mostly provided through private laboratories, with minimal integration into public health systems.
This study highlights the significant underdiagnosis of HAE in sub-Saharan Africa and the substantial disparities in access to diagnostic testing and modern treatments. The findings underscore an urgent need for increased awareness, improved public sector diagnostic infrastructure, and equitable access to guideline-recommended therapies. Regional adaptations of international HAE management guidelines may be necessary to address local resource constraints and improve outcomes for affected individuals.
