Analysis of Annual Global Survey Reports for Haemophilia B in the Eastern Mediterranean Region: Disparities in Trends for A decade (2014–2023)

INTRODUCTION: Haemophilia B (HB) is a single-gene bleeding disorder caused by deficiency of coagulation factor IX. This study aimed to estimate the trends in the observed prevalence and the treatment patterns of HB in the East Mediterranean Region (EMR) countries over a decade (2014 to 2023) and across income groups. METHODS: Data were extracted from World Federation of Haemophilia Annual Global Survey reports for EMR countries that reported data on Persons with Haemophilia B (PWHB) for at least five years during the decade. Trends in the observed prevalence, percent of observed-to-expected cases, severity, percent of children, and factor IX usage were estimated over the decade and compared across income groups. Data from 14 countries were analyzed. RESULTS: The country-specific observed prevalence of PWHB ranged between 0.3 to 2.6 per 100,000 males, while the mean observed prevalence of PWHB significantly increased from 1.18 to 1.73 per 100,000 males during the decade (p = 0.003). The observed prevalence significantly varied by income groups also (p = 0.002). A significant gap between the identified and expected PWHB cases remained throughout the decade. Almost half of the individuals reported severe PWHB and a similar proportion were children, which varied across the countries. The mean proportion of children with PWHB changed from 61% in 2014% to 51% in 2023, although not significant. Mean per capita factor IX utilization increased during the decade, however was low (0.29; SD 0.18), below the recommended level of 0.5. CONCLUSION: Although observed prevalence of PWHB increased over the decade, substantial gaps persist in diagnosis and treatment across the income groups. The substantial proportion of paediatric cases suggests the importance of paediatric Haemophilia services. Low treatment utilization and disparities across income groups highlight the need for strengthened surveillance systems, improved awareness, and expanded access to care across the EMR region.