Haemophilia in the developing countries: the Iranian experience

Area of Science:

• Hematology
• Public Health
• Global Health

Background:

• Management of haemophilia and inherited bleeding disorders poses significant challenges in developing nations due to product scarcity, high costs, and health infrastructure issues.
• Local expertise development is crucial for improving outcomes and reducing mortality/morbidity in these regions, yet data on demographic and organizational models for haemophilia care are scarce.
• This comprehensive report details the status and management of haemophilia in Iran.

Purpose of the Study:

• To provide a comprehensive report on the status and management of haemophilia in Iran.
• To compile available data on patients with haemophilia (PWH) in Iran, including their health status, management plans, organizations, treatment products, facilities, and care challenges.
• To inform strategies for improving haemophilia care in developing countries.

Main Methods:

• A complete review and compilation of published or available data on patients with congenital bleeding disorders in Iran were conducted in 2007.
• Data were collected by the Management Center of Transplantation and Special Diseases (MCTSD) of the Ministry of Health of Iran.
• The review focused on health status, management planning, organizations, treatment products, facilities, and care problems.

Main Results:

• 6496 patients with congenital bleeding disorders were registered, primarily with haemophilia A, B, and von Willebrand disease (vWD).
• Rare bleeding disorders were observed more frequently than anticipated, with inhibitor development rates between 14-28%.
• Factor products and facilities were found to be relatively available, with a consumption of over 1.5 units per capita.

Conclusions:

• A national formulary, tailored to the country's resources, should be established and implemented.
• Collaboration among the Ministry of Health, universities, and non-governmental organizations is essential for effective haemophilia care.
• These findings can guide advocacy efforts and care improvements in other developing countries.