Every year on April 17, the World Haemophilia Day provides a unique opportunity for health experts, haemophilia patients and other stakeholders in Bangladesh to come together and raise awareness about haemophilia and other inherited bleeding disorders.
This year, the theme of the World Haemophilia Day is outreach and identification, and the tagline is, "Reaching Out: The First Step to Care". Patient outreach and identification are about finding and supporting individuals with haemophilia or other bleeding disorders-including Von Willebrand Disease (VBD)-those who have not been diagnosed yet, or whose health needs are not being met by healthcare services.
The World Federation of Haemophilia (WFH) has made substantial progress in supporting the identification of new patients, but much is left to be done to ensure proper care to all who live with bleeding disorders. Over the last 50 years since its initiation, the WFH has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including haemophilia, VBD, rare factor deficiencies, and inherited platelet disorders, no matter where they live.
Till date, 1,748 Haemophilia patients have been identified in Bangladesh. However, to go by the prevalence rate, there could be 11,000 haemophilia patients and people with other inherited bleeding disorders in the country.
Haemophilia has severe and spontaneous bleeding episodes requiring blood products and ideally specialised factor concentrates within hours of onset of bleeding to minimise damage, reduce the number of missed days of school or work and to minimise overall use of the resources if treated early. Bleeding can be life- or limb-threatening.
At the moment, many families have to travel with their affected child for many hours with painful and disabling acute bleeding to access care in the centre of nearby cities (Dhaka or Chattogram). The government is yet to purchase clotting factor concentrate for such patients in the country. Offering adequate treatment and care to patients will help the patients and their families.
In order to make a profound difference in the lives of people with haemophilia in Bangladesh, the government can consider taking the following steps:
These issues can be addressed in collaboration with key stakeholders including the Health Ministry, healthcare professionals (leading medical experts), the World Health Organisation (WHO), the WFH and patient associations.
S Satapathy is the Regional Manager, South Asia and East Asia of World Federation of Haemophilia (WFH).
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