Three-year-old Keya lives with thalassemia major. Since infancy, she has required monthly blood transfusions to survive. For her family, each month brings the same urgent question: where will the next unit of safe blood come from? Keya's story is not an isolated tragedy -- it reflects a silent public health crisis affecting thousands of families across Bangladesh.
International Thalassemia Day will be observed on May 8. The theme of this year is "Hidden No More: Finding the Undiagnosed. Supporting the Unseen."
Thalassemia is an inherited (genetic) blood disorder and one of the most common genetic diseases worldwide. In Southeast Asia, particularly in Bangladesh, Hb-E and Hb-Beta thalassemia are predominant. According to the National Thalassemia Survey 2024, approximately 11.4 per cent of the population are carriers -- equating to nearly 20 million people in a population of 170 million. Each year, an estimated 11,000+ children are born with thalassemia. Currently, around 550,000 individuals are living with clinically significant thalassemia in Bangladesh, with nearly 60 per cent dependent on regular blood transfusions.
This high disease burden is largely preventable. The key drivers are well recognised: lack of awareness, marriages between two carriers, and the cultural acceptance of consanguineous unions. Importantly, carriers themselves are asymptomatic and lead normal lives; they require no treatment. However, when two carriers marry, there is a 25per cent risk in each pregnancy of having a child with thalassemia major and a 50 per cent chance of producing another carrier. Despite this clear genetic pattern, screening before marriage remains uncommon.
For affected individuals, the clinical journey is lifelong and demanding. Regular blood transfusions are essential to maintain adequate hemoglobin levels, often beginning as early as six months of age. Over time, repeated transfusions lead to iron overload, necessitating continuous chelation therapy. Without proper management, complications involving the heart, liver, and endocrine system are inevitable. Yet, in many developing settings, only a small fraction of patients receive optimal care due to limitations in infrastructure, affordability, and access.
Curative therapy exists -- bone marrow (stem cell) transplantation. When performed early, particularly in younger patients, it offers cure rates approaching 80 per cent. Evidence also suggests that, over time, transplantation may be more cost-effective than lifelong transfusion and chelation. However, access remains limited by cost, donor availability, and specialised facility requirements.
Prevention - The Most Cost-Effective Strategy:
Given these realities, prevention is not merely an option -- it is a necessity. A coordinated national strategy must be prioritised:
* Carrier detection programs through population-based screening
* Premarital testing to identify at-risk couples
* Prenatal diagnosis within the first trimester (10-12 weeks)
* Genetic counseling to guide informed reproductive choices
* Public awareness campaigns to normalise screening and reduce stigma
* Integration into educational curricula to build long-term community understanding.
Lessons from global experience: Countries such as Cyprus, Iran, and Italy have demonstrated that structured screening, premarital counseling, and prenatal diagnosis can reduce the incidence of thalassemia major by over 90 per cent. These models provide a feasible blueprint for Bangladesh, with appropriate contextual adaptation.
Bangladesh can achieve thalassemia prevention but it requires political commitment, healthcare system strengthening, and societal engagement.
Thalassemia is not just a medical condition; it is a societal challenge. Preventing it demands collective responsibility -- from policymakers and healthcare providers to educators, community leaders, and families. Transforming awareness into action is the only way forward.
Keya's future -- and that of thousands of children like her -- depends on what we choose to do today.
The writer is Hematologist
& BMT Specialist, and advisor, Bangladesh Thalassemia Samity. Dhaka, BD
