Community-based approach for thalassemia patients: a perspective from Bangladesh

Abstract Purpose Thalassemia disease causes long-term challenges for affected families in Bangladesh, both medically and financially, which becomes more complicated with uncertain diagnosis, gaps in access to follow-up care, and low awareness. In Jamalpur District, Bangladesh, we have developed and assessed a community-based support system for thalassemia patients to help overcome such barriers. Methods This model connects a curated patient registry with a volunteer blood donor network and treatment support from a Hospital. For this study, families were enrolled through a knowledge-sharing seminar, where patients provided blood samples for hemoglobin electrophoresis and completed structured interviews covering household characteristics, treatment practices, and social experiences. Results Among the 65 analyzed cases, most patients were aged 1–20 years, and many families reported low parental education and limited household income. Before Hb electrophoresis, many households could not clearly state the patient’s thalassemia subtype. After the test, Hb E-beta thalassemia accounted for the majority of diagnoses, followed by Beta thalassemia major; while a small number of individuals who had been receiving transfusions were found to have carrier states or iron deficiency anemia. Most patients reported needing transfusions at least once per month, but uptake of iron chelation therapy was low. Social impacts were substantial, marked by stigma, blame, parental guilt, and strained family relationships. Awareness of thalassemia before diagnosis was uncommon and was significantly associated with paternal education. Conclusions In resource-limited settings, a community-based donor and support network can improve access to regular transfusions for thalassemia patients and serve as a scalable complement to formal healthcare services, although comprehensive long-term care requires integration into a national thalassemia program.