Bridging the Gaps in Thalassemia Care in Sri Lanka: Challenges and Way Forward

TL;DR

Thalassemia is a major health issue in Sri Lanka, and this paper outlines challenges in care and suggests ways to improve patient outcomes.

Contribution

The paper proposes a national action plan to enhance thalassemia care in Sri Lanka's public health system.

Findings

Thalassemia major remains a significant health burden despite free treatments in government hospitals.

Patients face indirect costs and limited access to curative treatments like stem cell transplantation.

Lack of caregiver knowledge and social barriers hinder effective disease management.

Abstract

Thalassemia is the most common monogenic disease reported in Sri Lanka and has been a major health issue for decades. Although thalassemia major is preventable, there are about 60–80 births reported annually across the country. In Sri Lanka, the majority of them are managed at government hospitals, and healthcare facilities are provided free of cost, including blood transfusions and iron chelation therapies. Despite free treatments, patients have to bear certain expenses related to travelling, nutritional needs, and other necessities. Hemopoietic stem cell transplantation as a curative option is available only for a limited number of children in the government sector, whereas the cost is prohibitively high in the private sector. As consequence of this chronic disease, patients face persistent obstacles in education, employment, and social life. The lack of knowledge about the disease and its complications among the caregivers is a major challenge in the overall care cascade. This article highlights the measures that may be initiated by the thalassemia treatment centers in the state health sector of Sri Lanka to further improve the quality of life and living standards of patients. We recommend a national action plan to upgrade all treatment centers, enabling them to provide holistic care for thalassemia patients.

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