Assessment of services for diagnosis, management and prevention of thalassaemia in India: The way forward.

BACKGROUND AND

OBJECTIVES

India, home to the largest population of patients with thalassaemia major (TM), has made notable progress in the care through the National Health Mission, National Rare Disease Registry and Thalassaemia Bal Sewa Yojana. This study aimed to assess the infrastructure, support systems and human resources across thalassaemia treatment centres in India to map current service availability and guide policy enhancements for its prevention and comprehensive management.

MATERIALS AND

METHODS

A nationwide survey was conducted between January 2023 and March 2024 among centres managing TM. The survey was disseminated through professional groups, civil societies and non-governmental organizations.

RESULTS

Sixty-eight centres participated (government 26, private 28, charitable 14). About 85% of patients were from low-income families, highlighting the dependence on government support. Transfusion services with leukodepleted red cells were available in 97% of centres, with most maintaining adequate pre-transfusion haemoglobin. Chelation service was accessible in the majority of centres, and 87% provided prenatal diagnostics. Bone marrow transplantation was offered in 60 centres and comprehensive care services in 58 centres. Despite free transfusions and chelation, monthly out-of-pocket costs ranged from Indian rupees (INR) ₹500 to ₹16,000 (US$ 5.92-189.49).

CONCLUSION

Government initiatives have expanded thalassaemia services and reduced financial barriers. Continued efforts to strengthen the national registry and unify policy frameworks will help ensure equitable access across all regions.