Thalassemia continues to pose a serious public health challenge in India, with thousands of children dependent on lifelong blood transfusions and careful monitoring. While advances in screening and treatment have improved survival and quality of life, gaps remain in awareness, prevention and access to newer therapies. Hemant Kumar Rout discusses the evolving landscape of thalassemia management with Prof Rabindra Kumar Jena, director of clinical haematology, BMT and cellular therapy at Utkal Hospital, Bhubaneswar. Edited excerpts:
Blood disorders are often underdiagnosed in India. What are the most common haematological conditions you see in the country?
It’s true that the blood disorders are under-diagnosed across the country despite its incidence being highest among all the disciplines. About 60% of the Indian population suffer from anaemia as per the latest National Family Health Survey (NFHS-V). Genetic blood diseases like sickle cell disease and thalassemia constitute about 3-8% and 3-4% of the Indian population respectively as per the latest data generated by National Sickle Cell Anaemia Elimination Programme (NSAEP). Platelet disorders including ITP, coagulation disorders like Haemophilia, haematological cancer like leukaemia, myeloma and lymphoma etc are also seen commonly in the country.
How serious is the burden of thalassemia?
About 10,000-15,000 infants are born with thalassemia major annually who require regular blood transfusion and other medication for survival. On an average ₹2 Lakh is spent per annum for optimal management of each thalassemia child. In addition, the loss of working days by parents adds on leading to tremendous socio economic burden.
Can thalassemia be prevented?
Yes, it can be prevented by preventing the birth of a major child or by curing the existing gene abnormalities. Families can go for detection of carriers and counselling to avoid marriage among carriers. One carrier can marry a normal counterpart, but marriage between two carriers should be avoided. Identification of abnormalities of the foetus at 14-16 weeks of pregnancy through genetic study is important. If thalassemia is diagnosed, allogeneic BMT should be carried preferably below 10 years of age to correct the genetic abnormalities.
How effective are antenatal screening and genetic counselling in preventing thalassemia major births?
Very much effective and probably the only practical preventive measure available at present. It should be available free of cost in every district headquarters hospital so that a pregnant woman can avail this facility at her nearby hospital without travelling a long distance.