THE gradual spread of thalassaemia is worrying. Bureau of Statistics data show that 11.4 per cent of the people were carriers of the disease in 2024, which is considered a significantly high rate as the global percentage is 1.5. The percentage was only 4 in 2000. This now comes down to about 20 million thalassaemia carriers. The Bangladesh Thalassaemia Foundation estimates that between 60,000 and 70,000 people, mostly under 35, live with the disease. It says that between 6,000 and 8,000 children are born with thalassaemia each year. What makes it further concerning is that the charity hospital of the foundation treats about 8,440 patients from across the country. The treatment of the disease is inadequate and there are only five specialised thalassaemia centres in the country. Most district hospitals do not have the provision for electrophoresis, the test that detects the disease and other blood disorders. A recent survey, which is yet to be published, as New Age reported on March 8, has found that the carrier rate of thalassaemia has reached 40 per cent in some areas, in the north and in the hill districts, especially among ethnic minority communities.
Public health experts put the situation down to poor awareness, limited screening, weak prevention measures and expensive treatment. The government adopted the National Thalassaemia Prevention Action Plan in 2018 aimed at eliminating the disease by 2028. But the implementation of the plan has stalled and the deadline has now been extended to 2030. The High Court in 2023 asked the authorities to set up an expert committee to draft a policy to curb the spread of thalassaemia, but nothing has since then been heard of it. The government, however, according to a director of the Directorate General of Health Services, has suspended the national action plan after its operational plan was scrapped in 2024. Experts say that not only the government but also international non-governmental organisations and donors have overlooked the serious but preventable health issue of thalassaemia. The minister of state for health and family welfare acknowledges that thalassaemia has never received any priority in the midst of the heavy burden of other diseases such as tuberculosis, malaria, diabetes and hypertension. The vice-chair of the Thalassaemia Foundation says that the government could not set up a functional thalassaemia patient registry or introduce mandatory premarital and prenatal screening. The head of haematology at the National Institute of Laboratory Medicine and Referral Centre says that the absence of a national registry of thalassaemia patients is a major barrier to prevention or control efforts.
It is, therefore, time for the government to act early to attend to the issues of thalassaemia left almost unattended for years.
