Dealing with thalassemia

The recently published National Thalassemia Survey 2024 revealed an alarming development on the health front: 11.4 per cent of the country's population are thalassemia carriers. Based on this rate, approximately 19.38 million of Bangladesh's 170 million people are thalassemia carriers. This makes the prevalence of thalassemia carriers in Bangladesh relatively higher compared to many other countries or regions worldwide. This is particularly critical given that carriers of thalassemia, though they may exhibit only mild symptoms, can pass the disorder to their offspring if both parents carry the defective gene. In a country where awareness and genetic testing are limited, this poses a substantial risk to future generations. According to the Bangladesh Thalassemia Foundation, every year approximately seven thousand thalassemic children are born in the country. This high prevalence of thalassemia is primarily attributed to consanguineous marriages and marriages between two thalassemia carriers.
Thalassemia, an autosomal recessive disorder, hampers haemoglobin production, impairing red blood cells' ability to transport oxygen efficiently. While there have been medical advancements in treating the disease, thalassemia remains a leading cause of morbidity and mortality. It remains a significant public health threat mainly because of a lack of awareness and inadequate screening programmes. Addressing thalassemia requires a comprehensive and multi-pronged approach. First and foremost, there must be a nationwide campaign to educate the public about the nature of the disorder, how it is transmitted, and the importance of genetic screening. Public awareness is essential in dispelling myths and misconceptions about the disease and its carriers.
Public health experts suggest making genetic testing, particularly for young adults and couples planning to start families, more accessible and affordable to prevent further spread of thalassemia. One effective measure could be the implementation of mandatory blood testing before marriage. The government could enact legislation requiring that prospective couples undergo testing for thalassemia status. Such a measure would ensure that individuals are fully informed about their carrier status and can make informed decisions on family planning. Thalassemia carriers possess one of the faulty genes that cause thalassemia, but they do not develop the disease themselves. The risk arises when two carriers marry, as their offspring may inherit both faulty genes and develop thalassemia major, a severe and life-threatening condition. Preventing marriages between two thalassemia carriers is an effective way to reduce the spread of thalassemia.
Furthermore, at present, only a limited number of non-profit organisations such as the Bangladesh Thalassemia Foundation provide care for thalassemia patients. These foundations rely on limited government donations, which are far too insufficient to meet the growing demand for treatment. The government would do well to take full responsibility for these organisations, ensuring they are adequately funded and can offer comprehensive care to patients. Moreover, treatment centres must be decentralised. Currently, thalassemia treatment is concentrated in Dhaka, creating a significant barrier for patients living in rural or remote areas. The government should prioritise establishing treatment facilities in every district, ensuring equal access to care for all citizens, regardless of their location and financial condition. This multi-pronged approach - combining public awareness, accessible genetic testing, decentralised treatment, and a well-trained healthcare workforce - can help combat thalassemia and improve the quality of life for those affected by this genetic disorder.