Awareness and Pre-marital Screening is the key to Thalassemia prevention in Bangladesh

World Thalassemia Day is observed every year on May 8 to raise awareness about thalassemia, a hereditary blood disorder that continues to pose a significant public health challenge worldwide. In Bangladesh, the day holds particular importance due to the high prevalence of thalassemia carriers and the growing burden of the disease on families and the healthcare system.

This occasion reminds us that thalassemia is not only a public health issue but also a social concern that requires preventive strategies, especially premarital screening. Thalassemia is a genetic disorder characterised by abnormal hemoglobin production, leading to anemia and other serious health complications. It is inherited in an autosomal recessive pattern, meaning that a child can develop severe thalassemia only if both parents are carriers. In such cases, there is a 25% chance that their child will be affected by the disease. This simple genetic fact highlights why prevention, rather than treatment, should be the primary focus in countries like Bangladesh.

Bangladesh lies within the "thalassemia belt," where the disease is highly prevalent. For a long time, studies suggest that approximately 6–12% of the population are carriers of thalassemia or other hemoglobin disorders. More recent data derived from a national survey indicate that the carrier rate is actually around 11.4%, which translates into approximately 20 million of carriers nationwide. Every year, thousands of children are born with thalassemia, many of whom require lifelong blood transfusions and expensive treatments.

The burden of thalassemia is not limited to physical suffering. It has profound emotional, social, and economic consequences. Families often struggle with the cost of regular blood transfusions, iron chelation therapy, and hospital visits. In a developing country like Bangladesh, where healthcare resources are already limited, managing thalassemia patients becomes a significant challenge. This makes prevention not only a health priority but also an economic necessity. One of the most effective strategies for preventing thalassemia is premarital screening. Premarital screening involves testing individuals before marriage to determine whether they are carriers of the thalassemia gene. If both partners are found to be carriers, they can make informed decisions about marriage and family planning, often with the guidance of genetic counseling.

The importance of premarital screening lies in its ability to identify carriers before they have affected children. Since carriers are usually healthy and unaware of their status, screening is the only reliable way to detect them. By preventing marriages between two carriers or by providing counseling, the birth of children with severe thalassemia can be significantly reduced. Experts emphasise that thalassemia is theoretically 100% preventable through effective screening and awareness programs. Unfortunately, no such programs exist in our healthcare system although it has been given priority in the policy formulated in 2019. Therefore, enactment of this policy is paramount. Several countries, including Saudi Arabia and Iran, have successfully implemented mandatory premarital screening programs. These initiatives have led to a substantial reduction in the number of new thalassemia cases.

Bangladesh can learn from these models and adapt them according to its socio-cultural context. Undoubtedly, success of a thalassemia program depends on awareness of mass population and implementation of the objectives lies on awareness. Otherwise, screening only may not be effective in reducing the disease burden. Despite its proven effectiveness, premarital screening is not yet widely practiced in Bangladesh. One of the major barriers is the lack of awareness among the general population. Studies show that a significant portion of people, including educated youth going to college and universities, have limited knowledge about thalassemia and the importance of screening. Social stigma and misconceptions also discourage people from getting tested or disclosing their carrier status. We have discovered all of those challenges from our work led by BioTED involving university students across the country.

Cultural practices, such as consanguineous (cousin) marriages, further increase the risk of thalassemia. In such marriages, the likelihood of both partners being carriers is higher, which increases the chances of affected offspring. Addressing these practices requires not only medical intervention but also community education and social awareness. Another challenge is the lack of a nationwide screening program and accessible diagnostic facilities. Many people, especially in rural areas, do not have access to affordable screening services. Without government support and policy implementation, it is difficult to make premarital screening a routine practice.

To effectively prevent thalassemia in Bangladesh, a comprehensive approach is needed. First, public awareness campaigns should be strengthened through schools, colleges, media, and community organizations. Educating young people about genetic diseases and the importance of screening can bring long-term change. Second, the government should consider implementing a national premarital screening program. While making it mandatory may face resistance initially, voluntary screening with strong encouragement and incentives can be a practical starting point. Integrating screening into existing healthcare services, such as routine medical check-ups or marriage registration processes, can also increase participation. Third, genetic counseling services must be expanded. Screening alone is not enough; individuals need proper guidance to understand their results and make informed decisions. Counseling can help reduce fear, stigma, and misconceptions associated with carrier status. Fourth, collaboration with religious and community leaders is essential. In fact, the total educational system of the country gives us a unique opportunity to bring a huge proportion of young people under the coverage of thalassemia prevention program. Therefore, awareness and prevention can be initiated from the educational institutions.  In Bangladesh, where social and cultural values play a significant role in decision-making, involving respected figures can help promote acceptance of premarital screening.

This is year, the theme of world thalassemia day is "Hidden no more: Finding the Undiagnosed. Support the Unseen". The theme mainly focuses on people living with undiagnosed thalassemia and improving support for those who are already diagnosed but face challenges in care. Undoubtedly, we must work for thalassemia patient care and state must ensure them a better quality of life so that they can be integrated in the society as a normal human being. Although it hardly happens and thalassemia patients suffer a lot. As a result, they cannot progress in their life. For a country like Bangladesh with a limited resource and spending the healthcare system offers a very little or nothing for thalassemia patients. This challenge must be realized in order to save our next generation from thalassemia and prevention is the only one option we can offer to next generations. Thalassemia treatment is costly (200-300 $/month), blood transfusion is often demanding and the only cure available is bone marrow transplant which is beyond the affordability of most of the patients in Bangladesh. Considering all of those challenges, prevention is less costly but we need concerted effort and a social movement to enact prevention program. Obviously, the theme of this year's thalassemia must be implemented for the thalassemia carriers as well by identifying the unknown carriers, removing the taboo and spreading awareness among the population to successfully establish a prevention program.

On this World Thalassemia Day, it is crucial to remember that every child deserves a healthy life. Thalassemia, though severe, is largely preventable. By promoting premarital screening, raising awareness, and implementing effective policies, Bangladesh can significantly reduce the burden of this disease.  In conclusion, thalassemia prevention is not just a medical responsibility but a collective social duty. Premarital screening stands as a powerful tool in breaking the cycle of transmission and ensuring a healthier future generation. Let this day serve as a call to action for individuals, families, healthcare professionals, and policymakers to work together towards a thalassemia-free Bangladesh.

Dr Muhammad Sougatul Islam is the Executive Director, BioTED

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