Thalassemia is an inherited haemoglobin disorder, which has no cure, but it is preventable. Once found to be localized in certain parts of the world, thalassemia has become a global public health concern because of increasing international migration [1, 2]. An estimated 1–5% of the world population are carriers of thalassaemia [2]. Nearly 90% of these births occur in developing countries [2]. In South Asia, particularly in India, Bangladesh, and Pakistan, thalassaemia has become a silent epidemic with an estimated 45–70 million thalassaemia carriers [3]. In Bangladesh, thalassaemia carriers' prevalence among the general population is estimated to be around 6–12%, which translates into 10–19 million [4, 5]. An estimated 60,000–70,000 patients have been suffering from severe forms of thalassaemia (β-thalassaemia major and HbE beta) in the country [3]. Despite a higher prevalence of thalassemia carriers, people are mostly unfamiliar with this disease in Bangladesh [6].
The United Nations has declared that “indigenous peoples are recognized as being among the world’s most vulnerable, disadvantaged and marginalized peoples” [7]. Out of approximately 390 million indigenous people globally, Bangladesh is the habitat of around 3 million people of these communities consisting of 1.8% of the total population (over 160 million). The indigenous or tribal people of Bangladesh mostly live in Chittagong hill tracts (CHT, 41%). Among them, Chakma, Marma, and Tripura comprise the largest ethnic minority group consisting of 90% of the indigenous population living in CHT [8, 9]. Indigenous communities are underprivileged in terms of education and have less access to healthcare services, mainly because their habitats are located in the country's peripheral remote parts [10]. Nearly 82% of the children aged 5–19 years of age are enrolled in primary or secondary schools [11]. However, around two-thirds of them (65%) fail to complete primary schooling, and another 19% of them are dropped after completion of primary education [11]. The main barriers to keep the tribal students in school are economic, social, remote access from the mainland and armed conflicts among different ethnic groups [11, 12].
Studies have shown that thalassemia carriers (β-thalassaemia trait and HbE) are highly prevalent (39–47%) among indigenous populations [4]. However, the frequency of different thalassaemia types may vary from one region to another. About 70% of people from Asia, notably the northern regions of Thailand and Cambodia, carry HbE variant. In contrast, the frequency of alpha thalassaemia in the Mediterranean regions, the Middle East to the Indian subcontinent, and the East range 10–25% [13]. Many recent reports have described the higher prevalence of alpha and HbE than β-thalassaemia among tribes/indigenous communities from China, Vietnam, Malaysia, and Thailand [14–19]. Given the vulnerable socio-economic conditions, inadequate access to healthcare, poor health awareness, and intra-tribal marriage practice, the higher prevalence of genetic disorders, including thalassemia is expected to accumulate defective genes within the population. Therefore, if this trend is allowed to continue, the tribal population's size will keep reducing gradually, which can further endanger this ethnic minority group.
In addition to the long-term consequences, there is another aspect of health equity for this minority group. Since indigenous people have less access to education, individuals who get an opportunity for higher studies at the university level, are expected to lead their communities. Therefore, understanding the perspective of thalassemia among indigenous university students could be a critical step towards developing a tailored made effective preventive strategy for their communities. In this study, we aimed to assess the level of knowledge and attitudes towards thalassaemia among indigenous university students and determine their thalassemia carrier status.