In 2021, there were approximately nine million cases of Thalassemia among children worldwide. The condition is a major global health burden, with about 300,000 to 400,000 children born annually with severe hemoglobin disorders, including Thalassemia. The majority of these affected children are born in low- and middle-income countries including Bangladesh.
Pediatric Thalassemia in Bangladesh is one of the rare diseases of children among others. It claims thousands of lives of children annually.
Status of Thalassemia in Bangladesh: Thalassemia is a major, growing public health concern in Bangladesh, with approximately 11.4 -12 percent of the population 17-22 million carrying the thalassemia gene. Roughly 6,000 to 13,000 children are born with thalassemia major annually, with over 60,000 patients currently suffering from the disease, requiring regular, costly, and often inaccessible blood transfusions.
Studies estimate that 6-12 percent of the population are carriers, with some studies showing rates as high as 10.9-13.3 percent. It is the most common hereditary blood disorder in the country, and it is considered a significant, growing health issue. Studies have shown higher rates of beta-thalassemia traits in specific areas, such as the Barisal division 8.1 percent, followed by Rajshahi 5.5 percent and Sylhet 5.2 percent.
Children are often diagnosed around 18 months of age with cases are common among school-aged children, average age around 16. Due to a lack of premarital screening and awareness, an estimated 6,000 to 13,000 children are born with the Thalassemia annually.
Regular, life-long blood transfusions and iron chelation therapy is crucial but often poorly managed due to high cost. Families often bear 74 percent of treatment costs out-of-pocket, leading to financial distress.Over 80 percent of parents struggle to find regular blood donors, and many receive no support from organized blood banks.
Researches show that children face limitations in daily activities and schooling, with many experiencing social stigma. Despite 7,000 children being born with thalassemia annually in Bangladesh, the country lacks a national prevention program.
While most parents are aware of the disease, fewer than 10 percent of mothers received prenatal diagnosis in previous pregnancies. And 40 percent of parents face social stigma. Health professionals strongly recommend mandatory premarital screening, awareness campaigns, and increasing access to prenatal diagnosis.
Rare diseases and high-mortality conditions in Bangladesh claim the lives of thousands of children annually due to poverty, limited diagnostic facilities, lack of specialized treatment.
In Bangladesh, most of the children with Thalassemia were deprived of regular blood transfusion and medical follow-up at the district level during the COVID-19 restrictions. Over 80 percentchildren with Thalassemia had no access to healthcare services at all.
In Bangladesh, more than 70 percent of people live in rural areas. And Rural populations face significant, widespread disparities in healthcare access compared to urban counterparts. As a result, over 56 percent of global rural residents lacking essential health services. Consequently, rural residents experience poorer health outcomes, including higher rates of chronic illness and non-communicable diseases (NCDs) such as diabetes, heart disease, and increased mortality.
The COVID-19 pandemic has exacerbated this situation further due to an acute shortage of blood supply and inadequate medical care. So considering the vulnerability, Dr. Shamima Sultana of Dhaka Medical College Hospital said, "Emergency response with appropriate mitigation measures must be a priority for ensuring adequate blood supply and proper treatment during any pandemic both in rural and urban areas."
Every year Thalassemia Day is observed globally on May 08 through World Health Organization (WHO).The global stakeholders come together to help create a world where people with Thalassemia are empowered, heard and prioritized. As the United Nations Sustainable Development Goals (SDGs) aim: No one is left behind.
It must be ensured that the challenges, needs, and rights of those living with Thalassemia are not only acknowledged but placed at the heart of healthcare policies and practices.
The writer is an environmentalist
