Indonesia and Thalassemia

There's about a 3% probability of being born Indonesian, given that Indonesia's population is 284 million out of the world's 8 billion

Indonesia lies within the "thalassemia belt," a region where this inherited blood disorder is especially prevalent. Thalassemia ranks among the top five most financially demanding diseases covered by the national health insurance program, BPJS. The condition underscores the critical impact of low public awareness. Many young Indonesian couples still marry without getting screened for thalassemia, not realizing how it could affect their future children

Thalassemia is an inherited blood condition that disrupts the body’s ability to produce sufficient hemoglobin and red blood cells. Hemoglobin is a crucial protein in red blood cells that transports oxygen throughout the body. Individuals with thalassemia typically have lower levels of healthy red blood cells and hemoglobin, which can cause anemia, persistent tiredness, and other health issues. Different forms of thalassemia, such as alpha and beta thalassemia, range in intensity. Some people carry the gene without showing symptoms—a state known as the thalassemia trait—while others experience more serious types like thalassemia major, which demand frequent blood transfusions and ongoing medical treatment throughout life.

The management of Thalassemia in Indonesia presents considerable challenges, largely due to limited healthcare resources and the urgent need for early detection and appropriate clinical intervention. Current strategies focus on population-based screening, molecular diagnostic methodologies, and supportive care to reduce disease burden.

The cultural and social dimensions of Thalassemia in Indonesia are substantial, influencing decisions related to marriage, reproduction, and mental well-being, underscoring the urgent need for community-based education and psychosocial support. Individuals living with thalassemia often encounter psychological distress surrounding marital and reproductive choices, shaped by socioeconomic status and adherence to treatment regimens. While many patients express willingness to undergo prenatal diagnostic testing, there is often hesitation to terminate pregnancies affected by the disorder, reflecting deep-rooted cultural and ethical beliefs. Additionally, limited awareness of contraceptive options and the hereditary risks associated with Thalassemia further complicates reproductive planning among those affected.

Children with Thalassemia are more likely to exhibit both internalizing and externalizing behavioral issues, lower cognitive performance, and neurophysiological impairments, highlighting the importance of regular mental health assessments.

Addressing these challenges requires increased awareness and acceptance of carrier screening, particularly among extended family members.