Thalassemia Cases Remain High as Early Detection Efforts Intensify

REPUBLIKA.CO.ID, JAKARTA — Thalassemia remains a genetic health challenge in Indonesia. Approximately 2,500 babies are born each year with major thalassemia, requiring lifelong blood transfusions. This situation has spurred efforts to strengthen early detection and screening as the primary preventive measure, amid low public awareness of thalassemia carriers. Sysmex Indonesia, in collaboration with the Ministry of Health, Indonesian Red Cross, BPJS Health, and the Indonesian Thalassemia Parents Association (POPTI), is organising a series of activities under ‘United for Thalassemia’ to mark World Thalassemia Day 2026. Thalassemia is a genetic disorder affecting haemoglobin production in red blood cells, leading to cell damage and varying degrees of anaemia. Without screening, carriers may appear healthy but can pass the condition to their children. Throughout May 2026, activities include a national webinar, blood donation drives, and a digital campaign to raise public awareness. The national webinar on 19 May will serve as a multi-stakeholder forum discussing thalassemia control strategies, access to services under the National Health Insurance (JKN), strengthened early detection, and sustainable blood supply for patients. Directorate General of Disease Control at the Ministry of Health, Andi Saguni, stated that early detection, education, support for thalassemia patients, and multi-stakeholder collaboration are crucial for strengthening thalassemia management in Indonesia. ‘Without screening, thalassemia can persist across generations,’ he said. In Indonesia, thalassemia carrier prevalence is high, with alpha-thalassemia affecting 2.6–11.0% of the population, beta-thalassemia around 3.0–10.0%, and Haemoglobin E up to 1.5–36%. This underscores the urgency of screening among adolescents, prospective couples, and high-risk groups. Alongside education, the activities include blood donation drives to support the needs of major thalassemia patients requiring regular transfusions. Safe and compatible blood availability is a critical factor in the long-term management of the disease. A digital campaign will run from 16 to 30 May 2026 via a social media competition encouraging the public to share inspiring stories about family support, healthcare workers, and the importance of screening and education. Through these initiatives, cross-sector collaboration aims to strengthen public awareness that thalassemia can be prevented through early screening and ongoing education.