Jakarta, IO – Thalassemia is a genetic blood abnormality, one that requires regular blood transfusions and chelation therapy for a lifetime. The pattern of its inheritance follows the outlines of Mendel’s Law (see schematic).
World Thalassemia Day is commemorated every year on 8 May. Around the world, 7%-8% of the population are carriers of b-thal (thalassemia major) genes, with an estimated 300,000-500,000 suffering from the condition every year. 80% of thalassemia cases occur in developing countries, in both lowand medium-income nations. Geographically, Indonesia is located along the thalassemia belt.
According to data from a recent Ministry of Health study, “3%-10% of the population carry the thalassemia major, and 2.6%-11% carry the a-thal or thalassemia minor. We estimate that 2,500 thalassemia major babies are born every year. Treatment for each patient could cost up to IDR 450-500 million a year, making it the fifth-largest BPJS Kesehatan expenditure right after those for catastrophic diseases,” declared Dr. dr. Maxi Rein Rondonuwu, DHSM, MARS, Ministry of Health Director of Disease Prevention and Control, in the “Be Aware, Care for, and Educate about Thalassemia to Strengthen Its Services” media briefing last Friday (5/5/2023). The burden of treating thalassemia by BPJS Kesehatan reaches IDR 545 billion per year.
Other than the issue of cost, other major challenges include failure to comply with a transfusion and medication schedule that maintains a hemoglobin level higher than a critical 9, and the stigma related to the physical deformations generally suffered by thalassemia patients – distended belly, changed skin color, and distorted craniofacial shape – that greatly affect their psychosocial condition.
“Thalassemia is incurable as yet, but it is preventable. Therefore, early detection is crucial, so that everyone knows their disease-carrying statuses and can prevent getting married to fellow disease carriers – or even prevent having children altogether,” dr. Maxi said.