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An insight into Indonesian current thalassaemia care and challenges

Thalassaemia is one of the most prevalent inherited blood disorders in Indonesia, with highly diverse mutations ranging from mild to severe that can be found across the nation. Nevertheless, thalassaemia management in Indonesia is still limited to supportive treatment, such as blood transfusion, iron chelation, complications monitoring, psychosocial support and a comfortable transition from child to adult clinic. However, these managements are still suboptimal in most parts of the nation. Indonesia still has a long way from implementing the optimal curative treatment for thalassaemia. Iron chelators are sometimes not available, especially in rural areas. The cost for optimal dosages of iron chelation also cannot be fully covered by the current national health insurance scheme. However, it still benefits our patients, considering it is the only treatment to decrease iron deposition in organs. With that situation, our patients, both paediatric and adults, have normal cardiac haemosiderosis, moderate‐to‐severe hepatic haemosiderosis and normal to mild pancreatic haemosiderosis. Therefore, the number of deaths, especially those due to heart failure and infection, was significantly reduced. An improvement in thalassaemia supportive treatments is in line with the increase in patients’ life expectancy. Without curative treatment options, the lifelong cost for treatment will extremely burden the national health budget. To date, thalassaemia stands for the 5th most costly disease in Indonesia. Therefore, a screening programme must be realized soon; hence, the treatment cost can be allocated for initiating the transplant unit or improving other important areas.