ISBT Science Series (2020) 0, 1–8 CONGRESS REVIEW © 2020 International Society of Blood Transfusion DOI: 10.1111/voxs.12544 An insight into Indonesian current thalassaemia care and challenges Pustika Amalia Wahidiyat, 1 Teny Tjitra Sari, 1 Ludi Dhyani Rahmartani, 1 Iswari Setianingsih, 2 Stephen Diah Iskandar, 3 Anastasia Michelle Pratanata, 3 Ivana Yapiy, 3 Mikhael Yosia 1 & Fernando Tricta 4 1 Department of Child Health, Faculty of Medicine, Universitas Indonesia-Cipto Mangunkusumo Hospital, Jakarta, Indonesia 2 The Eijkman Institute for Molecular Biology, Jakarta, Indonesia 3 Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia 4 ApoPharma Inc., Toronto, Ontario, Canada Received: 30 December 2019, revised 30 January 2020, accepted 4 February 2020 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, com- plications 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 can- not 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, thalas- saemia 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. Key words: blood transfusion, complications, epidemiology, Indonesia, iron chela- tion, thalassaemia. Introduction Thalassaemia is a hereditary condition where a mutation in the globin gene gives rise to depletion or complete absence of either a-globin or b-globin chain of haemo- globin, leading to a-thalassaemia and b-thalassaemia, respectively [1,2]. It was first discovered among people living around the Mediterranean Sea by Dr. Cooley and Lee dating back almost a century ago [3]. This geographi- cal pattern is now known as ‘thalassaemia belt’ which spans countries from the Mediterranean ocean to Asia. With the increasing number of migrations, thalassaemia cases are not limited to its initial niche but also expand- ing to America and Australia, contributing to a global health problem that escalates along with its improving survival [2,4]. Worldwide, it is estimated that 320 000 babies are born with haemoglobinopathies each year, and 80% of these Correspondence: Pustika Amalia Wahidiyat, Division of Hematology and Oncology, Department of Child Health, Cipto Mangunkusumo Hospital - Faculty of Medicine Universitas Indonesia, Jalan Pangeran Diponegoro No. 71, Kenari, Senen, Jakarta Pusat 10430. E-mail: pa.wahidiyat@gmail.com 1