Management of hemophilia in Korea: the past, present, and future

which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. Hemophilia is a bleeding disorder. Although the incidence of hemophilia is very low, the World Foundation of Hemophilia (founded in 1963) has used a multidisciplinary approach to focus its efforts to improve care for patients with the disease worldwide. In Korea, however, the management of hemophilia has been supported by the Korea Hemophilia Foundation (KHF) since 1991. The management of hemophilia in Korea benefited from the development of factor concentrates that were successfully advanced by both global and domestic pharmaceutical companies. In addition, factor concentrates are included in coverage, even in limitation, by the national health insurance. Furthermore, to improve the management of hemophilia in medical institutions around the country, the Hemophilia Working Party (HWP) and KHF published and distributed the manual for the management of hemophilia. Quantitative data has demonstrated that the support provided by these organizations has led to an improvement in the life expectancy of Korean hemophilia patients [1]. For children with severe hemophilia, primary prophy-laxis, in addition to the management of bleeding episodes, is now the recommended treatment strategy [2]. The HWP and KHF have made efforts to convince the government and primary prophylaxis for the patients under 18 years old could be supported by the national health insurance since 2013. However, prophylaxis for adult patients is also important and necessary to improve the quality of life; therefore, we, HWP and KHF, have prepared to show the clinical evidence regarding the benefits of prophylaxis in adult patients. In the management of hemophilia, the development of inhibitors, the alloantibodies to factor concentrates, can cause severe complications. Once a patient develops inhi-bitors, he will experience more frequent and severe bleeding episodes and will need more factor concentrates or bypassing agents (e.g., activated prothrombin complex concentrates and activated recombinant factor VII). Some inhibitors may disappear spontaneously but when the inhibitors persist and show high titer, immune tolerance induction (ITI) is needed to eradicate inhibitors [3]. However, ITI costs a lot, and it is allowed and performed limitedly by the several hemophilia centers in Korea. Furthermore, financial and practical issues make prophylaxis with the bypassing agents very difficult for patients with inhibitors to obtain. Although much progress has been made in regards to the management of hemophilia, there are still several issues to solve. For example, according to the KHF 2012 annual …