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KMID : 1143420220150292067
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Public Health Weekly Report
2022 Volume.15 No. 29 p.2067 ~ p.2078
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National fundholding system for rare disease in the Republic of Korea
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Lee Ji-Won
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Abstract
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Rare diseases are characterized by its rarity and intractabiliy. In the Republic of Korea (ROK), a rare disease is defined to have a prevalence of less than 20,000 individuals. Furthermore, patients experience a substantial amount of medical burden due to the intractable nature of rare diseases. Therefore, the ROK government financially supports low-income rar+e disease patients through a special national fundholding system, called the "Rare Disease Subsidy" project. As of 2021, there were 1,086 rare diseases and 24 severe intractable diseases which were eligible for the project. Applications to be enrolled in the ‘Rare Disease Subsidy“ are available at near-by regional public health care centers or via the internet. Recipients can renew their enrollment every two years after receiving regular investigation into their income and property. In 2021, the rare disease with the largest number of beneficiaries was ‘Moyamoya disease(I67.5)’. ‘Hurler syndrome(E76.2)’ recorded the highest average expense of support per patient. There were 39 diseases for which the average expense of support per patient was more than 5 million won, accounting for 38.9% of the total support budget. As the directing unit of the project, the division of Rare Disease Management has been exerting various efforts to outstretch national support, such as discovering novel rare diseases, constructing the on-line application system, modifying criteria to relax regulations for applicants and so forth, in order to provide better health care for patients with rare diseases.
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KEYWORD
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Rare disease, Intractable disease, Fundholding, Subsidy, Policy, Support
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