韓國罕見疾病醫療照護政策初探

An Exploratory Review of Korean Healthcare Policies for Patients with Rare Diseases

罕見疾病患者為相對弱勢之族群，需要政府投注更多的資源與心力給予幫助，故其醫療照護政策更需要用心規劃，參考他國制度可謂一條捷徑。本研究將回顧國內外中、韓文相關文獻，整理出韓國罕見疾病醫療照護政策之初步架構，探討韓國相關政策之利弊。研究結果顯示韓國目前共計有134種罕見疾病病群，總計889種罕見疾病，而指定之孤兒藥則有148種。韓國的健康保險制度將罕見疾病納入範疇，並依照經濟狀況不同分為三個等級給予給付，此外健康保險也給付罕病藥物，惟並非所有罕病藥物皆可獲得給付，如須使用非給付罕病藥物的病患將背負沉重經濟負擔。除了健康保險以外，另有罕見/難治性疾病患者醫療費支援計畫補助其他健康保險未盡部份，如輔具、呼吸輔助器、醫療費的個人負擔部份及特殊營養食品費用等，此計劃以補助收入較低之罕病患者為主，但有少部分補助項目則不論其財產所得狀況一律補助。韓國的罕見疾病醫療照護政策或許不如我國的政策優厚，但優點為醫療衛生與社會福利結合，故涵蓋範圍頗為完整，此外以經濟收入較差的罕病患者為主要補助對象的政策主軸，不至於造成健康保險或補助計畫財政上的過重負擔。

Patients with rare diseases are one of the vulnerable populations in the society and should pay much attention on their health care needs and services. The present paper aimed to describe and analyze the Korean healthcare policy and services toward patients with rare diseases based on current literature reviews. Results showed that there were 134 groups of rare diseases and 889 types of diseases totally, and 148 orphan drugs in Korea. Patients with rare diseases are included in National Health Insurance Scheme which divides into three different payment systems and copayment is also initiated in part of the orphan drug fees. The health insurance payment deducible system also considers the family income status and the patients will receive different coverage and supplementary assistance in this coverage. General comparison between Taiwan and Korean healthcare for patients with rare diseases, we found our country's healthcare services and insurance assistance are much better than Korea, however, the integration of healthcare and social welfare in Korea for patients with rare diseases can be our reference to sustain the economic capacity for this vulnerable population.