罕見疾病藥物納保審查機制與改革方向【月旦時論】 試閱
Challenges and Proposed Reforms for NHI Coverage of Rare Diseases and Orphan Drugs in Taiwan
及早診斷及治療罕見疾病可以避免嚴重失能的後果，並減少社會成本及醫療支出。然而，由於健保收載罕見疾病用藥的流程緩慢且充滿挑戰，成為病人面臨的重大困境。透過介紹罕藥健保收載審查機制，以及呈現兩個案例反映現有程序的問題，本文最後提出七項改革建議供中央健康保險署參考。
Early diagnosis and early treatment of rare diseases can prevent severe disabilities and reduce social and medical costs. However, patients face a significant hardship due to the slow and challenging process for obtaining National Health Insurance (NHI) coverage for orphan drugs, as it delays access to lifesaving medications and creates financial burdens. This article outlines the process for listing in the NHI Pharmaceutical Benefits and presents two cases that illustrate the issues with the existing procedures. It concludes by proposing seven reform suggestions for the National Health Insurance Administration to consider.
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