Legal Analysis of Rare Disease Patients' Rights to Access Therapy in the BPJS Health System Based on Applicable Regulations
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Abstract
This study discusses the legal analysis of patients' rights to access therapy for rare diseases within the Social Health Insurance Administration Body system based on applicable regulations in Indonesia. Jurisdictionally, the right of patients to obtain therapy for rare diseases is guaranteed by Article 28H paragraph (1) of the 1945 Constitution of the Republic of Indonesia, Law Number 17 of 2023, and Presidential Regulation Number 82 of 2018 in conjunction with Presidential Regulation Number 59 of 2024. The analysis highlights that while these guarantees are normatively regulated in a comprehensive manner, their implementation continues to face various challenges: a vacuum of specific norms, financing limitations, facility inequality, and inter-program coordination issues. Managing rare diseases requires regulatory reform, the strengthening of cross-sectoral integration, and the expansion of the Social Health Insurance Administration Body benefit list. These efforts are essential to accelerate the realization of the right to health for groups that have not yet been optimally accommodated. This research recommends the establishment of specific regulations, the harmonization of epidemiological data, and transparency in the health policy process.
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