Presentation (CTI)

OBJECTIVES: As part of China’s multi‑level healthcare security system, Urban Customized Commercial Medical Insurance (UCCMI) provides supplementary coverage for orphan drugs. This study aims to evaluate the characteristics and accessibility of orphan drugs involved in UCCMIs.
METHODS: Data were obtained from the PHARMCUBE database. Orphan drugs were defined as medicines for treating rare diseases identified in China’s National Rare Disease Catalog, and those covered by UCCMI during 2020-2024 were included in the analysis. Descriptive statistical analysis was conducted to summarize key characteristics. Specialty drug coverages set the deductible, reimbursement rate, and cap. Most common orphan drugs (≥5 inclusions in 2024 UCCMIs) were included in analyses of accessibility and affordability. Affordability ratios were defined as the out-of-pocket cost per patient divided by the 2024 urban household non‑food consumption expenditure. Availability ratios were defined as the proportion of orphan drugs included in regional UCCMIs.
RESULTS: 124 orphan drugs were analyzed, corresponding to 115 UCCMI products and 208 Specialty drug coverages. 51.61% (64 drugs) were listed in the National Reimbursement Drug List (NRDL). Hemophilia was the most frequent indication (10 drugs). The most typical Specialty drug coverage (127, 61.06%) directly set the deductible and cap (¥0 and ¥1,000,000), with reimbursement rates differentiated for pre-existing (30.00%) and non-pre-existing (80.00%). Among 22 NRDL-listed orphan drugs most frequently covered by UCCMI, the affordable drugs rose from 7 to 20 (non-pre-existing) and to 12 (pre‑existing) after being reimbursed by both basic medical insurance and UCCMI. Among the remaining 28 drugs, which were not listed in NRDL, only 3 (non-pre-existing) and 2 (pre-existing) were affordable when reimbursed solely through UCCMI. UCCMI coverage ranged from 95.97% of orphan drugs in the eastern region to 62.90% in the northeastern region.
CONCLUSIONS: UCCMI has enhanced the accessibility of orphan drugs in China through diversified Specialty drug coverage; however, coverage remains insufficient for non-reimbursed drugs, and availability is uneven across regions.