约百种罕见病用药纳入医保

Core Insights - The rare disease directory in China has been expanded to include 207 diseases, with a national rare disease diagnosis and treatment collaboration network covering 31 provinces and approximately 100 rare disease medications included in the national medical insurance drug list [1][2] Group 1: Policy and System Developments - The Chinese government has introduced two batches of rare disease directories, establishing a foundation for standardized diagnosis and treatment [1] - The number of hospitals in the national rare disease diagnosis and treatment collaboration network has increased from 324 in 2019 to 419 currently [1] - The national rare disease multi-disciplinary consultation platform led by Peking Union Medical College Hospital has significantly improved the level of rare disease diagnosis and treatment [1] Group 2: Medical Insurance and Funding - In 2024, the medical insurance fund will allocate 8.6 billion for rare disease medications, accounting for 7.7% of the total payment for medications during the agreement period [1] - The medical insurance bureau is actively promoting the inclusion of drugs in the medical insurance directory and the establishment of a "dual-channel" drug supply mechanism to enhance drug accessibility [1][2] Group 3: Research and Data Collection - The National Rare Disease Registration System (NRDRS) has established 253 research cohorts covering 216 diseases, with over 90,000 registered cases and 105 clinical studies conducted [2] - The national rare disease reporting system has covered all 31 provincial administrative regions and 236 prefecture-level administrative regions, with a total case count reaching 1.64 million [2] Group 4: Challenges and Future Directions - There are still imbalances in the distribution of diagnostic and treatment resources, particularly in remote areas and grassroots medical institutions [2] - Future efforts will focus on enhancing the diagnostic and treatment system through telemedicine, multi-disciplinary collaboration, and leveraging emerging technologies like big data and artificial intelligence for precise diagnosis and drug development [2]