新华鲜报 | 约100种罕见病用药进医保！生命与希望在集结

Core Insights - Approximately 100 rare disease medications have been included in the national medical insurance drug list, reflecting a significant advancement in the treatment and support for rare disease patients in China [1][2][3] Group 1: Medical Insurance and Coverage - The national medical insurance drug list now covers medications for 42 types of rare diseases, with a projected payment of 8.6 billion yuan for rare disease medications in 2024, accounting for 7.7% of total drug payments during the agreement period [1] - The establishment of a multi-layered insurance system, including basic medical insurance, critical illness insurance, and medical assistance, is underway to enhance support for rare disease patients [1][4] Group 2: Research and Innovation - The development of a comprehensive support network for rare diseases includes advancements in drug research, rapid review processes, and the establishment of a dual-channel supply mechanism for medications [2] - Significant breakthroughs in rare disease treatments have been achieved, with examples of previously untreatable conditions now having available medications that are also covered by insurance [2][3] Group 3: Global Contribution and Collaboration - China is emerging as a key player in the global discourse on rare diseases, having established a reporting system covering 1.15 billion people and registering 1.64 million cases [3] - The country has led initiatives at the World Health Assembly regarding rare diseases, showcasing its commitment to global health governance [3] Group 4: Social Support and Community Engagement - Various government departments and social organizations are collaborating to enhance care for rare disease patients, with initiatives aimed at improving accessibility and support [4] - Hospitals are implementing patient-friendly measures, such as placing rare disease clinics on the ground floor and ensuring lifelong follow-up care for patients [4]