事关罕见病！全国人大代表王雪静：可借鉴香港经验，按家庭经济状况设置不同报销比例

Core Insights - The current challenges in rare disease medication include low accessibility, high financial burden, insufficient diagnostic and treatment systems, regional disparities in support, conflicts between payment systems and high drug prices, and inadequate incentives for drug research and market entry [1][3]. Group 1: Current Situation - There is a growing recognition of rare diseases in China, which presents opportunities for improving medication access [3]. - The existing issues significantly impact the guarantee of medication for patients with rare diseases [1]. Group 2: Policy Recommendations - The first recommendation is to innovate the insurance access model for rare diseases by adopting international risk-sharing agreements tailored to China's context, particularly for life-threatening conditions without equivalent treatments [3][4]. - The second recommendation involves optimizing outpatient insurance policies to create a multi-tiered support system that includes outpatient chronic disease coverage, major illness insurance, and supplementary insurance [4]. - The third recommendation is to establish a dedicated fund for rare disease medication, managed at the provincial level with independent accounting and funding from both government and social sources [4].