Core Viewpoint - The discontinuation of reimbursement for the drug "Vimizim" under the "Sui Suikang" insurance plan has left families of rare disease patients, like the case of a 6-year-old girl named Youyou, facing exorbitant out-of-pocket expenses for necessary treatments, raising concerns about the adequacy of current healthcare policies for rare diseases [2][3][4]. Group 1: Patient Experience - Youyou, diagnosed with Mucopolysaccharidosis Type IV, requires lifelong treatment with the drug Vimizim, which costs over 2 million yuan annually [2][3]. - The family previously relied on the "Sui Suikang" insurance plan, which covered most of the drug costs until March 2023, when reimbursement was halted [3][4]. - The monthly cost for Youyou's treatment has escalated to over 100,000 yuan, leading to financial strain on the family [3][6]. Group 2: Insurance Policy and Regulations - The Guangzhou Medical Insurance Bureau stated that Vimizim is not covered under "Sui Suikang" because it is no longer approved for sale in mainland China, as its registration expired in May 2024 [4][7]. - The new "Sui Xin Bao" insurance plan claims to cover drugs introduced through the "Hong Kong and Macau Drug and Device Access" policy, but excludes pre-existing conditions, leaving patients like Youyou without coverage [5][7]. - The Guangzhou Medical Insurance Bureau acknowledged the family's appeal regarding the inclusion of Vimizim in "Sui Suikang" but indicated that coverage decisions are based on annual operational assessments [8]. Group 3: Broader Implications - The situation highlights disparities in insurance coverage for rare diseases across different cities, with some cities like Shenzhen including Vimizim in their insurance plans while Guangzhou does not [4][7]. - The family’s struggle reflects a larger issue regarding the adequacy of healthcare support for patients with chronic and rare conditions, questioning the effectiveness of current policies in providing necessary treatment options [5][6].