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60万元保障托起“黏宝宝”新生 “深圳惠民保”破解罕见病用药困局
Shen Zhen Shang Bao· 2025-05-21 06:40
Group 1 - The article highlights the significant impact of the "Shenzhen Huimin Insurance" on families with rare diseases, particularly in providing financial support for treatment [1][2] - Yang Xiaobao, a one-year-old diagnosed with mucopolysaccharidosis, benefited from the insurance, which covers 70% of the treatment costs, alleviating the family's financial burden [2][3] - As of May 2025, "Shenzhen Huimin Insurance" has reimbursed approximately 270,000 yuan for Yang Xiaobao's treatment, showcasing its effectiveness in supporting rare disease patients [2][3] Group 2 - The insurance plan has expanded its coverage to include nine rare diseases and ten high-value self-paid medications for the 2025 fiscal year, increasing the annual reimbursement limit to 600,000 yuan [3] - "Shenzhen Huimin Insurance" has cumulatively compensated over 20 million yuan for self-paid medication costs, benefiting 660 individuals [3] - The enrollment period for the new insurance year is from April 22 to June 30, 2025, with coverage starting from July 1, 2025 [3]
港澳药械通帮她用上港版药但穗岁康不报 百万药费难倒6龄童
Nan Fang Du Shi Bao· 2025-05-19 08:57
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].