诊断难、药物贵、保障缺，65万重症肌无力患者期盼“力启新程”

Core Viewpoint - The article highlights the challenges faced by myasthenia gravis patients in China, emphasizing the need for improved diagnosis, treatment accessibility, and social support systems for this rare disease [1][2][10]. Group 1: Disease Overview - Myasthenia gravis is an autoimmune neuromuscular disorder that affects nerve-muscle transmission, with approximately 650,000 patients in China [1][5]. - The annual incidence rate of myasthenia gravis in China is about 0.68 per 100,000, meaning one person is diagnosed every 14.7 years among 100,000 people [5]. - Misdiagnosis is a significant issue, with a reported misdiagnosis rate of 58.3% among surveyed patients [3][5]. Group 2: Patient Challenges - Patients face numerous challenges, including high treatment costs, lack of insurance coverage for essential medications, and social discrimination [10][11]. - Approximately 40.9% of surveyed patients reported having no income, and 46.3% earn less than 5,000 yuan per month, making it difficult to afford long-term treatment [10]. - 70% of patients are unable to work full-time due to their condition, and 29.8% experienced a relapse in the past six months [6][10]. Group 3: Treatment and Management - Advances in treatment have led to a shift from immunosuppressive therapies to "immune resetting," with potential for clinical remission [7]. - New drug developments, such as CAR-T cell therapy, show promise in improving treatment outcomes [7]. - The article emphasizes the importance of timely and appropriate treatment to achieve clinical improvement [7]. Group 4: Social Support and Advocacy - The establishment of patient organizations, such as the Beijing Aili Myasthenia Gravis Rare Disease Care Center, plays a crucial role in providing support and advocacy for patients [15]. - The article calls for a redefinition of myasthenia gravis to enhance public understanding and reduce stigma [15]. - Continued efforts are needed to improve social support systems and reduce the economic burden on patients and their families [14].