DMD全周期保障
Search documents
苏州市人大代表梁萌萌:完善DMD全周期保障,打造罕见病关爱“苏州样板”
Yang Zi Wan Bao Wang· 2026-01-25 11:16
Core Viewpoint - Duchenne Muscular Dystrophy (DMD) is transitioning from being untreatable to treatable due to the approval of innovative therapies, highlighting the importance of accessibility and affordability for patients in Suzhou [1][4] Group 1: Disease Overview - DMD is a severe hereditary neuromuscular disease that requires comprehensive care and support [4] Group 2: Proposed Systematic Approach - A closed-loop system for DMD management is suggested, encompassing screening, diagnosis, treatment, rehabilitation, and insurance [4] - Emphasis on deepening medical insurance reforms to explore separate payment options for rare disease medications and optimize specific policies to prevent patients from needing to be hospitalized for reimbursement [4] Group 3: Accessibility and Support - Recommendations include establishing a "green channel" for urgently needed drugs and incorporating them into universal insurance coverage to reduce out-of-pocket expenses [4] - The importance of prevention and rehabilitation as essential components of the healthcare system is highlighted, with suggestions to initiate newborn screening trials for early detection and intervention [4] Group 4: Collaborative Efforts - Suzhou is positioned to explore a comprehensive support model through multi-departmental collaboration, contributing positively to the "Healthy Suzhou" initiative [4]