罕见病商保面临三大难题，谁来给千万患者发“入场券”

Core Viewpoint - The probability of rare disease patients receiving compensation from commercial insurance is extremely low, akin to the likelihood of an average person contracting a rare disease. The demand for better coverage from commercial insurance is highlighted, especially as basic medical insurance has started to cover some high-cost medications for rare diseases [2][3]. Summary by Sections Rare Disease Patient Insurance Challenges - Rare disease patients face significant challenges in obtaining commercial insurance coverage due to strict underwriting criteria and the exclusion of pre-existing conditions. Even government-backed health insurance options have seen drastic cuts in coverage for pre-existing conditions [2][3][4]. - The National Healthcare Security Administration reported that there are approximately 100 rare disease medications included in the national insurance directory, covering 42 types of rare diseases, with a projected payment of 8.6 billion yuan for these medications in 2024, accounting for 7.7% of total payments during the agreement period [2]. Commercial Insurance Market Dynamics - Approximately half of the 40 innovative drugs submitted for commercial insurance in the second half of the year are for rare diseases. However, insurance companies remain cautious about covering rare disease patients due to the inherent risks associated with genetic and hereditary conditions [3][4]. - The commercial insurance market traditionally excludes congenital diseases and genetic disorders from coverage, which poses a significant barrier for rare disease patients. The risk associated with known hereditary conditions makes it difficult for insurers to price policies effectively [4][5]. Risk Assessment and Pricing Issues - The lack of precise research on the mechanisms of specific rare diseases complicates risk assessment for insurers, leading to higher premiums and conservative coverage terms. Insurers are concerned about the potential for adverse selection if they lower underwriting standards for rare disease patients [6][7]. - The commercial health insurance market is likened to a reservoir that must balance inflow (new premiums) and outflow (claims). The small patient base for rare diseases makes it less attractive for insurers to develop tailored products, as the risk and treatment costs vary significantly across different rare diseases [5][6]. Coverage Gaps and Patient Experiences - While some commercial insurance products do cover specific hereditary diseases, the majority still exclude them, leaving patients with limited options. The coverage for rare diseases is often inadequate, with high deductibles and low reimbursement rates for outpatient treatments [7][10]. - The integration of rare disease medications into commercial insurance products is becoming a selling point, but the actual coverage and reimbursement rates remain unclear. Many patients report significant out-of-pocket expenses despite having insurance [10][11]. Regulatory and Market Developments - The National Healthcare Security Administration's dual-directory negotiations for innovative drugs have led to a higher proportion of rare disease medications being submitted for commercial insurance. However, insurers may lack the motivation to include high-cost rare disease treatments due to the associated risks [10][11]. - The lack of a clear directory for rare disease medications complicates the process for hospitals and insurers, leading to delays and rejections in coverage for necessary treatments [12].