Core Viewpoint - The article highlights the challenges faced by hemophilia patients in accessing necessary medication due to tightening insurance reimbursement policies and the stigma associated with their condition, which has led to increased difficulties in obtaining treatment and maintaining a normal life [8][12][36]. Group 1: Patient Experiences - Patients like Xiang Huan experience significant pain and difficulty in accessing treatment, often spending hours in hospitals to obtain necessary medications [4][10]. - The tightening of reimbursement policies has made it increasingly difficult for patients to receive their required doses of clotting factors, leading to a cycle of emergency treatments rather than preventive care [8][9]. - Many patients report that they are now required to provide extensive documentation and proof of their condition to obtain medication, which was not previously necessary [10][12]. Group 2: Policy Changes and Impacts - Recent changes in insurance policies have restricted the reimbursement of clotting factors to only when patients are actively bleeding, which is a shift from previous practices that allowed for more flexible access [8][9]. - In regions like Zhejiang, stricter regulations have been implemented, resulting in significant savings for insurance funds but at the cost of patient access to necessary treatments [12][16]. - The article notes that the average treatment cost for hemophilia patients is around 276,000 yuan per year, with some patients needing up to 700,000 yuan to achieve international treatment standards [36][37]. Group 3: Stigma and Fraud Concerns - The article discusses how recent fraud cases involving hemophilia patients have led to increased scrutiny and stigma against the entire patient community, affecting their relationships with healthcare providers [17][18]. - Patients feel that they are being unfairly labeled as potential fraudsters, which has changed the dynamics of their interactions with medical professionals [17][20]. - The fear of being accused of fraud has made it more challenging for patients to advocate for their treatment needs, further complicating their healthcare journey [18][20]. Group 4: Economic Pressures - The financial burden of hemophilia treatment is significant, with many patients relying on insurance and charity to cover costs, leading to a precarious situation where any changes in policy can have dire consequences [36][42]. - The article emphasizes that the high costs of treatment and the uneven distribution of insurance coverage across regions exacerbate the difficulties faced by patients, particularly in less economically developed areas [37][38]. - Patients often resort to participating in clinical trials as a means to access necessary medications, highlighting the desperation and lack of options available to them [32][33].