中新网上海4月17日电（记者 陈静）在第N个世界血友病日之际，中国血友病的诊疗策略迎来重大转变。中国医药教育协会止血与血栓分会副主任委员、中国罕见病联盟血友病学组主任委员杨仁池教授于17日在上海表示，中国正在逐步从传统的血友病按需治疗模式转向更先进、更有效的个体化预防治疗。
血友病，一种罕见的遗传性出血性疾病，对患者的生活质量影响深远。杨仁池教授指出，过去，中国血友病患者的治疗主要依赖于出血事件发生后的紧急止血处理，即“按需治疗”。然而，这种治疗方式往往无法有效防止关节损伤和生活质量的下降。
随着医学科技的进步和对血友病理解的深入，中国医疗界开始倡导个体化预防治疗策略。杨仁池教授强调，这种新策略旨在通过定期预防性输注凝血因子，减少出血事件，保护患者关节，提高其生活质量和预期寿命。
他表示，中国在血友病治疗领域的这一转变，不仅体现了医疗技术的发展，也是对患者需求和生活质量关注的提升。他还呼吁，社会应进一步加强血友病的公众教育，提高疾病的早期识别和诊断率，以便更早地实施个体化预防治疗。
中国罕见病联盟等组织在提升血友病诊疗水平、推动新药研发和医保覆盖等方面的工作，也为这一转变提供了有力支持。随着预防性治疗的普及，中国血友病患者有望迎来更加健康、无痛的未来。
英语如下：
News Title: “China’s Hemophilia Treatment Enters New Era: From On-Demand to Personalized Prevention”
Keywords: Hemophilia treatment, personalized prevention, paradigm shift
News Content:
SHANGHAI, China, April 17 (Xinhua) – On the Nth World Hemophilia Day, China’s approach to treating hemophilia has undergone a significant transformation. Professor Yang Rencui, Deputy Director of the Hemostasis and Thrombosis Branch of the China Pharmaceutical Education Association and Chairman of the Hemophilia Working Group of the China Rare Disease Alliance, announced in Shanghai on the 17th that the country is transitioning from traditional on-demand treatment to more advanced and effective personalized preventive therapy.
Hemophilia, a rare genetic bleeding disorder, significantly impacts patients’ quality of life. Professor Yang pointed out that previously, hemophilia patients in China mainly relied on emergency hemostasis management after bleeding incidents, known as “on-demand treatment.” However, this approach often fails to prevent joint damage and deterioration of quality of life.
With advancements in medical science and a deeper understanding of hemophilia, the Chinese medical community has begun advocating for personalized preventive strategies. Yang emphasized that this new approach aims to reduce bleeding episodes through regular preventive infusions of clotting factors, thereby protecting patients’ joints, enhancing their quality of life, and increasing their life expectancy.
He stated that this shift in hemophilia treatment in China not only demonstrates the development of medical technology but also reflects an increased focus on patients’ needs and quality of life. Yang also called for increased public education about hemophilia to improve early recognition and diagnosis rates, enabling earlier implementation of personalized preventive therapy.
Organizations like the China Rare Disease Alliance, through their efforts in improving hemophilia treatment standards, promoting new drug development, and expanding medical insurance coverage, have provided strong support for this change. As preventive treatment becomes more widespread, Chinese hemophilia patients are poised to look forward to a healthier and pain-free future.
【来源】http://www.chinanews.com/life/2024/04-17/10200803.shtml
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