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  广州4月21日电(记者蔡敏婕)中山大学附属第六医院移植外科/小肠外科主任柯嘉21日为一位短肠综合征患者开出了替度格鲁肽的华南成人首方,短肠综合征患者有望告别“输液袋”。

  “本以为以后难以正常饮食且离不开输液袋维持,没想到有希望。”来自广东茂名的崔伯今年81岁,此前因肠系膜扭转与肠坏死被切除大范围肠管,术后小肠剩下约55厘米,仅为正常人小肠长度的十分之一,因剩余肠道无法吸收身体所需的营养量,他被诊断为短肠综合征,同时因为前次手术的小肠-盲肠吻合口狭窄而叠加了肠梗阻。

  2024年9月转入中山六院后,经过与小肠内镜科的多学科尝试后,柯嘉团队为其切除狭窄的吻合口并再次行小肠-盲肠吻合,小肠长度基本无改变。术后患者恢复经口进食,并经过营养科、消化内科共同努力改善饮食方案后,生活质量获得改善。然而因为肠道长度过短,崔伯经常出现稀便或水样便,且便次频繁,并伴有体重减轻、乏力等症状,只有依靠肠外营养输液方可缓解。

  据悉,我国成人短肠综合征(SBS)患病率约为0.73/1,000,000,且呈逐年上升趋势。柯嘉介绍,SBS患者群体承受着难以言喻的痛苦,因为经口进食无法吸收足够的营养,绝大多数SBS患者需长期依赖肠外营养支持,生活基本被静脉“输液袋”束缚。

  替度格鲁肽于2024年2月在内地获批,是针对成人和1岁以上儿童的SBS肠康复治疗的药物。替度格鲁肽通过增加小肠绒毛长度和隐窝深度,提高残余肠道对营养物质的自主吸收能力,打破了SBS患者长期以来无针对性药物的现状。

  如何让罕见病患者有药用、用得到、用得起、用得好,是社会各界的关注重点。广东省卫健委推动罕见病的药物保障难题,建立起“做好医疗服务+优化药品供应+推动医保支持”的罕见病医疗保障工作,减轻罕见病患者的用药负担。

  目前替度格鲁肽可通过穗岁康等惠民保获得较大程度报销。柯嘉表示:“崔伯购买了茂名的‘好心保’,加上创新药物支付补贴,他的药物费用获得报销,降低经济负担。”(完)新闻结尾 一个软妹三个糙汉,分享你的生活经验,收获更多朋友与智慧的相关文章
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