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罕见病患者面临诊治两难窘境 盘点各国救助与社会保障措施

2017-09-14 14:52:22   央广网

通过比较可以看出,世界卫生组织已公布的罕见病有5000-6000种。俄罗斯卫生部承认的只有230种,可以获得免费治疗的只有区区24种。即便如此,在俄罗斯想要得到这24种法律规定的罕见病免费医疗救治也是难上加难。联邦政府的资金医疗预算只占GDP的0.2%,一些地区政府直接拒绝支付罕见病的药品和治疗费用。目前莫斯科是俄罗斯唯一能为24种罕见病病人提供药物的地区。如果市长发现罕见疾病的家庭消耗地方预算,会建议其搬到莫斯科居住,否则没有任何办法在当地接受免费治疗。

澳大利亚:医疗福利计划与药品福利计划双保障 患者无需为治病花销担忧

医疗福利计划和药品福利计划已经成为澳大利亚人的两个疾病保护伞,无论是普通病症还是罕见病,在两个计划的保护下,从求医到问药都无需太过担心花费的问题。

据《全球华语广播网》澳大利亚观察员胡方介绍,澳大利亚自1948年开始实施药品福利计划后,计划清单上的药物种类已经接近千种,其中就包括了很多罕见疾病的治疗药物。凡是上了这份清单的药品,政府都会对药品的价格进行优惠补贴,使药物的售价大大降低。澳大利亚每年对这个清单的重新审查也会让一些罕见病的新的高效药尽早地进入清单。在药品福利计划的扶持之下,几乎没有澳大利亚人会因为一些罕见疾病的药物价格太昂贵而导致家庭经济状况发生巨大变化。

澳大利亚的医疗福利计划保障了患罕见疾病的病人在治疗和住院问题上也不会出现任何经济问题。患者在公立医院住院治疗某种罕见疾病,是不需要花一分钱的,这种免费包括了手术的费用、医生的费用、医院里服用的所有药物的费用、床位费用、病号餐费用等。简单来说,就是当住进公立医院之后,患者可以不带一分钱进去,也不付一分钱就离开。

英国:将在未来几年采取一系列措施 提升罕见病应对能力

今年7月,一个名叫查理的英国小男孩儿牵动着无数人的心。查理出生8个月后被诊断患有线粒体浩劫综合症,无药可医。查理的父母不愿妥协,在7月9日向医院提交了35万人签名的请愿书,希望医院能够将查理送到美国接受治疗。

就目前英国针对罕见病的治疗和社会保障状况,《全球华语广播网》英国观察员侯颖表示,英国卫生部曾经发布首个罕见病的应对策略,以期加大对于罕见病病因和治疗手段研究的支持力度。英国政府将在未来几年采取一系列措施,提升罕见病的应对能力,为患者制定更具个性化的医疗护理方案,建立一批专业化的医疗机构,加大对罕见病治疗的教学和培训力度,提升英国在世界罕见病研究领域的地位。

措施具体包括促进获取资源平等,让每一位罕见病患者遵从清晰而明确的护理途径;为罕见病提供以证据为基础的诊断和治疗,最大程度利用可被患者和专家轻松获取的地区和国家资源;支持专业临床中心提供的高质量临床护理;同时还需尽可能地促进国家医疗系统、研究团体、学术界和产业界的合作,以增进对罕见病及其治疗的认识;支持健康与社会护理专家的教育和培训项目,以使其能更好地鉴别罕见病,更快确诊,并使患者更快得到治疗方法。

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