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The author:(作者)aaapublished in(发表于) 2013/12/16 0:35:11 Expensive drugs harder drugs in patients with rare diseases in our country
Xinhuanet, Nanjing, December 15 (reporter Zhu Xudong)-"medication of patients with rare diseases, prescription, you are our major problems. "Experts held recently in Nanjing definition of orphan drug policy national symposium on market access, said is urgently needed in drug reimbursement and open drug listed on the green channel to consider patients ' demands, will be part of the treatment of rare diseases patients start treatment as soon as possible, the maximum saving their lives.
Rare diseases, also known as "orphan diseases", about 50% in childhood-onset, mostly, accompanied by lifelong chronic disease, often involving systemic multiorgan system, in severe cases, causes death, maiming. Six thousand or seven thousand kinds of rare diseases have been identified in the world now, according to the projections, total prevalence of rare disease with more than 10 million people in China.
It is reported that the drugs for treatment of rare diseases because fewer people with the disease, less market demand, high research and development costs, few drug companies to focus on its research and development, so that these pills were vividly called "orphan drug". It is understood that although international has developed a section on therapeutic drugs for rare diseases, but because of the lack of priority measures such as approvals, streamlined processes, and patients with rare diseases can only be "looking at the drug and sigh"; for drugs have been introduced, because of the high prices cannot be reimbursed, many patients are unable to bear the long-term costs of treatment.
Wang Lin, Vice Chairman of Beijing society of rare disease experts believe that the lack of particularity and legal definition of rare disease issues such as, leading to rare disease cannot establish the medical insurance system in our country, it is recommended that rare diseases as soon as possible into the scope of national health insurance system to protect, and step up efforts to rescue for patients with rare diseases.
National health insurance Division of the Department of human resources and social security said Director Huang Xinyu, rare disease health care directory developed special attention and concern can be cured relatively mature, experience, comparison of definite disease. Rare disease specialist branch of Shanghai Medical Association Chairman Li introduced in Shanghai, there are 12 kinds of treatable rare diseases have achieved varying degrees of partial Medicare reimbursement and funding assistance, Shanghai primary and middle school students, infants with medical mutual fund management office has formally issued a "rare Coverage of specific drugs into children's Hospital mutual aid Fund" file, which can be used by other provinces and cities draw on.
新华网南京12月15日电（记者朱旭东）“用药难、用药贵是我国罕见病患者面临的主要问题。”相关专家日前在南京召开的孤儿药界定与市场准入政策全国学术研讨会上说，目前急需在药物报销和开通药物上市绿色通道上考虑患者需求，让能被救治的部分罕见病患者尽快开始治疗，最大限度挽救他们的生命。
罕见病又称“孤儿病”，约50％在儿童期发病，大多是慢性、伴随终身的疾病，常累及全身多脏器系统，严重者会致死、致残。目前全球已确认的罕见病达六七千种，根据推算，我国罕见病总患病人口超过一千万。
据悉，治疗罕见病的药物由于患病人群少、市场需求少、研发成本高，很少有制药企业关注其研发，因此这些药被形象地称为“孤儿药”。据了解，虽然国际上已经研发出了部分罕见病治疗药物，但由于国内缺少优先审批、简化流程等措施，罕见病患者只能“望药兴叹”；对于已引进的治疗药物，由于价格昂贵，不能报销，很多患者家庭无力承担长期治疗费用。
北京医学会罕见病分会副主任委员王琳等专家认为，罕见病的特殊性及其法律界定的缺乏等问题，导致我国罕见病医疗保险制度无法确立，建议尽快将罕见病纳入国家医保的制度保障范畴，同时加大对罕见病患者的救助力度。
国家人力资源和社会保障部医疗保险司管理处处长黄心宇表示，罕见病的医疗保障目录制定会特别重视和关注可治的、经验相对比较成熟的、疗效比较明确的疾病。上海市医学会罕见病专科分会主任委员李定国介绍，目前在上海，已有12种可治疗的罕见病不同程度取得了部分医保报销和基金互助，上海市中小学生、婴幼儿住院医疗互助基金管理办公室已正式下发“关于罕见特异性药物纳入少儿住院互助基金支付范围”的文件，这些进展可以被其他省市借鉴。
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