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关于请求政府紧急进口凝血八因子、抢救血友病人生命的呼吁――给中华人民共和国主席胡锦涛、国务院总理温家宝、国务院副总理吴仪 (北京爱知行研究所 2007年9月2日)
胡锦涛主席:
温家宝总理:
吴仪副总理:
我们是一些血友病患者或关心血友病患者的组织。从2007年7月以来,我们发现专门用于治疗血友病的凝血八因子和凝血酶源复合物供应非常紧张,从7月5日开始,连中国医学科学院血液病医院(即天津血研所)都出现断药,许多血友病患者去医院看病都无法得到及时有效的治疗,致使病情加重,生命垂危,一些城市(北京、沈阳)相继出现病人因此死亡的情况。目前凝血八因子严重短缺的情况不仅没有得到缓解,而且愈加严重。
血友病是一种遗传性疾病。因为血液中缺乏凝血因子,患者不仅极易出血,且一旦出血就无法自行止住,内腔器官出血往往会致命,患者只能靠注射凝血因子止血。血友病人是一批注定终身要依赖血液制品维持生命和健康的人群。
造成这一现象的原因,我们认为主要有:
为阻止血液制品将艾滋病等传染病带入中国,1986年1月30日,卫生部发布《关于禁止进口Ⅷ因子等血液制品的通告》,规定除部分人血白蛋白之外,其他所有血液制品均属于国家禁止进口的药物范畴。
2、国家加强对单采血浆站和血制品生产厂家的管理,一方面加强控制经血传播艾滋病和其他疾病,另一方面导致了血浆采集量的大幅下降,也导致了血制品厂家生产八因子的迟缓。
2004年5月,国家卫生部等在全国开展了一项针对“非法采供血液和单采血浆”的大规模专项整治工作。此后,为了加强控制经血传播艾滋病和其他疾病,理顺对单采血浆站的监督、管理,2006年3月,国家卫生部等九部委制定了《关于单采血浆站转制的工作方案》。2005年全国血浆站由2004年350家裁减到165家,全国血浆产量也明显降低。2005、2006年全国采浆量从5000吨下降到3000吨左右,下降幅度超过40%。这是保障人民大众用药安全的积极措施,但由此却引发了全国性的血制品紧张的状况。
3、我国政府缺乏一个处理血液(制品)供应和安全等事务的高层、多部门和社会参与的协调机制。自从20世纪90年代中期出现的中原血祸(大量卖血浆者感染艾滋病病毒)、到进入21世纪以来发现的大量上海和上海以外地区的血友病人发现感染艾滋病病毒和肝炎病毒、到遍布全国的输血感染艾滋病病毒者,我们却震惊地发现,我国政府一直缺乏一个综合处理相关血液及制品供应和安全事务的协调机制。
血液制品供应和安全是一个伴随人类生命的矛盾,血友病人更是一批血液制品的终身依赖者。在解决这个矛盾的时候,不能头疼医头,脚疼医脚,而是需要综合考量血液及制品供应和安全的各个方面。我们特别认为,血友病人及民间团体参与政府的决策,是解决这个矛盾的不可或缺的资源。
鉴于上述分析,我们请求我国政府采取紧急行动,从国外大量进口凝血八因子等血制品,抢救我国血友病人的生命。为此,我们建议如下:
1、我国政府应解除禁止进口国外凝血因子的政策,尽快引进国外的凝血因子制品,为血友病患者提供更多的选择余地,以弥补国内凝血因子产品供不应求的情况。1986年1月30日,卫生部发布《关于禁止进口Ⅷ因子等血液制品的通告》目的是阻止进口血液制品将艾滋病等传染病带入中国。二十年后的今天,国外血制品技术飞速发展,这个规定已经失去了存在的意义,应当予以废止。开辟进口凝血因子的绿色通道,以解决国内凝血因子紧张的危急局面!各种资料显示,目前发达国家的凝血因子基本上是安全的,质量是有保障的。
2、我国政府成立一个血液制品供应和安全危机特别工作组,一方面处理本次国内市场凝血八因子等严重短缺的问题,一方面制定我国政府长期的血液制品供应和安全问题的相关对策或政策,并制定紧急预案。这个特别工作组应该积极吸纳包括病人和民间团体等所有利益相关方的参与。
如果您的组织支持本项联合声明,请签名支持本项声明。签名联系信箱:bayinzi@gmail.com,抄送:bayinzi@hotmail.com。来信请说明:支持八因子声明、组织名称、组织负责人或联系人信息、组织联系方式。
声明签署团体: 上海血友之家 天津血友病联谊会 北京爱知行研究所 中山大学性别教育论坛影像工作室 山东省血友病联谊会 湖南血友之家 中国血友之家 南京爱之园 湖南友爱之家 重庆血友病康复协会 陕西血友病联谊会 安徽省血友病联谊会 北京益仁平中心 浙江爱心工作组 东珍纳兰文化传播有限责任公司 中国律师观察网 肝胆相照网站 风雨同行编辑部 河南西峡红羽互助小组 健康环境公众教育促进会 糖尿病患者俱乐部 全国经输血感染艾滋病受害者工作委员会 爱白文化教育中心 公民健康状况和受教育权工作组 黑夜日出网站 河北永清感染者互助组 河南省宁陵康乐家 柘城县艾滋病防治民间促进会 湖北血友之家 西南石油大学青年志愿者协会 新郑爱卫阳光家园 焦作大学红丝带爱心联盟 亚洲促进会(Asia Catalyst)
2007年9月13日发布
A Joint Statement Addressed to Mr. Hu Jintao, President of People’s Republic of China, Premier Wen Jiabao, and Vice Premier Wu Yi to ask the Government to immediately import Factor VIII to save the lives of haemophiliacs.
We are groups of haemophiliacs or of advocates for haemophiliacs. Since July 2007, we have found that haemophilia’s main treatment drug, Factor VIII concentrate and prothrombinase complex (PCC), is in dangerously short supply. Since July 5, even the Institute of Hematology and the Chinese Academy of Medical Science’s Blood Disease Hospital have lacked supplies of Factor VIII. Many haemophiliacs cannot get timely and efficient treatment in hospitals, plunging them into a crisis. Without Factor VIII, their lives are in danger. The lack of Factor VIII has already caused the deaths of [how many?] haemophilia patients in several cities, including Beijing and Shenyang. Meanwhile, the shortage of Factor VIII continues to grow.
Haemophilia is a genetic disease. Patients suffer from low levels of plasma clotting factors . They are vulnerable to injuries: once a haemophiliac starts to bleed, there is no way to stop the bleeding except by an injection of the missing clotting factor. Without this timely injection, internal bleeding may cost the patient’s life. There is no cure for haemophilia; patients rely on the blood product to maintain their lives and health.
We believe the following factors lead to the shortage of Factor VIII.
1. In order to prevent the importing of HIV-tainted blood products into China, on January 30, 1986, the Ministry of Health issued a circular to prohibit importing of Factor VIII and similar blood products. With the exception of human albumin, no blood products are permitted to be imported into China.
2. In recent years, the government has strengthened the regulation and management of plasma collection centers and the blood product industry. On the one hand, this efficiently reduces the spread of HIV/AIDS and other diseases. On the other hand, it contributes to a sharp decrease of plasma collection, which in turn leads to the lower production of Factor VIII by Chinese blood product companies.
In May 2004, the Ministry of Health launched a national campaign to curb “illegal blood and plasma collection.” Afterwards, in order to control the spread of blood transmitted diseases such as HIV/AIDS and better regulate and supervise plasma collection centers, in March 2006, the Ministry of Health and eight other ministries issued the Working Solution to Transform Plasma Collection Centers. As a result, the number of plasma collection centers decreased from 350 in 2004 to 165 in 2005. Plasma collection also dropped significantly: from 5,000 tons in 2005 to 3,000 tons in 2006, a 40% decrease. These are positive measures to ensure medicine safety, but they also caused a shortage of blood products nationwide.
3. The Chinese government lacks a high-level co-ordination mechanism to handle blood product supply and safety, one that would bring multiple government agencies and other actors together. This is true despite the multiple blood supply scandals of the past decade: from the large number of plasma sellers who contracted HIV via inappropriate collection procedures in the mid-1990s; to the many haemophiliacs in and outside Shanghai who find themselves carrying HIV and hepatitis since the new millennium, to people infected with HIV/AIDS via blood transfusions and blood products. In the wake of all these disasters, we are shocked to find that our government has never had a comprehensive co-ordination mechanism in place responsible for the blood supply and for the safety of related blood products.
The supply and safety of blood product is a matter of serious concern to all people. But haemophiliacs, in particular, cannot live without blood products. When we examine this controversy, we should not only look at the short term, but also understand the long-term implications of the current crisis. We strongly believe that participation of haemophiliacs and civil society groups in the government’s decision-making is a key component of any future solution.
Thus, we call on the government to immediately import Factor VIII to save the lives of haemophiliacs in China. Our suggestions are as follows:
1. The Chinese government should abolish the ban of imports of clotting factors, and should immediately import a large volume of clotting factor products. This will give Chinese haemophiliacs more options, and complement the shortage of domestic clotting factor production. In 1986, the Ministry of Health issued a circular to prohibit the import of Factor VIII and similar blood products to prevent the inflow of HIV/AIDS and other diseases. However, 20 years later, overseas blood product technology has experienced rapid progress. The 1986 circular no longer fits the circumstances, and should be abolished. The government should open rapid channels to import clotting factor products to solve the domestic shortage. Research and documentation has shown that clotting factor products in developed countries are generally safe, and that they have guaranteed quality. 2. The Chinese government should set up a special working group to deal with the crisis of blood product supply and safety. This group can work to solve the current domestic shortage of Factor VIII. Meanwhile, it should design policies to ensure long-term blood product supply and safety, as well as solutions for urgent crises such as the current one. This group should actively involve all stakeholders, particularly groups representing haemophiliacs and other relevant civil society organizations.
If your group supports this joint announcement, please sign the letter. Please send emails to bayinzi@gmail.com and copy to bayinzi@hotmail.com. Please include your supporting statement to this announcement, name of the organization, contact details of the organization leader or contact person, and organization’s contact details.
Signed:
Haemophilia Home of Shanghai Haemophilia Patients Sodality of Tianjin Beijing Aizhixing Institute
声明签署团体: 上海血友之家 天津血友病联谊会 北京爱知行研究所 中山大学性别教育论坛影像工作室 山东省血友病联谊会 湖南血友之家 中国血友之家 南京爱之园 湖南友爱之家 重庆血友病康复协会 陕西血友病联谊会 安徽省血友病联谊会 北京益仁平中心 浙江爱心工作组 东珍纳兰文化传播有限责任公司 中国律师观察网 肝胆相照网站 风雨同行编辑部 河南西峡红羽互助小组 健康环境公众教育促进会 糖尿病患者俱乐部 全国经输血感染艾滋病受害者工作委员会 爱白文化教育中心 公民健康状况和受教育权工作组 黑夜日出网站 河北永清感染者互助组 河南省宁陵康乐家 柘城县艾滋病防治民间促进会 湖北血友之家 西南石油大学青年志愿者协会 新郑爱卫阳光家园 焦作大学红丝带爱心联盟
September 13, 2007 文章提交时间:2007/9/13 上一篇: 代理词―某女上诉北京某军队医院和北京市红十字血液中心医疗损害赔偿纠纷案下一篇: 上海血友病人及其家属和律师向国家药监局举报上海生物制品研究所生产、销售假药的违法行为
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