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标题: 病毒性肝炎：不只是一个沉默的杀手，也是一个消音器 [打印本页]

作者: StephenW 时间: 2018-3-1 19:26 标题: 病毒性肝炎：不只是一个沉默的杀手，也是一个消音器

Viral hepatitis: not just a silent killer but also a silencer

On Zero Discrimination Day (March 1st), the World Hepatitis Alliance (WHA) is encouraging the hepatitis community to challenge misconceptions and speak out about the devastating impact of stigma and discrimination across the globe.

Raquel Peck 1 Mar 2018

Stigma and discrimination around viral hepatitis has long prevented people from speaking openly about their illnesses. For those brave enough to disclose their status, their reward, more often than not, may be social exclusion, diminished employment opportunities or unjust barriers to receiving healthcare. This harsh reality can have a devastating impact on an individual’s personal life and psychological well-being and prevent people from accessing much-needed diagnostics and treatment. There is no doubt that stigma and discrimination further perpetuate the epidemic of viral hepatitis.

The findings confirmed and quantified what we had long suspected: stigma is felt in almost every corner of the globe and its impact is far-reaching.

We recently launched our Holding Governments Accountable: World Hepatitis Alliance Civil Society Survey Global Findings Report, which surveyed civil society organisations from 72 countries to better understand experiences of stigma and discrimination across the world. The findings confirmed and quantified what we had long suspected: stigma is felt in almost every corner of the globe (people from 93% of countries surveyed reported stigma and discrimination to some degree) and its impact is far-reaching (respondents reported on average 6 different types of stigma and discrimination).
Certain forms of stigma were shown to be especially common: almost 3 in 4 respondents report issues with internalised stigma; over half of respondents report having been socially excluded due to their illness; and 42% have experienced stigma and discrimination in the workplace.
However, it isn’t until we hear the personal experiences behind the statistics that we can grasp the true impact of stigma and discrimination. Since working at WHA, I’ve heard so many of these stories: stories from people who were prevented from marrying the person they love to people being stopped from boarding a plane. Accounts like these can be found on our Wall of Stories web platform, which is a space for people to talk openly and freely about their experiences.

One story from China stressed the drastic measures stigma can drive people to take. Dee Lee, Director of Inno Community Development Organisation and hepatitis B carrier was subjected to mandatory testing when applying for a job but desperate for the role, he asked a friend to provide a blood sample. After securing the position, he witnessed stigma and discrimination in the workplace first hand: his colleagues living with the disease were forced to sit at the “hepatitis table” specifically designated for them with a flag revealing their status.
Cheating the test and hiding his status while others were excluded in this way left him feeling guilty and ashamed but inspired to set up his organisation and challenge stigma. Our report found such experiences to be regrettably commonplace with 40% of respondents being excluded or ostracised in the workplace and 40% being denied employment opportunities entirely. While Dee Lee was strong enough to turn his experiences into a positive, for so many others stigma prevents people from fulfilling their potential.
“The person who discriminated against me first was myself” reveals George Kalamitsis, Chairman of Hellenic Liver Patient Association, Greece. Self-stigmatisation can include feelings of blame, worthlessness, internalised shame or a sense that viral hepatitis in a punishment for certain behaviours. It is truly heart-breaking to learn that 72% of people living with the virus experience these feelings. Self-stigma has both emotional and long-term physical consequences, often preventing people from speaking out and breaking down the confidence needed to seek help and access medical care.

Tackling stigma and discrimination will be fundamental to finding the 300 million people living with viral hepatitis unaware, linking them to care and ultimately eliminating viral hepatitis.

In fact, this can be one of the biggest barriers to diagnosis. Misconceptions around transmission routes, prejudice towards the social groups or lifestyles associated with the disease, or fear of discrimination once a diagnosis is confirmed all prevent people from getting tested. Tackling stigma and discrimination will be fundamental to finding the 300 million people living with viral hepatitis unaware, linking them to care and ultimately eliminating viral hepatitis. We are currently conducting a global survey to better understand barriers to diagnosis and the context in which they are experienced. Information gathered will inform future programmes designed to find the ‘missing millions’, so please take five minutes to complete the survey here.
Despite stigma having a devastating impact on so many aspects of an individual’s life and being a hindrance to our elimination efforts, very few respondents felt that their government was effectively addressing it at a national level. In response to this, today on Zero Discrimination Day, we launch our #StigmaStops campaign that aims to highlight the true impact of stigma, dispel myths and encourage people living with the disease to speak out. Find out how to take part and watch our video message here.

Hepatology, Medicine and Policy is now accepting submissions on this and related issues. For more information, visit: www.hmap.biomedcentral.com.

作者: StephenW 时间: 2018-3-1 19:28

病毒性肝炎：不只是一个沉默的杀手，也是一个消音器

在零歧视日（3月1日），世界肝炎联盟（WHA）正在鼓励肝炎社区挑战错误观念，并就全球范围内的耻辱和歧视的破坏性影响发表讲话。

Raquel Peck 2018年3月1日

对病毒性肝炎的污名和歧视早已阻止人们公开谈论他们的疾病。对于那些勇于透露自己地位的人来说，他们的回报往往可能是社会排斥，就业机会减少或接受医疗保健的不公正的障碍。这种严酷的现实可能会对个人的生活和心理健康产生毁灭性的影响，并阻止人们获得急需的诊断和治疗。毫无疑问，耻辱和歧视进一步延续了病毒性肝炎的流行。

调查结果证实并量化了我们长久以来的怀疑：几乎在全球各个角落都会感受到污名，其影响是深远的。

我们最近启动了“政府问责制：世界肝炎联盟公民社会调查全球调查报告”，该报告调查了来自72个国家的民间社会组织，以更好地了解世界各地的羞辱和歧视经历。调查结果证实并量化了我们长久以来的怀疑：几乎在全球各个角落都会感受到污名（93％的受调查国家的人在一定程度上报告了污名和歧视），其影响是深远的（受访者平均报告6不同类型的耻辱和歧视）。

某些形式的耻辱感被证明是特别常见的：几乎3/4的受访者报告了内化的耻辱问题;超过一半的受访者表示因患病而被社会排斥; 42％的人在工作场所遭受羞辱和歧视。

但是，直到我们听到统计背后的个人经验，我们才能掌握歧视和污名的真正影响。自从在世界和谐学院工作以来，我听到过很多这样的故事：那些被阻止与人们结婚的人被阻止登机的故事。像我们这样的账户可以在我们的Wall of Stories网络平台上找到，这是一个让人们公开自由谈论他们的体验的空间。

来自中国的一个故事强调，耻辱可以推动人们采取激烈的措施。 Inno社区发展组织和乙肝携带者的负责人Dee Lee在申请工作时遭到强制检测，但对这个角色绝望，他要求一位朋友提供血液样本。在确定职位后，他亲身目睹了工作场所的耻辱和歧视：患有这种疾病的他的同事被迫坐在专门为他们指定的“肝炎台”上，并用一面旗帜显示其身份。

以这种方式排斥测试并隐藏自己的地位，而其他人被排除在外，这让他感到内疚和羞愧，但却受到鼓舞，以便建立自己的组织并挑战羞辱。我们的报告发现，40％的受访者在工作场所被排斥或被排斥，40％的受访者完全被剥夺了就业机会，这种经历令人遗憾地很平常。虽然迪伊强壮到足以将他的经历转化为积极的态度，但其他许多人的耻辱却阻止了人们发挥潜力。

希腊希腊肝病患者协会主席George Kalamitsis透露：“首先歧视我的人就是我自己”。自我耻辱感可能包括责备感，无价值感，内化羞耻感或病毒性肝炎对某些行为的惩罚。知道72％的病毒感染者会感受到这种感觉，这真是令人心碎。自我耻辱既有情绪上的影响，也有长期的身体后果，往往会阻止人们发言并打破寻求帮助和获得医疗护理所需的信心。

解决耻辱和歧视问题对于发现3亿患有病毒性肝炎的人无法察觉，将他们与护理并最终消除病毒性肝炎联系起来至关重要。

事实上，这可能是诊断最大的障碍之一。传播途径的误解，对与疾病有关的社会团体或生活方式的偏见，或者一旦确诊诊断都害怕歧视，都会阻止人们接受检测。解决耻辱和歧视问题对于发现3亿患有病毒性肝炎的人无法察觉，将他们与护理并最终消除病毒性肝炎联系起来至关重要。我们目前正在进行一项全球调查，以更好地了解诊断障碍和他们所经历的环境。收集到的信息将为旨在发现“数百万人失踪”的未来计划提供信息，因此请花5分钟时间完成此处的调查。

尽管耻辱对个人生活的许多方面产生了破坏性影响，并且阻碍了我们的消除努力，但很少有答复者认为他们的政府正在国家层面上有效地解决这个问题。针对这一点，今天在零歧视日，我们启动了#StigmaStops活动，旨在强调污名的真正影响，消除神话并鼓励患有此病的人们大声疾呼。了解如何参与并观看我们的视频讯息。

肝病学，医学和政策现在接受关于此问题和相关问题的意见。欲了解更多信息，请访问：www.hmap.biomedcentral.com。

作者: 遥望曙光 时间: 2018-3-3 16:17

是啊，国内入园、招工两对半依然是必检项目，只是换一种方式，要求个人挂号，以看门诊的形式查，什么时候才能消除歧视，有生之年怕是看不到了！除非有一天治愈性药物的出现！

作者: StephenW 时间: 2018-3-3 16:23

回复遥望曙光的帖子

歧视乙肝人主要是由于医学无知, 医生和政府应该承担全部责任.

作者: 遥望曙光 时间: 2018-3-3 16:29

是啊！规定有了，何人监管执行！禁止查两对半都多少年了，仍然流于形式

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