|
艾滋病男同的自我救赎
来源：瞭望东方周刊 2010年08月04日17:21
如果哪天“美丽人生”消失了，对上海近万艾滋病毒感染者来说，肯定会有失恋的感觉
《望东方周刊》记者钱亚平 | 上海报道
7月盛夏，上海青浦。一间阴暗潮湿的民房里，蔡明（化名）躺在凌乱不堪的床上，成群结队的蚊蝇在他上空盘旋。这个21岁的艾滋病毒感染者全身多处溃烂，散发出腐烂气味。
艾滋病毒感染者周易和几位病友凑了6000元把他送进医院，蔡明得救了。
“应对艾滋病，政府总有盲区，这恰恰是我们的空间。”周易告诉《望东方周刊》。他是上海“美丽人生互助会”会长，“我们抱团取暖，希望能等到艾滋病被治愈的那天。”
“歧视和耻辱感是艾滋病防治的主要障碍。”7月18~23日在维也纳召开的第18届世界艾滋病大会上，国际艾滋病协会主席蒙塔内尔沉重地说。
在中国，虽然近年来政府部门对艾滋病的防控效果斐然，然而上述障碍同样严重存在，于是一群艾滋病毒感染者和病人开始进行自我救赎。
“美丽人生互助会”的成员全是感染者和病人，目前已有近70名志愿者，其干预过的对象超过千人，登记在册的病友有300多人。
周易自豪地说，这个工作量是上海任何一个区级疾控中心都无法比拟的。
“权利，从此时此地开始。”第18届世界艾滋病大会的这一主题，同样成了他们的追求。
“知而不信，信而不行”的高学历“男同”
浦东九六广场一间咖啡厅里传出爵士乐，坐在本刊记者对面的周易斯文白皙，穿着白色POLO衫和牛仔裤，笑起来十分阳光，40岁的他远比实际年龄显得年轻。如果不是“自曝家门”，根本看不出他是个艾滋病毒感染者。
他是因为男男性行为感染的。2003年一次烂醉后的“偷食”，彻底改变了他的人生。
那时疾控中心对艾滋病人屡有兴师动众“追捕”之举，“去检查时我的姓名、地址和联系方式都是捏造的。”
在焦躁不安中，报告出来了，最后一丝侥幸被彻底击碎。对这段痛苦的回忆，周易只在博客里有过描述：我没有怨他（那个传染者），我宁可认为他是不知情的⋯⋯
“美丽人生”干预过的大部分病友是通过“男男”性行为感染的。2008年底，上海市疾控中心和瑞金医院发布的一项研究结果表明，上海地区男男性接触人群中艾滋病毒感染率已接近5%。
四川省资阳市疾控中心专家顾谦跟踪的艾滋病案例中，同样有相当比例是男同性恋者，其中大多具备高学历，而且迫于社会压力与异性组建了家庭。
顾谦感到困惑，周易这样的高学历“男同”完全了解艾滋病预防知识，但往往“知而不信，信而不行”。更可怕的是，婚姻不能让他们忠于家庭，性取向会刺激他们不断“偷食”，而“偷食”就更不注意防护，这也使得性病艾滋病越来越轻易地向普通人群扩散。
捏着一纸阳性检测报告，周易的生命慢慢褪色。那时，艾滋病抗病毒治疗费每月高达2万元，这让收入不菲的周易也深感无力。
2004年，国家出台“四免一关怀”政策，为艾滋病人免费提供抗病毒药物，这让周易重燃起生的希望。他来到疾控中心，以真实信息开始接受免费治疗。
通过查阅资料，“我从病人变成了专家”，周易笑着说。艾滋病人身份都十分隐蔽，大多通过QQ群和“同志”论坛交流。在网络上，他扮演起咨询师的角色，并开始出手援助受困病友，越来越多的病友汇聚在他身边。
一次艾滋病友聚会，周易发现来的人竟然挤满了6桌。此时，他已拿出了四五万元积蓄帮助病友。他意识到，相对于病友庞大的人群，一己之力过于微薄，建立一个常设组织迫在眉睫。
阳性，他们已能坦然接受
2006年春，上海“美丽人生互助会”在闸北区一间酒店式公寓挂牌成立。这个更像是单身公寓的办公场地源于一位澳大利亚老太太的捐助。
隔几天，就会有几位愁眉苦脸、惊慌失措的人敲开办公室大门，他们怀疑自己染上艾滋病，又害怕确诊，巨大的恐惧压得他们透不过气。4年来，周易共陪同400名左右疑似感染者去过疾控中心，但其中仅有极少数被确诊阳性。
每隔几周，就会有10名左右刚确诊的艾滋病毒感染者在这里接受艾滋病知识扫盲，这是“美丽人生”干预的第一步。志愿者会给病友一张个人护理表，针对各项身体指标列出对应的要求。比如，如果病友身体指标不乐观，志愿者就会奉劝他远离街边排档；春秋季，他们会提醒病友注意预防流感。
志愿者也会定期出现在上海市各级疾控中心和传染病医院开展咨询，同为艾滋病人，他们更能体会病友的疾苦，指导也更细致入微。
“‘男同’普遍喜欢口交，但我们会奉劝病友们不要这样做，”周易说，因为口腔黏膜破损感染的几率很大，一个细微的创口对艾滋病人可能都是灭顶之灾。
贾文（化名）得知自己感染艾滋病毒的时候才大三。“我觉得死神快眷顾我了”，他整夜游荡在浦东“同志”出没的那些小树林里，一度选择放纵。
周易在小树林边等了贾文3天，终于逮到了他。之后整整一个月，周易一直陪着贾文，陪他哭，陪他回忆他高中时代开始的“爱情”。
贾文最终被他说服开始接受治疗。一年后，他顺利毕业工作，在“美丽人生”志愿者的努力下，他的“恋人”也来上海做了检测，也是阳性，但他们都已能坦然接受。
“也有很多人，确诊后就消失了。”周易说，要做到随访不容易。
“这种病放大了人性中恶的一面”
如今“美丽人生”有4名专职工作人员。每天，周易会将工作分成几个部分，专职人员带领志愿者各行其是。
蔡明也成了志愿者，他伏在文案上整理资料，上午一批新成员刚刚接受完艾滋病知识培训；下午他还要去位于金山的传染病医院做随访。
蔡明的报酬很低，但他不愿说出具体数额。“艾滋病人大多极度自私，即便志愿者的报酬只有一二百元，也会引起他们的不满，因为在他们看来，志愿者是不应该拿报酬的。”
周易在“美丽人生”拿到的报酬是每月750元，刚够他从位于康桥的家往来闸北办公地的交通费。工作人员和志愿者大多另有工作，“美丽人生”提供的费用更多只是象征意义。
志愿者们的好心有时却得不到好报。一位病友以治病为由向周易借债，可拿到钱后却再也不见踪影。前前后后，周易已被骗去近3万元。一位感染者在周易帮助下拿到了免费治疗卡，可第二天他就和网友开房去了。
在“美丽人生”办公室的储藏柜里，珍藏着艾滋病友们亲手制作的手工作品，珠链、蓝印花手袋和篆刻印章，这些物品有时会拿到外国友人的慈善义卖会上拍卖。然而，有一些参与工作的病友却卷着拍卖会上的所得逃之夭夭。
在“美丽人生”的4年里，志愿者们逐渐读懂了艾滋病和人性。“这种病放大了人性中恶的一面。”
随着声名鹊起，周易近几年先后担任了联合国儿童基金会中国爱心大使工作顾问、全球基金艾滋病项目上海专家组成员，并在复旦大学等几所高校担任客座讲师。按理说，周易的名头越大，越能促进人们对艾滋的关注，可这似乎妨碍到其他艾滋组织。
周易曾得到一项国际组织奖项提名，可随后网络上便出现另外一家艾滋病组织的发帖，攻击周易“名利双收”。最终他主动放弃该奖项，一切才恢复平静。
一位接受过“美丽人生”干预的少年在弥留之际，拉着周易的手说了最后一句话：“如果下辈子我是女人，我就嫁给你！”这句话让周易觉得所有的坚持都值得。
防艾也不应超越基本权利
上海干预艾滋病的民间组织约有10多家，而一份艾滋病检测阳性报告把“美丽人生”和其他组织区别开来。
周易认为，同为病友的共情背景有利于组织成员的沟通。“在这里，谁也不比谁更苦，谁也不比谁高贵。”
除了身份的区别，“美丽人生”和其他艾滋病领域的草根组织在理念上亦有根本的不同。上海乐宜组织负责人郑煌向本刊记者介绍，该组织致力于通过干预男性性工作者人群，达到“防治艾滋病传播”的效果。
周易却不认为“美丽人生”有“防艾”责任。他曾听一位医生对艾滋病人劝解，“你应该杜绝性行为，以免传染他人。”听罢，周易怒气冲冲对着医生大吼，“让你永远不要性生活，你试试！”
在“美丽人生”看来，性生活是基本人权，防艾也不应超越基本权利。“权利，从此时此地开始。”周易特别赞同本届世界艾滋病大会的主题，“我们是教病友如何活下去，让他在性行为前告知对方自己有艾滋病不是我们的义务！”
而蒙塔内尔指出的歧视和耻辱感的问题，周易也深有同感。他和一些病友获得了多次与各级政府艾滋病防治官员对话的机会，但场景往往惊人相似：艾滋病友自我鄙视、埋怨，而官员则一边接受奉承，一边教育病友们“痛改前非，回头是岸”。
知名艾滋病防治专家张北川表示，当前防艾理念陷入一种悖论，人们先入为主地认为艾滋病人有原罪，管理部门幻想隔离甚至“消灭”艾滋病人，偏离了防治艾滋病的正常轨道。
耐人寻味的是，疾控部门和一般防艾民间组织碰到一些“烫手山芋”，却常常求助于“美丽人生”。
虽然周易不提“防艾”，但当他偶然发现让自己染病的故友出现在公共浴室时，他郑重地劝诫故友，这样的行为具有危险性。3个月后，周易收到一条短信，故友承诺一定会注意避免传染他人。
太多的防治资金被用来开会、坐飞机
成立至今，“美丽人生”的干预对象人数占到整个上海疾控中心（CDC）稳定的艾滋感染者总人数的三分之一。然而，它至今没有合法身份。和绝大部分艾滋病草根组织一样，“美丽人生互助会”很难以社团形式在民政部门登记注册。
另一些草根组织如上海乐宜最终选择了在工商部门注册，这也意味着他们必须拿出至少十分之一的公益基金用于纳税。没有合法身份，此类组织很难从政府渠道获得资金支持，维系日常运作的费用全靠不多的国际基金捐助。
杭州西子湖畔，长三角的艾滋病友曾有过一次聚会。会上，周易大胆表露理想，却被参加过艾滋公益工作的老病友生硬地打断。“没有钱，理想都是空话。”
艾滋病防治的资金问题不仅是本届艾滋病大会上激辩的焦点，也是许多基层防艾组织争斗的焦点。在和不少防艾组织负责人的交往中，周易嗅到了一丝变质的味道：“大家的话题中心总是项目书、招标、资金。”
2002年后，专注于艾滋病干预项目的国际基金越来越多地进入了中国，政府每年用于防艾的资金也在增加，但其中大部分项目落入具备政府背景的相关组织手中，“艾滋病防治方面有太多的钱被用来开会、坐飞机。”周易说。
本刊记者曾造访过一个在浦东民政局注册的防艾组织，尽管负责人表示该组织没有政府背景，但其办公场所和设备均由政府提供，而众多国际基金资助的项目也由他们实际支配，工作人员的待遇远优于“美丽人生”成员。
让人匪夷所思的是，拿到大笔项目资金的这个防艾组织并不直接面对艾滋病高危群体，他们甚至不认识艾滋病人。“不，他们认识我一个。”周易笑着说，一脸不屑。
尽管艰苦，但周易决心把“美丽人生”坚持下去：“如果哪天‘美丽人生’消失了，对上海近万艾滋病毒感染者来说，肯定会有失恋的感觉。”
- 艾滋病早期治疗是康复与延长30～60年生命的保
- 艾滋病免疫重建的重要意义是挽救生命的根本
- 从食品植物研究开发的治疗艾滋病新药三合皂甙
- 康生丹颗粒免疫实验提示符合艾滋病、肿瘤等应
- 鸡尾酒疗法并非万能，抗药性与毒副作用导致联合疗法与中药疗法应用的迫切性
- 康生丹配合西药治疗AIDS总结
- 三合皂甙，康生丹片
- 中药康生丹治愈艾滋病中医论析
-
-
AIDS and men with self-salvation
Source: Oriental Outlook at 5:21 p.m. on the August 4, 2010
If some day, "Beautiful Life" is gone, of Shanghai for nearly ten thousand people living with HIV, will surely feel lost love
"Look the East Weekly" Qian Yaping | Shanghai reports
July summer, Shanghai Qingpu. A dark, damp houses, the Cai Ming (alias) lying on bed messy, hordes of mosquitoes hovering over him. The 21-year-old HIV-infected systemic multiple ulcers, emitting a rotten smell.
Book of HIV and several patients have to scrape together 6,000 yuan to send him to the hospital, Cai Ming saved.
"Responding to AIDS, the government always have blind spots, this is precisely our space." Yi told to "look the East Week." He is a Shanghai "Beautiful Life Mutual Aid Association" President, "We Baotuan heating, hoping to be cured of AIDS until the day."
"Discrimination and stigma is a major obstacle to AIDS prevention." July 18 ~ 23, held in Vienna in the 18th World AIDS Conference, the International AIDS Society, said the main 席蒙塔内尔 heavy.
In China, although in recent years for AIDS prevention and control of government departments striking effect, however, the very existence of the same obstacles, so a group of HIV-infected people and patients begin to self-salvation.
"Beautiful Life Mutual Aid Association," all members of the infection and the patient now has 70 volunteers, the object of its intervention had more than thousand patients have registered more than 300.
Book is proud to say that this effort is a district of any CDC Shanghai can not match.
"Right from the start here and now." 18th World AIDS Conference, the theme became their pursuit of the same.
"Knowing and not a letter but no" highly educated "men with"
96 Plaza Pudong heard a jazz coffee shop and sat opposite of correspondents Book of refined white, wearing a white shirt and jeans, POLO, very sunny smile, 40 years old, he looked younger than actual age. If not, "exposes the home," do not see that he is infected with HIV.
He is that MSM infection. After 2003, a drunk, "stealing" and completely changed his life.
CDC on AIDS had quite a time, launching a campaign to "hunt" move, "to check my name, address and contact is fabricated."
In the restless, the report came out, was completely crushed the last vestiges of luck. The bitter memories of the Book had only described in the blog: I do not blame him (the infected person), I would rather that he was unaware of ⋯ ⋯
"Beautiful Life" intervention most patients have been through "Male male" sex infection. By the end of 2008, Shanghai Ruijin Hospital, CDC and the results of a study released show that in Shanghai MSM HIV prevalence among people close to 5%.
Ziyang City, Sichuan Province, Qian Gu CDC experts tracking the case of AIDS, also has a considerable proportion of male homosexuals, most of which have high academic qualifications, and social pressure with the opposite sex form a family.
Gu Qian confused, this Book of the highly educated "men with" complete understanding of AIDS prevention knowledge, but often "not know the letter and not do." Even more frightening is that marriage can not allow them to be loyal to the family, sexual orientation, will stimulate continued, "stealing", and "stealing" more pay no attention to protection, this makes more and more sexually transmitted diseases, AIDS, spread easily to the general population.
A paper trail of positive test reports, Book of Life slowly fading. At that time, anti-viral treatment of AIDS as much as 20,000 yuan per month, which makes a lot of money in the Book of income is also deeply weak.
In 2004, the state introduced the "Four Frees and One Care" policy, in order to provide free AIDS antiviral drugs, which makes re-ignite students Book of hope. He came to CDC to start receiving free treatment for real information.
Through access to information, "I became an expert from the patient," Ching said with a smile. AIDS status are very subtle, mostly through QQ group and the "comrades" Forum. The network, he played the role of consultants from and start shot aid stranded sufferers, more and more patients have gathered around him.
Friends of an AIDS meeting, Yi found that people who actually filled to 6 tables. At this point, he has come up with 45 million in savings to help sufferers. He realized that, compared to patients have a huge crowd, his own force was too meager to establish a permanent organization imminent.
Positive, they have frankly accepted
The spring of 2006, Shanghai "Beautiful Life Mutual Aid Association" in the Zhabei District apartments listed a set. This is more like a crib from an Australian woman office space contributions.
Ge Jitian, there will be some anxious, panic-stricken people knocking on office doors, they doubt themselves infected with HIV, and fear confirmed, the weight of their great fear of suffocating. 4 years, the Book of Changes, accompanied by a total of 400 suspected infections've been around the CDC, but very few have been diagnosed positive.
Every few weeks, there will be about 10 newly diagnosed HIV-infected people receiving AIDS literacy here, which is "Beautiful Life" interventions. Patient volunteers will form a personal care, health indicators for the corresponding requirement listed. For example, if patients have health indicators are not optimistic, volunteers will be advised that he stay away from street food stalls; spring and autumn, they will remind the sufferers in the prevention of influenza.
Volunteers also regularly appears in the Shanghai CDC and Infectious Diseases Hospital of all levels of consultation with the AIDS, they could better understand the patient's suffering, guiding more nuanced.
"'M with the' universal love oral sex, but we will advise, she has not to do so," Yi said, because the probability of infection of oral mucosa, large, a slight wound on AIDS may have been drowned.
JIA (a pseudonym) that he was infected with HIV when it is junior. "I think I favor the death fast," he all night wandering in Pudong, "comrades" spotted the small woods, once chosen indulgence.
Book at the edge of the wood so the JIA 3 days, finally caught him. After a whole month, I Ching has been accompanied JIA, cry with him, with him memories of his high school era of "love."
JIA was eventually persuaded to start his treatment. A year later, he graduated and work in "Beautiful Life" volunteer efforts, his "lover" also came to Shanghai to do the test is positive, but they have been able to accept it.
"A lot of people, disappeared after diagnosis." Yi said, to do follow-up was not easy.
"This disease has enlarged the evil side of human nature"
Today, the "Beautiful Life" has four full-time staff. Every day, the work will be divided into several parts of The Book of Changes, full-time staff and lead volunteers on parallel tracks.
Cai Ming became a volunteer, he fell on his copy on order information, am just a group of new members have accepted AIDS training; afternoon he wanted to go to hospital for infectious diseases in Chin up.
Cai Ming's return is very low, but he declined to give specific amounts. "Most people with AIDS is extremely selfish, even if only 12 hundred dollars reward volunteers, will lead to their dissatisfaction, because in their view, volunteers should not get paid."
Book of the "Beautiful Life" to get compensation is 750 yuan per month, just enough to Cambridge from his home in Zhabei between land transportation office. Most of the staff and volunteers work otherwise, "Beautiful Life" provides just the cost of more symbolic significance.
Volunteers of the kind sometimes can not pay. The grounds of a Patient with medical treatment to the Book of borrowing, but no longer can take their money disappeared after. Ins and Outs, Book of Changes has been cheated out of nearly 30,000 yuan. An infected person to get help in the Book of the free treatment cards, and users can open the next day he went to the room.
In "Beautiful Life" office storage cabinets, the collection of the AIDS handmade handmade works of the faithful, beads, blue print handbags and carving, these items sometimes get the foreign friends of charity sale at auction. However, some patients have involvement of the auction proceeds are rolled away.
In "Beautiful Life" 4 years, volunteers have gradually read the AIDS and humanity. "This disease has enlarged the evil side of human nature."
As to fame, The Book of Changes in recent years served as a consultant for UNICEF goodwill ambassador in China, the Global Fund AIDS project in Shanghai members of the Group, and Fudan University as a guest lecturer at several universities. Stands to reason that the name of the first Book of the greater, the greater concern for people on AIDS, but this seems to hinder other AIDS organizations.
Book awards have been nominated by an international organization, can then appear on the network will post another one AIDS organization to attack Book "fame and fortune." Eventually he offered to give up the prize, things were calm.
Who receives it "Beautiful Life" intervention in the dying boy, took the hand of Ching said the last sentence: "If the next I am a woman, I will marry you!" Book of words to insist that all deserve.
AIDS prevention should not be beyond the basic rights
Shanghai intervention about AIDS, more than 10 civil society organizations, and a positive HIV test report of the "Beautiful Life" and other organizations to distinguish.
Book of the view that empathy with the patient's background is conducive to communication between members. "Here, no one suffered more than anyone else, no one noble than anyone else."
In addition to the difference between identity, "Beautiful Life" and other grassroots organizations in the AIDS field have fundamentally different ideas. Shanghai Le Yi Cheng Huang organization responsible for the introduction of correspondents, the organization dedicated to male sex workers through intervention in the crowd, to "control the spread of AIDS" effect.
Book does not think "Beautiful Life" have "AIDS prevention" responsibility. He heard a doctor on AIDS counseling, the "you should stop having sex to avoid infecting others." Listening, anger, irritability week against doctors shouted, "Do not let your sex life forever, you try!"
In "Beautiful Life" appears, is a basic human sexuality, AIDS prevention should not be beyond the fundamental rights. "Right from the start here and now." Yi particularly agree with the theme of this World AIDS Conference, "We are teaching sufferers how to live, let him tell each other they have sex before AIDS is not our duty!"
And Montaner noted that the issue of discrimination and stigma, Yi also shared his feelings. He and some patients received a number of officials of all levels of government AIDS prevention opportunities for dialogue, but the scenes are often strikingly similar: AIDS patients and self-contempt, blame, and officials while receiving praise, while education, she has "repentant repent and be saved . "
Well-known AIDS expert, said Zhang Beichuan, the current AIDS prevention concepts into a paradox that people predisposed to think that AIDS has original sin, management fantasy isolation and even "destroy" AIDS, AIDS prevention and treatment deviated from the normal track.
Interestingly, disease control departments and the general AIDS prevention non-governmental organizations met with some "hot potato", but often resort to "Beautiful Life."
Although the Book does not mention "AIDS prevention", but when he happened to find yourself sick of old friends appear in public bathrooms, he solemnly exhorted old friends, such behavior is dangerous. After 3 months, Ching received a text message, old friends undertakes to pay attention to avoid infecting others.
Too much control of funds used to meet plane
Since its establishment, "Beautiful Life" of the intervention accounted for the Shanghai Center for Disease Control object number (CDC) HIV-infected stable one-third of the total number. However, it has no legal status. And most of the grass-roots organizations, like AIDS, "Beautiful Life Mutual Association," it is difficult to form associations registered in the civil sector.
Other grass-roots organizations such as the Shanghai music should chose the registration in the industrial and commercial sector, which means they have to come up with at least one tenth of the public welfare fund for tax. No legal status, such organizations is difficult to obtain financial support from government sources, the cost of maintaining the daily operation of the few international funds depends entirely on donations.
Hangzhou West Lake, the Yangtze River Delta of AIDS patients there had been a party. At the meeting, revealed Book of bold vision, he was participated in AIDS patients have stiff old public work interrupted. "Without money, the ideal is meaningless."
AIDS funding issue is not only the current focus of AIDS Conference heated debate, the struggle of many grass-roots organizations, the focus of AIDS prevention. And the number of AIDS prevention organizations in the head of the exchanges, the Book of smell a trace of a deterioration of the flavor: "It is always the topic of center projects, tendering, financial."
After 2002, focusing on AIDS intervention program more and more international funds into China, the annual funding for AIDS prevention is also increasing, but most projects fall into the background with the relevant government organizations, and the "AIDS Control has too much money to be used to meet fly. "Yi said.
Correspondents had visited a Civil Affairs Bureau in Pudong, registered in the AIDS prevention organization, said the organization despite Fuze without government Beijing, Dan its office space and Shebei by the Government to provide Er numerous international projects financed by the Fund by the Tamenshiji Zhi Pei Ye the staff of the treatment is far better than "Beautiful Life" members.
Ridiculous, is to get this large project funding AIDS prevention organization does not directly face the AIDS high-risk groups, they did not even know people with AIDS. "No, they know me." Yi said with a smile, a look of disdain.
Despite the hardship, but the Book of Changes determined to "Beautiful Life" stick: "If some day 'Beautiful Life' is gone, in Shanghai for nearly ten thousand people living with HIV, will surely feel lost love."
|
