翻译:我的“防艾”道路 高耀洁

我的“防艾”道路 高耀洁  (2001年) 

在一次会诊的机会,我遇到了一位因手术输血感染艾滋病的妇女,她死去了,给人
们留下了深思,艾滋病的血液播散意味着巨大的灾难。从那时起我走上了艰难而坎坷的
“防艾”道路。在这个不平坦的路途中,我已走了五年多了,以我医生的神圣职责,为
了我们的民族,我要唤起民众,教育民众懂得“防艾”知识,减少艾魔给人们造成的灾
难。

一、“防艾”宣传的起因郑州市某部队医院收住了一位姓巴的女病人,腹部有肿块
,高烧不退,十六天未能确诊。1996年4 月7 日,该医院请我会诊,下午四时我见到病
人,她极度消瘦,高烧持续在39度至40度,口腔溃烂,腹部隆起,其皮肤表面出现暗紫
色斑点,压之不褪色。做了全身检查,又抽了腹水、胸水,化验结果:“未发现癌细胞
。”病人害的啥病?从紫斑形态,使我怀疑到“卡波西氏肉瘤”,这是不是一个艾滋病
人?抽血化验艾滋病病毒抗体,果真病人患的正是艾滋病。十几天后巴某死了,她才42
岁。她是一年多前做子宫肌瘤手术时输血感染的,她的丈夫和两个孩子均未被艾滋病毒
感染,这是我第一次见到的艾滋病人。

令人吃惊的是:病人输的血是血库的血。血库被艾滋病病毒污染,那受害人绝不止
这一位!这只是浮出水面的冰山一角,深深刺痛了我的心。“人的生命只有一次”,艾
滋病肆无忌惮地横行,会有多少无辜者丧命于艾魔铁掌之下!这种病目前在世界上仍无
疫苗可防,无药可医,只能预防其传播与蔓延。上述病人从输血感染致死,时间将近两
年,其家属任何人均未被感染,这说明了预防艾滋病是很容易成功的,但必须让人们懂
得、掌握预防艾滋病的知识,了解预防艾滋病的紧迫性。

我听说巴某死后,她丈夫躺在她坟前睡了十多天。他后悔不应该给病人输血(术中
输血是她丈夫要求的。)这一事实使我更难过。时下,在防艾宣传中,主要是强调性传
播、嫖娼、卖淫、婚外情、静脉吸毒等传播途径,而很少提及医源性“血祸”之危害,
这更激起了我关爱生命的责任感。

1996年秋,我开始自费编印第一批“防艾”资料。我当时经济状况十分困难,只有
500元,河南文史研究馆拿出800 元,宋庆龄基金会拿出400 元,这1700元钱共印出一万
二千份资料。1996年12月1 日“国际艾滋病日”那一天,文史馆出车,在同事们的协助
下,我们走遍了郑州市5个长途汽车站,三天内向群众发放了800 多张宣传资料。

第二年,我得知 及 滋病的病人农村里更多。因“保密”我很难和他们联系。这
些情况激起了我宣传“防艾”的信心和勇气。我陆续地写啊!编啊!印啊!讲啊!利
用各种形式向群众宣传预防艾滋病的知识。每年编印出二期资料,每张用八开的纸,
现已印出九期,共计三十余万张。除第一期外,每期费用3000元至5000元,这些钱都
是我拼命写稿、讲课挣来的。

这几年,我的“防艾资料”的散发方式很多。最大途径是无偿送给河南省防疫站,
从那里再发往基层医务工作者或病人家属们手中。同时,也通过熟人在汽车站、火车的
车厢内发给群众。某些计划生育指导站也是一个发放点。还有一些报社、杂志社替我发
放。更让我感激的是六期、八期资料有万余张是河南省妇联妇儿工作委员会往县级妇联
发放的,并证实已发到农民手中。有些熟人找我看病时,我也托他们带往农村发放。另
一出路是有些报纸、杂志发出通知,告诉群众,请她们来信索取。我每年向群众讲“保
健知识”课30至70多场。自1996年后,我把艾滋病知识加入了讲课内容,同时在课堂上
向听众发放“防艾资料”。不少人说:“高教授宣传防艾入迷了。”

二、“防艾宣传”的坎坷路在五年的“防艾宣传”活动中,向我索取资料者越来越
多。仅最近一年多来,我就收到了三千多封来信,而接到的电话是信函的十多倍。除骗
子之外,我对来信必复,应该说是一帆风顺吧。其实不然。如一次我和丁老师拿着防艾
资料到一家夜总会向“三陪”小姐散发时,小姐们如洪水猛兽般躲来躲去。有位大胆的
小姐接过资料看了看,见是艾滋病的资料,便揉作一团扔进垃圾篓,并嚷着说:“老太
婆,还不快走!快走吧,这些东西让客人见了谁还会来这儿,他们不以为我们有艾滋病
才怪呢!”夜总会的老板闻讯赶来,像见了仇人似的,将我们撵了出去。诸如这些事情
并不少见,不但一些娱乐场所,就是政府机关、工厂、企业也少有例外。这其中有个误
区,他们大多数人认为:我不嫖娼、不卖淫,不会得艾滋病。更可怕的是把艾滋病与性
乱划上了等号,说艾滋病是一种不好的病,见不得人的病,有些人甚至连看阅“防艾”
资料也认为是一件丑事。因此,宣传预防艾滋病便遭到了许多白眼和冷落。而艾滋病病
人更不用说了,他们走在路上,别人看见就跑开,有的跑得急了,以致于连滚带爬……
病人的周围邻居不敢和他对面说话,更不敢串门,甚至全户迁走,人死了谁也不敢去抬
棺材,真可谓“谈艾色变”。

鉴于以上情况,我把艾滋病知识编印成书,送给读者,他们也不好意思看。近年来
我又把艾滋病知识编入妇产科书内,这种做法比较理想,未再遇冷落,但出版费用太高
,以我个人的收入状况无法实施。总之,自费宣传防艾之路十分艰 坎坷。

三、我接触艾滋病病人之后自1999年8 月份以来,各新闻媒体一拥而来采访,由此
引来许多信函和电话,使我得知某些地区县、乡、村的艾滋病疫情很严重。1999年11月
我请记者王某前往调查,她回来所谈的情况比我所听说的更严重,主要是血液传播。湖
北桂教授在某村对有卖血史的农民抽血检查艾滋病病毒抗体,提取血样155 人,结果有
96人艾滋病病毒抗体呈“阳性”。这种状况令人震惊!

1999年11月份我联系到12位艾滋病病人,其中8 人因卖血感染,3 人因输血感染,
1 名虽系“三陪女”但她却有卖血史。春节前我给8 名卖血感染艾滋病病人每人寄上100
元,半月后400 元退回,4 张汇款单上写着:“收款人已死。”

2000年3 月18日,我去某村探望艾滋病病人,同时给他们送药。老乡们排着大长的
队,等候看病、领药。其中有一个叫程彦领的中年男子,走在前方说:“大夫你要多少
钱?卖给我一点药吧,我害病快一年了。”他手中拿着几角钱。我说:“不要钱。”我
给他退烧药、健胃药共计一百多片。他说:“是毛主席叫你来的吧?”我带去的300 多
元钱的药很快就发完了,同时拍了30多张资料照片。

此后,该村某人给我打电话索要药物。7 月8 日,他们来人取走了400 元的药,但
他却扣下三分之二。据说他表弟开诊所,他居然把较好的药卖掉了!我得知情况后很痛
心。决定以后亲自去给病人送药,省得再上那些不道德的人的当。

9 月12日趁中秋节,我租了个车,带了八斤月饼,四件 尤 露饮料、两件鲜奶、奶
粉、茶叶(送给协助工作的人)。除此之外,我这次还带了五百多元钱的药(其中360
元是妇女生活杂志社副社长杨方荣捐助的),又去了该村。艾滋病人对我很友好,病人
吴拢非常亲切,我抱着她儿子程威照了几张照片,她拿着药说:“感谢共产党感谢毛主
席”。

一个叫孔金柱的捎来一封信,谈到他们村周边艾滋病的严重性,那里农民们特别恨
“血头”。

后来,我又于10月31日第三次又去了该村,我带了几千张“防艾资料”、2000多本
书和600 多元钱的药,老乡们莫大欢喜。当我问到有关病人时,这才得知吴拢、孔留柱
等已被艾魔夺走了生命。 我借此机会向他们宣传了艾滋病的传播途径,怎样与艾滋病人
相处等等的医学知识。这次我走了五个村,其余四个村有的比原来那个村更严重,因艾
滋病灭门绝户者大有人在。

在漫漫的调查、探望艾滋病人的路途上,我不知道受尽了多少磨难。2 001 年3
月29日早上5点,我从郑州乘火车出发,上午10点到驻马店,换乘长途汽车去新蔡。结
果,因中途堵车,直到晚上八点半才到新蔡,在车上闷了九个多小时。这么长的时间我
拖着七旬高龄的身体,连口水也没能喝上。车上挤得要命,和我一同去的两个小青年闷
得不时跳出车窗透气,而我却只能呆在车里受罪。终于到了目的地下车时,我才发现的
双脚肿得不能走路,双腿疼得几乎无法站立。事情过去许多天了,我想起来还心有余悸

同时我还得知了一个十分有研究价值的信息,即夫妻一方因卖血或输血染上艾滋病
死去,另一方抽血化验艾滋病病毒抗体“阴性”,而时过2~3 年,多次化验仍为“阴性
”,且健康状况良好。如我调查过的石小段、王瑞华、巴秀英、王玉贞等,他们都是因
卖血、输血感染艾滋病而死去的,而丈夫均无恙。如果说,这是因女人容易感 艾滋病
,那么,刘华平、孙华萍等其丈夫因卖血感染艾滋病死亡,而她们却仍健在。由此说明
,在我接触的艾滋病病人中,除因卖血、输血感染艾滋病以及少数儿童系母婴传播之外
,其他传播方式我尚未发现。

四、各种各样的压力与阻力艾滋病是当前世界性瘟疫,我国的病人多在农村,农民
得病死亡多是因贫困而无力医治,更不懂得如何预防,直到死亡还不知害的是啥病。在
驻马店农村,老百姓把艾滋病叫做“怪病”,周口一带叫它“无名热(艾滋病人发热)

我自费搞“防艾”宣传活动、自费给病人送药、寄钱,几年来十几万元付出去了。
而我的生活环境如何呢?大家有目共睹:50多平方米的破旧楼房,家里没有一件像样的
家具,我和老伴七十多岁的年纪了,严冬腊月连暖气也用不上……我在这样的生活条件
下用去十多万元,四处奔波为艾滋病患者做工作,仍不被某些人理解,说我瞎折腾……

我明知道我的努力是杯水车薪,但我还是幻想能够感动更多善良的人们来同情艾滋
病人、善待艾滋病人,特别是 ?滩」露 ,他们需要救助!

各种各样的压力与阻力弄得事与愿违,就拿几个例子来说吧。

1999年12月1 日中午郑州市电视台请我现场播放“防艾知识”,某位领导一下午找
我4次。4点种我去了,她态度很好,说得也很好听。她说:“为了爱护我,艾滋病不是
啥好病。厅里(指卫生厅)说了,河南至今还未发现一名艾滋病人。”而当时,我口袋
里就有个纸条,上面有12个艾滋病人的姓名与地址!

1999年度,我被评为国家教育部关心下一代先进个人,不知什么原因,我未能去北
京领奖,单位也没有落实奖励措施,我只收到了证书及奖牌,究其原因,是怕我见了中
央领导谈河南艾滋病的情况。

2000年3 月18日,我在给艾滋病人送药时拍的照片被单位领导扣下。

2000年8 月中旬《中国新闻周刊》对河南的艾滋病作了采访调查,并写出了较详细
的真实报道,许多报刊转载。又有领导说我擅自为记者提供有关艾滋病疫情的资料,影
响了河南形象。并勒令我以后不准再接受记者的采访。

11月9 日,半个月前定下来的去某高校讲课,该书记电话问我:“下午给学生讲什
么?”。我说:“自我保健知识。”她说:“讲艾滋病吗?”我说:“讲,讲的很少。
”当时中央电视台记者小王在旁。两个多小时后,这场讲课被莫名其妙地取消了,小王
等同志正在拍摄的电视片也被不明不白的停下来了。

11月15日晚,该书记告诉我今后不要见任何记者,并说,不能再讲艾滋病。说得多
了,谁还来河南投资?

还有人告诉我说我家的电话被监控了。这我并没查证落实,我只知道领导们曾询问
与我接触过的人,问她说:艾滋病疫情是不是你告诉高耀洁的?吓得她们再不敢见我了
……

11月19日晚,卫生厅某处长来我家办事,他说:“你见了卫生厅的人,不要说我来
过。”我和他谈到艾滋病的严重性,处长摇着手说:“不敢说,不敢说……”我说:我
自费印的艾滋病资料大量送给河南省防疫站发放,某处长说:“王哲(防疫站副站长)
敢跟你来往?”由此看来,我真像个“防艾瘟神”,详见网络:《揭开河南传播艾滋病
的“血痂”》一文。

五、今后怎么办自去年秋以来,我做了一项防艾知识调查,在一万多人中,能够正
确了解艾滋病传播途径、预防方法者不到15% ,特别对血液传播途径更是一无所知,为
了更好地开展“防艾”工作,本人已编妥了一本近十万字的专业书籍,准备印刷五万至
十万册,现在正在筹款,款到即开印,一旦印出,通过新闻媒体告知广大民众,对农村
基层医务人员、病人、家属,免费赠阅,以便增强他(她)们对艾滋病防御知识的了解
,来抑制其艾滋病的蔓延。

春节前夕,我收到一位小学生的来信,她说:“我妈为我和弟弟上学卖血,得了艾
滋病。现在她的病很重,求求您救救她,我不能没有妈妈……”由此我想到: 滋病孤
儿的父母因艾滋病夺去了生命,这些儿童今后的生活怎么办?特别那些染有艾滋病的孤
儿,为何是好?因对艾滋病的看法有误区,不少人认为这是孩子们的父母造的孽,故而
不肯解囊救助他们,贫病交加的他们睁着大眼睛等待死亡。

元月上旬我去北京参加清华大学召开的“性病、艾滋病学术研讨会”,在大会上有
专家提及艾滋病的孤儿问题。

春节过后,我开始着手调查 ?滩」露? 宜。自3 月19日至4 月7 日,我四次赴开
封所属某某县,一次赴某县、一次赴XX县,发现某某的艾滋病较##县严重,但当地捂盖
子比其他两个县做得棒,我们遭到送出县境及防疫人员往外驱赶之机。不管为何在那个
县我还是走了七个村庄,见了几十位艾滋病人,发现一个新问题,当地“医生”把艾滋
病人作为赚钱的对象,如一个姓陈的村医给病人用地塞米松退热,弄得病人大汗淋漓,
加快死亡。这些艾滋病死者多是青年人,在每一家病人的背后,都会留下1 至3 名遗孤
,有的小孩已出现生活无着落。XX县古吕镇小高庄村,十岁的高岩,其母已死,其父病
重,他十四岁的姐姐高丽已失学。

在古吕镇东湖完全小学,已有近二十名 ?滩」露 ,校外还有多少孤儿则无人统计
,我见到两个女孩,姐姐十岁,妹妹五岁,父母双亡,随叔父婶母生活,其叔婶家还有
两个孩子,他夫妻二人也患有艾滋病。

鉴于以上情况,在近期我分批给孤儿们寄去了两千余元,其中一千元寄给了东湖小
学彭校长,让他救助失学孩子们复学。但无济于事。我只有继续深入调查,拍更多的孤
儿相片,呼吁全社会各界善良的人们向孤儿们伸出援助之手!谢谢大家,谢谢同情孤儿
、救助孤儿的女士们、先生们!

My “AIDS Prevention” Journey  (2001)

By Dr. Gao Yaojie

I met my first AIDS patient, a women who had received and HIV-contaminated blood transfusion, in a clinic. Her death made me reflect that the spread of HIV through the blood supply is a tremendous disaster. From that day forward began my difficult and trying “AIDS Prevention” journey. I have been on this journey for over five years now. I do it for noble calling of medicine and for my nation. I want to wake up the public and teach them how to prevent HIV/AIDS. In this
way, the scope of the disaster that demon AIDS has visited upon humanity can be reduced.

1. The Origins of My “AIDS Prevention” Educational Work

A woman named Ba had been admitted to a certain military hospital in Zhengzhou City. Her abdomen was swollen and she had a high fever that would not go down. Sixteen days after admission, her condition had still not been diagnosed. On April 7, 1996, the hospital invited me to come and examine the patient. I saw her at 4:00 P.M. She was very thin and had a steady fever of between 39 and 40 degrees Celsius. Her oral cavity had begun to ulcerate. Her abdomen was distended. Dark purple colored stripes had appeared on her skin. The color did not go away when pressure was applied. I did a full physical examination. The results of chemical tests of water samples of the water in her abdomen and chest came back “No cancerous cells detected”. What kind of sickness did she
have? The purple stripes made me think of Karposi’s Sarcoma. Could this person have AIDS? A blood sample test turned up HIV antibodies proving that the patient was in fact infected with HIV. Ten days later Ms. Ba died. She was only 42. More than a year earlier, she had been given a transfusion of contaminated blood when she had been operated on for a uterine tumor. Fortunately, her husband and children had not been infected with HIV. Ms. Ba was the first AIDS patient I ever saw.
I was astonished to find that the contaminated blood had come from a blood bank. If blood bank has been contaminated with HIV, there certainly must be more than just one victim! This could only be the tip of the iceberg that appears above the water’s surface, I reflected as the thought pierced my heart. “We only live once”. How many innocent lives will the pitiless spread of demon AIDS sweep away? There is today still no vaccine for HIV and no medicine that can cure it. All we can do is to stop its transmission and spread. The very fact that during the nearly two years between Ms. Ba’s infection and her death that HIV did not spread to her husband and children demonstrates that HIV/AIDS prevention is not difficult. We need to understand how to prevent it by arming ourselves with knowledge about HIV and an awareness of the urgency of HIV prevention.

I heard that after Ms. Ba died, her husband slept before her tomb for over ten days. He regretted bitterly that he had asked for a blood transfusion for his wife. This makes me sad. In our HIV/AIDS education we have stressed modes of HIV transmission such as sexual transmission, prostitutes and prostitution, extramarital sex, intravenous drug users but have very rarely talked about the “blood disaster” of the transmission of blood through medical care.

In Fall 1996 I began writing and printing AIDS prevention materials at my own expense. I had very little money then, only 500 RMB (USD 60) together with another 800 RMB from the Henan Museum of Culture and History and 400 RMB from the Song Qingling Foundation. With this 1700 RMB 12 thousand copies were printed. On December 1, 1996 — International AIDS Day — a car left the Museum of Culture and History with the materials. Together with colleagues, we distributed 800 of the educational materials over three days to people at Zhengzhou’s five long distance bus stations.

The next year, we learned that there were even more people in the countryside than in the cities who had HIV. “Secrecy” however, made it hard for us to get in touch with them. This situation further stirred up my courage and determination to persevere in HIV education work. I will continue to write, to edit, to print, and to speak out! I will use many different ways to give the people the knowledge they need to prevent HIV. We edited the materials twice each year and printed them on octavo-size paper. We have already done eight printings and have printed 300,000 copies in all. Except for the first printing, each printing costs between 3000 and 5000 RMB. I have earned this money mostly from a busy schedule of teaching classes and writing articles.

These past few years we have distributed our “AIDS prevention materials” in many ways. The most important distribution route was donating the materials to the Henan Province Epidemic Station which then sent them to medical worker at every level and to the families of people who have HIV. We also, with the help of acquaintances at the bus stations and aboard train distributed the materials to the public. Some family planning stations were also distribution points. Some newspapers and magazines also helped with distribution and confirmed that the materials had actually reached the peasants. When some acquaintances came to see me for an illness, I also asked them to bring back these materials to their village and give them out. Another method were notices that some newspapers and magazines ran inviting people to write and ask for the materials. Each year I gave 30 – 70 public lectures on “Staying Healthy”. From 1996 onwards, we added HIV prevention information to these lectures and gave them out the AIDS prevention materials to people who attended the lectures. Many people said, “Dr. Gao has become obsessed with spreading information on how to prevent HIV”.

2. The Frustrations of AIDS Prevention Education Work

The number of people who ask me for AIDS prevention educational materials has grown steadily over the past five years. Over the past year or so I have received over 3000 letters and ten times as many telephone calls. Except for the swindlers among them, I feel obligated to respond to every letter I receive. Everything seems to be going well. In fact, it isn’t. For example the time Teacher Ding and myself went to a night club to give AIDS prevention materials to the bar girls there. The women hid themselves as if a terrible monster had come.

Some of the braver women took a look at the materials. When they saw that it was about AIDS, they threw it into the trashcan saying, “Old lady, get out of here! Get out! If the customers see this no one will dare come here. They’d certainly assume we must all have HIV!” The manager of the nightclub stormed in. Acting as if he was confronting his enemy, he kicked us out of the nightclub. This happens quite often. If it isn’t an entertainment spot, it is a government office, a factory or a business. There are few exceptions. There is some misunderstanding involved. Most of them think: I don’t visit prostitutes and I don’t sell sex so I can’t possibly get HIV. What is even more troubling is that they equate AIDS with promiscuous sexual behavior. They say that AIDS is an immoral disease that good people don’t get. They even go so far as to say that “AIDS prevention” educational materials are shameful. Thus, in AIDS prevention educational work we have encountered many scornful looks and cold responses. This of course is even more so when people
meet others afflicted with HIV. When people see them on the street, they run away. Some run away very quickly, some even stumble all over themselves in the effort to make a fast escape. Their neighbors don’t dare to speak with them, much less pay them a visit at home. Sometimes they just move away. When a person with AIDS dies, nobody dares to carry the coffin. Just mentioning the word “AIDS” makes them go pale.

The upshot of all this is that I write, edit, and print a book about AIDS and give it to people but they are too embarrassed to read it. Over the last few years I have also put AIDS information into gynecology texts. This method seems more effective and has not met with resistance. But printing costs are high and I can’t afford to do it on my own. Self-financed AIDS prevention educational work is very difficult and frustrating.

3. After I Encountered People Living With AIDS

Ever since August 1999, I have been interviewed frequently in the mass media. As a result I have received many letters and telephone calls that made me realize that the AIDS epidemic in some counties, rural districts and villages is extremely serious. In November 1999, a journalist named Wang looked into the AIDS situation and discovered that it was even worse than what I had heard. The main problem was the transmission of HIV through the blood supply. When Professor Gui of Hubei University went to a certain village and took blood samples of 155 peasants who had sold blood, he found that 96 of them were HIV positive. That result astonished me.

In November 1999, I got in touch with 12 people with AIDS. Eight of them had gotten AIDS as the result of selling blood, three as a result of getting a blood transfusion and one bar girl who however had sold blood. Just before the Spring Festival 2001 I sent each of them 100 RMB . Two weeks later I got back 400 RMB with a note from the post office stating that “the recipient of the funds has died. ”

On March 18, 2000 I went to a certain village to see people living with AIDS. I gave them some medicine. The peasants lined up and waited for me to examine them and to give out the medicine. One of them, a middle aged man named Mr. Cheng said, “How much money do you want, doctor? Sell me some medicine. I have been sick for nearly a year.” He held a few cents in his hand. I answered, “I don’t want money.” I gave him one hundred pills of medicine that would bring down his fever and for his stomach. He said, “Did Chairman Mao send you? ” The 300 RMB (USD 37) worth of medicine I had brought along was soon exhausted. I returned home with over 30 photographs that documented my visit.

After that, someone from that village called me up asking for medicine. On July 8, he came and took back with him 400 RMB worth of medicine to the village. But he kept two thirds of it for himself. It is said that his cousin runs a pharmacy and wanted to sell the better medicine himself. This made me very sad. I became determined that after that I would go to the villages myself to give out medicine so that a dishonest person would not deceive me again.

On September 12, during the Autumn Festival, I rented a car and took along eight pounds of moon cakes and four bottles of almond dew drinks, two bottles of fresh milk, milk powder, and tea (to give to my helpers). I brought along 500 RMB worth of medicine (360 RMB thanks to a contribution from Yang Fangrong Vice director of Women’s Life magazine) and went to the village. The people living with AIDS were very friendly. Ms. Wu was very kind. I took several photographs of his son Cheng X. She took the medicine and said, “I thank the Communist Party and thank Chairman Mao”.

A letter came from a Mr. Kong, discussing the seriousness of the HIV epidemic in the villages surrounding his own. The peasants in that area have a deep hatred for the “blood heads”. Later I visited that village on October 31 for the third time. I took along several thousand copies of the “AIDS Prevention” educational materials, over 2000 books and 600 RMB worth of medicine. The village people were very happy to see me. When I asked about people sick with AIDS, they told me that a Mr. Wu and Mr. Kong had already been carried off by the AIDS demon. I took that opportunity to teach them about the various ways that HIV can be transmitted and medical information about being in contact with people who are infected with HIV. During this visit I went to five villages. The situation in the other four villages was even more serious than in the original village. There were many people who had seen their entire family die of AIDS.

During my long survey trips and during my travels to visit people living with AIDS, I suffered many hardships. On March 29, 2001 at 5 AM I set out from the Zhengzhou train station. At 10 AM I reached Zhumadian and switched to a long distance bus for the trip to Shangcai. Because I needed to change from train to bus, I didn’t get to Shangcai until 8 PM that evening, having spent over nine hours on the road. This was very tiring on my seventy-year-old plus body. I was able to take a drink either. The bus was very crowded and so my two young companions stuck their heads out the window from time to time to get some air but I stayed crammed inside the compartment. When we reached our destination, I found that I could not walk. My legs were so painful that I could barely get up. It has already been a few days, but I am not over my feelings about that experience yet.

4. Many Different Kinds of Pressure and Obstacles

AIDS is today a worldwide epidemic. Most Chinese who have HIV live in China’s villages. Most of the farmers dying of HIV are too poor to afford medical care. Even less do they have any idea about how to prevent HIV infection. To the day they die they don’t know what kind of illness they have. In the villages of the Zhumadian district, the people call AIDS the “strange disease”. In the Zhoukou area they call it the “nameless fever” ( since people with AIDS run a fever).

I used my own money to make an “AIDS prevention” educational campaign, to give medicine to the sick, to send money. Over they years I have spent over 100,000 RMB (USD 12,000) doing this. What kind of place do I live in? Anyone can see it for himself or herself. It is an old apartment with not one piece of decent furniture. My husband and myself are over 70 years of age. We don’t have any heating in the winter. I live in these conditions but spent over 100,000 RMB on working with people living with AIDS in many areas. Many people don’t understand me. They say that I am wasting my time.

I certainly know that I am just flipping spoonfulls of water onto a roaring fire. What I really hope I am doing is moving people with conscience will sympathize with people living with AIDS, will treat them well. The orphans, especially, need help.

Much opposition and many obstacles have made things things work out badly. Here are a few examples.

On December 1, 1999 Zhengzhou City television invited me to do a live TV program on “Preventing AIDS”. A certain leader looked for me four times in the course of one afternoon. I went at 4 PM. She had a good attitude and said the right things. She said, “AIDS is not the “nameless illness”. The experts at the Henan Department of Health say that there has not been even one case of AIDS in Henan Province.” Just at that moment I had a slip of paper in my pocket with the names and addresses of 12 AIDS patients written on it.

In 1999, I was declared a model person concerned with the next generation by the Ministry of Education. I don’t know what the reason was, but I was not allowed to go to Beijing to receive the award. My work unit did not arrange for an award ceremony. I only got a certificate and a plaque. When I looked into the reason, it turned out that they were afraid that I would talk with China’s leaders about the AIDS situation in Henan Province.

On March 18, 2000, the leadership of my work unit confiscated some photographs that I had taken of people living with AIDS when I gave them some medicine.

In mid August 2000, China Newsweekly interviewed me in connection with an article about HIV/AIDS in Henan Province. The article was detailed and accurate. Many other publications reprinted the article. Some leaders accused me of improperly giving journalists information about the HIV/AIDS epidemic and so hurting Henan Province’s public image. They ordered me not to talk with journalists ever again.

On November 9, I went to give a lecture than had been arranged two weeks earlier. That party secretary asked me, “What will you talk about with the students this afternoon?” “Some information about how to protect their health.” She said, Will you talk about AIDS?” I said, “Yes, I’ll talk it but not much.” At that moment, a journalist name Wang from Chinese Central Television was with me. Two hours later the lecture was cancelled with explanation. Wang and some other comrades who had come to do some filming for a television program were made to stop their work without any explanation.

On the evening of November 15, that party secretary told me that I was never again to see any journalist. She said I may not do any more lectures about AIDS. If too much were said about it, who ever would come to Henan Province to invest?

Some people told me that there was a wiretap on my home phone. I did not confirm this, I just knew that the leaders of the work unit asked people who had been in contact with me, “Are you the one who told Gao Yaojie about the AIDS epidemic in Henan?” This questions scared people so much that they didn’t dare come to see me again.

On the evening of November 19, a director from a certain section of the Henan Province Department of Health came to see me. He said, “If you see anyone from the Department of Health, don’t tell them that I came. I told him about the seriousness of the AIDS epidemic. He shook his head saying, “I don’t dare, I don’t dare say anything…” I said, ” I gave many AIDS prevention educational materials that I had printed at my own expense to the Henan Epidemic Prevention Station for further distribution.” The section director said, “Does Wang Zhi (the deputy leader of the Epidemic Prevention Station) dare have anything to do with you?” It seems that I have truly become an “AIDS epidemic prevention goddess”. For more details, see the web report Revealing the Blood Wound of the Spread of AIDS in Henan Province .

[Translator’s note: “The Blood Wound” is available in English translation at

 http://museums.cnd.org/CND-Global/CND-Global.01-01-25.html

The original Chinese text of “The Blood Wound” is available at http://www.aizhi.org/jkwz/bloodwound.txt ]

5. What Can We Do Now?

Since last Fall, I have been doing some surveys of AIDS prevention knowledge. Out of over 10,000 people, fewer than 15 percent can correctly identify the modes of HIV transmission and know how to protect themselves from HIV. Very few people know that HIV can spread through blood. For the sake of doing a more effective job in “AIDS Prevention” education, I have written a specialized book of over 100,000 words, and I am getting ready to print 50,000 to 100,000 copies. I am now collecting funds. When I get enough money I will begin printing it. Once the book is printed, news of the book will spread to the people through the news media. Medical workers, patients and their families in the villages will be given the book free of charge in order to help these men and women understand better how to prevent HIV and so prevent HIV from spreading still further.

Just before the Spring Festival, I received a letter from an elementary school student. She wrote, “My mother sold her blood for the sake of my younger brother and myself and she got AIDS. Now she is very sick. What can I do without my mother…?” This made me reflect, what of the children who have become AIDS orphans because AIDS made of with the lives of their parents? How will those children go on? How can these orphans, especially orphans who have become infected with HIV, be helped? Because there are many misunderstandings about HIV, that this has happened because of the sin of the parents of the child. Therefore they are unwilling to open their purse to help them. Doubly burdened by poverty and illness, they look out on the world with eyes open wide,
awaiting death.

In early January, I went to Beijing to take part in a conference at Qinghua University “Seminar on Sexually transmitted diseases and AIDS”. Some experts raised the issue of AIDS orphans at the conference. After Spring Festival, I got to work investigating AIDS orphans. Between March 19 to April 7, I made four visits to several counties that are administratively under Kaifeng. I went once to county A, once to county B, and discovered that AIDS in county C was worse than in counties A and B but that the cover-up job was done much more thoroughly in county C. We encountered officials who expelled us from counties and epidemiological stations that drive out outsiders. No matter which one of the seven villages I visited in county C, there were always 10 or more people with AIDS. I also ran into a new problem. There some “physicians” see in AIDS patients a chance to make a fortune. For example, one village medical worker named Chen gave patients amikacin to bring down fevers. This made the patients dripping wet as they sweat profusely and hastened their deaths. Most of the people who had died of AIDS were young people. Behind every death from AIDS there are one to three orphans. There are already some small children who have no one to care for him or her. In a small village of Gulu township, XX county B, lives the ten-year-old child Gao, whose mother has already died. His
14-year-old older sister had to drop out of school.

At the East Lake Elementary School in Gulu township, there are nearly twenty AIDS orphans. No one has counted how many orphans who are not in school. I saw two little girls. The elder sister was ten years old, the younger sister was five years old. Since both their parents died, they lived together with their uncle and his wife. Their aunt and uncle have two children of their own. The aunt and uncle now also have AIDS.

With all this in mind, I recently sent 2000 RMB to the orphans. I sent one thousand to the principal of the East Lake Elementary school, asking that the money be used to help school dropouts return to school. But of what use can that be? I can only do more investigations, take more pictures of orphans, and call on all on people of conscience in all sectors of society to reach out a hand to help the orphans. Thank you everyone. Thank you to all the women and men who think of the orphans and help them.

With respect from Gao Yaojie
May 1, 2001
——————————————————————————————-

Dr. Gao was the 2001 winner of the Global Health Council’s Jonathan Mann Award for Global Health and Human Rights. See the award notice at GHC | The 2001 Award Recipients at http://www.globalhealth.org/awards/2001award_recipients.php3

References

Wiki bio Gao Yaojie   http://en.wikipedia.org/wiki/Gao_Yaojie

“Breaking the Silence within the Great Wall of AIDS” Dr. Gao’s speech accepting the Jonathan Mann Award (delivered in absentia) in Chinese at
http://www.globalhealth.org/publications/article.php3?id=415

Breaking the Silence Inside the AIDS Great Wall

The following speech was presented by Dr. Gao Yaojie at the Global Health Council’s Annual Awards Dinner in Washington, DC. Dr. Gao is the 2001 recipient of the Jonathan Mann Award for Global Health & Human Rights.

Ladies and Gentlemen, Brothers and Sisters:

I am Gao Yaojie, a retired gynecologist in Henan Province, China. I am most honored and excited to receive The Jonathan Mann Award for Global Health & Human Rights. Thanks to the Jonathan Mann Award committee for their favor and encouragement of my work in fighting against AIDS. And allow me to express my cordial greetings to Mann’s family.
When Dr. Jonathan Mann first organized the Global AIDS Program at the World Health Organization in 1988, our country was setting up a Great Wall for AIDS to prevent the disease. That was the same question that Dr. Jonathan Mann asked when he met China’s health leaders and professionals in late 1980’s: Will China set up another Great Wall for AIDS?
The strategy of a wall to keep the disease outside the country is quite naive, yet our country started to ban imports of blood products and screen international travelers across our borders since 1980. However, blood donation in China was not carefully selected and screened for a long time.

I began to realize the epidemic of AIDS in my province in 1996 when I started my education and advocacy for AIDS prevention, treatment and care. A patient of mine died of AIDS that year. The woman got a blood transfusion in the an operation 2 years before and became infected. The fact that the blood came from a blood bank shocked me: our blood is not safe. How many people may have been infected?

In November 1999, Dr Gui Xi-en, an epidemiologist, tested 155 blood sellers of a village in Henan province and found 96 people infected with HIV. The incidence was as high as 60 percent.

As a doctor and former people’s representative, I have the responsibility to tell people: Act Up, Stop AIDS! Our Blood Is Not Safe. With the help of my friends, I utilized personal resources and printed newsletters and pamphlets. We distributed the educational materials in schools, women’s groups, villages, train station and bars. And we successfully involved the local, national and international media. On World AIDS Day, the day created by Dr. Jonathan Mann and his colleagues, we would organize some activities to raise the awareness of the public on the AIDS epidemic and towards caring about people with the disease.

Our action is based on the epidemic of the disease in our communities. But our action is also a part of the Global AIDS Program. Without Dr. Jonathan Mann and the global action against AIDS, we might not have realized the seriousness of the disaster we are facing until we suffered further.

However, we have been late. Many people have died of AIDS and many orphans left without care and education. I hope the global health communities pay more attention to the orphans in Henan province of China.

Unfortunately, some local officers still try to ignore the fact that AIDS is spreading quickly in our province, especially through blood selling. Our AIDS Great Wall can’t work now, but the Political Great Wall works. Some officers criticized me as being utilized by the International Anti-China Forces. That is why I can’t get a passport and represent myself at this banquet. I know some other people working against AIDS was criticized as being utilized by the International Anti-China Forces and were discriminated, fired and not allowed to speak openly.

I want to say AIDS is a global problem we are facing. It is a problem transcending different countries, races, political systems and ideologies.

We need to unite all the forces and resources that we can to fight against the challenge of AIDS towards our province, our country and the global village. If Dr. Jonathan Mann were here tonight, we could share the same ideas.

The UNAIDS – Beijjing website is at http://www.unchina.org/unaids/eus.html

Recent Reports (2001) on HIV/AIDS and STDs in China from Chinese medical journals and press in english at http://replay.web.archive.org/20011007052535/http://www.usembassy-china.org.cn/english/sandt/hivartic.html

——————

Gao Yaojie, Henan AIDS campaigner, tells the story of her work on AIDS
in "My AIDS Prevention Journey" in Chinese on the aizhi.org
(http://www.aizhi.org) website at the
address above.  Gao discusses
seeing her first AIDS patient in 1996, her early writing of AIDS public
education literature, distribution around Zhengzhou and then deeper into
the countryside, the news in 1999 that the spread of AIDS through blood
donation and blood transfusions was much worse than she had thought (she
recommends the "Blood Wound" available in English translation
at http://museums.cnd.org/CND-Global/CND-Global.01-01-25.html and its
account in some detail of Dr. Gao's AIDS prevention work) .

Dr. Gao also discusses harassment by the Henan authorities.   Dr. Gao
estimates from her own experience that only about 15 percent of the
people in Henan know how to protect themselves from HIV and nearly
nobody knows about the spread of HIV through the blood supply there.
Her plans?  Dr. Gao wrote a book about HIV for the public and is about
to print 50,000 copies. Dr. Gao is especially concerned about the
rapidly growing number of HIV/AIDS orphans.  In  March and April and
March 2001, Dr. Gao traveled to the countryside to learn about AIDS
orphans.  Dr. Gao visited two counties (not named) that have much HIV
and is being covered up by local officials.  Dr. Gao was alarmed to see
that the local "physicians" see HIV/AIDS as a opportunity to make a lot
of money.  Most of the dying are young people who leave behind two or
three small children.  With their parents dead and dying, who will care
for them?  One of the elementary schools already has 20 AIDS orphans,
but who could ever make a complete count?  Dr. Gao said that she will
continue learning about the AIDS orphans, taking many pictures, in an
effort to arouse society to care for them.

Breaking the Silence of HIV/AIDS is the text of Gao Yaojie's speech
accepting the Jonathan Mann Award. She was unable to attend the ceremony
because the Henan Province health authorities blocked the issuance of
her Chinese passport.
http://www.aizhi.org/azxd/gaospeech.htm
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