My "AIDS Prevention" Journey

By Dr. Gao Yaojie

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

Dr. Gao Yaojie - 2001

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 Kaposi'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 on the U.S. Embassy website at http://www.usembassy-china.org.cn/english/sandt/henan-hiv.htm   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

[Chinese original is available on the Aizhi website at Gao Yaojie -- AIDS Prevention Journey  http://www.aizhi.org/jkwz/journey.htm ]

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