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Compassionate determination

April 22, 2001

One woman’s struggle to help the victims of Henan’s HIV epidemic

 

In 1996, Gao Yaojie, a retired gynecologist, was called in to look at Ms. Ba, a patient in a Zhengzhou hospital whose illness other doctors had been unable to diagnose. Ms. Ba had a fever of 39-40 degrees Celsius, her abdomen was distended and she had dark purple markings on her skin. After running some tests, Dr. Gao discovered that the 42-year-old woman had AIDS, and that she had contracted the disease from a blood transfusion during a previous operation. Ten days later, Ms. Ba died.

Ms. Ba was the first AIDS patient that Dr. Gao encountered. Reflecting on this case, Dr. Gao wrote: “If a 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… How many innocent lives will the pitiless spread of demon AIDS sweep away?” Soon after diagnosing Ms. Ba, Dr. Gao made it her full time mission to educate people in China about AIDS prevention.

Since 1996, Dr. Gao has focused her work in the Henan countryside, where poor farmers, uninformed about the risk of AIDS, sell their blood to earn desperately needed cash. In this process, blood is collected from donors and pooled together so plasma can be extracted and sold to pharmaceutical companies. The mixed blood is then transfused back to the donors.

The practice of selling blood was outlawed with the 1998 Blood Donation Law, but is still widespread. Wang Zhi, of the Henan Epidemic Prevention Station and AIDS Center, has admitted that at least 100,000 people in Henan illegally sell blood. Dr. Gao estimates the number to be closer to one million. Activist Wan Yanhai has pointed out that, according to estimates of hepatitis infections from blood donations, the total number of people in Henan infected with HIV through illegal blood donations may be as high as 300,000. Furthermore, combined with cases of HIV contracted through sexual contact, intravenous drug use and other means, the total number of infected people in Henan Province alone may be greater than the government’s nationwide estimate of 600,000 infections. In one village in Henan, 65 percent of AIDS tests came back positive.

Despite this evidence, government authorities have done little to help find a solution. Health Minister Zhang Wenkang says about 70 percent of cases of HIV infection nationwide are contracted through intravenous drug use, with the rest transmitted through sexual contact or from mother to child. When asked what preventative measures China would take to combat AIDS, Zhang stated that his department would encourage people to “develop a healthy lifestyle, without so many sex partners and secondly without drug using.” He made no mention of preventing transmission of the virus through blood transfusions.

Local authorities are wary of bringing negative attention to their areas by revealing the true extent of the crisis. As Dr. Gao began to gain recognition for her work, threats and intimidation started. On December 1, 1999, World AIDS Day, Gao was warned by local health officials that when interviewed by the media, she should say that there were no AIDS cases in Henan. Recently, Dr. Gao was awarded the Jonathan Mann Award for Global Health and Human Rights. But she was barred from attending the awards ceremony after being denied a passport by her former work unit and accused of working with “anti-China forces.”

After issuing an investigative report on her findings to the central and provincial governments and various media, Gao began to receive threatening phone calls, warning her that if she continued with her work, her life was at risk. She responded with characteristic determination. “I’m already so old,” she told Southern Weekend. “If my death can make more people concerned, then I’m willing to die.”

Sophie Beach

 

 

 

 

 


 

 

 

 

 

 

MY “AIDS PREVENTION” JOURNEY
Dr. Gao Yaojie

 

I met my first AIDS patient, a woman who had received an 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 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.

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… We need to understand how to prevent it by arming ourselves with knowledge about HIV and an awareness of the urgency of HIV prevention… 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 the fall of 1996 I began writing and printing AIDS prevention materials at my own expense. I had very little money then, only 500 yuan together with another 800 yuan from the Henan Museum of Culture and History and 400 yuan from the Song Qingling Foundation. With this 1,700 yuan 12,000 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 copies 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.... We have already done eight printings of 300,000 copies in all. Except for the first printing, each printing costs between 3,000 and 5,000 yuan. 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 workers 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 trains, 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 farmers. 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 to 70 public lectures on “Staying Healthy.” From 1996 onward, we added HIV prevention information to these lectures and gave 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.”

 

 

 

 

 

 

FRUSTRATIONS OF AIDS PREVENTION 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 3,000 letters and 10 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 trash can 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 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.

 

 

 

 

 

 

ENCOUNTERING 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 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 yuan. Two weeks later I got back 400 yuan with a note from the post office stating that “the recipient of the funds has died.”

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” materials, over 2,000 books and 600 yuan 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 5:00am I set out from the Zhengzhou train station.... I didn’t get to Shangcai until 8:00pm that evening, having spent over nine hours on the road. This was very tiring on my septuagenarian plus body....

 

 

 

 

 

 

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. They have even less 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 yuan 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.... Many people don’t understand me. They say that I am wasting my time.

I certainly know that I am just pouring spoonfuls of water into a roaring fire. What I really hope I can do is to move people of conscience to sympathize with people living with AIDS, and treat them well....

Much opposition and many obstacles have created a host of problems. Here are a few examples:

 

 

 

 

  • In 1999, the Ministry of Education gave me an award as a model for concern for the next generation. I don’t know why, but I was not allowed to go to Beijing to receive the award. My work unit did not arrange for an award ceremony.... I later found 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 that had been arranged two weeks earlier. The 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 about it, but not much.” Two hours later the lecture was cancelled without explanation.
     
  • On the evening of November 15, the same Party secretary told me that I was never again to meet any journalist. She said I was not allowed to give 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 was not able to confirm this, but 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?” Such questions scared people so much that they didn’t dare come to see me again.

 

 

WHAT’S TO BE DONE?

 

Since last fall, I have been doing surveys of AIDS prevention knowledge. Out of over 10,000 people, fewer than 15 percent could correctly identify the modes of HIV transmission and knew how to protect themselves from HIV. Very few people know that HIV can spread through blood. In order to do a more effective job in AIDS prevention education, I have written a book on the topic.... and I am preparing to print 50,000 to 100,000 copies. I am now collecting funds for this.... 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 further spread.

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 took the lives of their parents? How will those children survive? How can these orphans, especially orphans who have become infected with HIV, be helped? 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.

After the Spring Festival, I got to work investigating AIDS orphans. Between March 19 to April 7, I made four visits to several counties under the administration of 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 drove out outsiders.... 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 them. In a small village of Gulu township, X county B, lives the 10-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 20 AIDS orphans. No one has counted how many orphans are not in school. I saw two little girls. The elder sister was ten years old, the younger sister was five. Since both their parents died, they went to live 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 2,000 yuan to the orphans. I sent 1,000 yuan to the principal of the East Lake Elementary school, asking that the money be used to help dropouts return to school. But how much use can that be? I can only do more investigations, take more pictures of orphans and call on all people of conscience in all sectors of society to reach out a hand to help the orphans.... Thank you to all the women and men who think of the orphans and help them.

With respect, from Gao Yaojie, May 1, 2001

Further information

 

 

 

 

Translation of Gao Yaojie’s article by David Cowhig.

 

 

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