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In Rural China, a Steep Price of Poverty: Dying
of AIDS
By: Elisabeth Rosenthal
The New York Times, October 28, 2000
To celebrate the Moon Festival last month, a frail retired doctor named Gao Yaojie scraped together money to hire a taxi, packed it full of medicines, brochures, sweet drinks and cakes — and slipped off, once again, from this provincial capital to see patients in remote mud-brick villages where countless farmers are silently dying of AIDS.
Chinese officials here generally deny there is AIDS in rural parts of Henan Province, a farming region in central China south of Beijing. They have forbidden the local news media and government health workers to discuss the topic and blocked outside researchers from studying it. Dr.
Gao, a small serious woman of 76 in dark hand-me-down clothes, is regularly chased out of the villages she goes to help.
But Dr. Gao and a few others familiar with the area say small towns here and scattered elsewhere in central China are experiencing an unreported, unrecognized AIDS epidemic. A few covert studies suggest some of the towns have some of the highest localized rates of
H.I.V. infection in the world; some say 20 percent.
The problem is that for many years large numbers of poor farmers have illegally sold their blood to people known as blood heads, whose unsterile collection methods have left many infected with the virus that causes AIDS. The blood donors get the virus not only because blood heads reuse contaminated needles but also because donated blood is often pooled and, after the desired elements are removed, the remainder divided and returned to donors.
So blood-borne diseases spread rapidly among the blood sellers — who have now passed the AIDS virus to their spouses and children, and also to patients who get transfusions made from the blood.
And while the Chinese government has acknowledged AIDS outbreaks in its western provinces and cities (caused mostly by drug use), discussion of this outbreak remains taboo. "This is a minefield, an extremely sensitive issue that is going to be a big problem for China," said one Western AIDS expert who has worked extensively in Asia.
Against this backdrop of hostility and denial, the stubborn Dr. Gao is waging a lonely campaign to publicize the issue, educating the healthy and treating the sick in villages where many people have only a primary school education. She tries to discourage women from selling their blood, hands out medicine to control the diarrhea associated with AIDS and cuddles infected infants to show neighbors that there is nothing to fear. Her medicines, like pain killers and cough syrup, cannot cure patients, only ease their suffering.
"No hospitals here take these patients," she said. "Their families turn them out. There's no option — just to die. Many people think AIDS is a bad disease, so they don't talk about it and don't admit they have it." She said people are often so ignorant about the disease that they continue to sell their blood even after watching dozens of fellow villagers die, thinking that if they eat right and dress warmly, they cannot fall ill.
One concerned local official said that widows and widowers of AIDS patients — many of whom were themselves infected — often quickly remarried. "They are continuing to spread the virus," he said. "When will this tragedy end?"
Because provincial officials have blocked efforts by government scientists to survey these areas, there is no clear idea of the magnitude of the problem, only disturbing hints.
Working without permission, Dr. Gui Xien, a researcher from neighboring Hubei Province, drew 155 blood samples from farmers in Shangcai County in
Henan, where blood selling is common; 96 of them were H.I.V. positive, including blood sellers, their spouses and children, according to another doctor familiar with the study.
Although it was not a random sample, the 62 percent infection rate was alarming. "These villages should have a rate of zero," said the Western researcher. "Even 20 percent indicates a very serious problem." He said the statistics trickling out of the countryside presented a "classic picture of a blood-associated epidemic," because rates of other blood- borne infectious diseases, particularly hepatitis C, were also very high.
In Shangcai County, more than a dozen families in one village of 2,000 people included individuals who had died from AIDS — and rates are similar in all the surrounding villages, a local cadre told a small Beijing magazine called China News Weekly, one of the few publications to broach the subject.
When an infectious-disease specialist from Beijing made an undercover tour of hospitals in rural Henan this year, he saw many patients who appeared to have AIDS. When his identity was discovered, he was thrown out of the province and faced a reprimand.
"Lots of people at the center are really good and know what needs to be done," said a Western diplomat who was told by health officials in Shangcai that there was no AIDS there. But those officials are ineffective, he said, because "they depend on the provincial health folks who nominally work for then, but in reality don't."
In some of the most affected areas, a few local officials and medics have tried to help the ill with donations and improvised education campaigns. But with no support from higher levels of government, little money and limited knowledge, they are often ineffective.
"You run into many obstacles doing this kind of work, both from higher officials and from townspeople, who don't understand the disease," said a local official, a Mr. Kong, who spoke by phone from one of the affected villages. Then he asked, "Tell me, is there a cure for this sickness?"
The illegal blood trade thrives in China because of perpetual blood shortages at hospitals and at companies that make medicines derived from blood: most Chinese are unwilling to donate blood. In rural
Henan, most donors are women because people here argue that men's blood is too precious to waste, and women lose blood to menstruation anyway.
In an unpublished article circulated to call attention to the trade, a local official named Du described this scene: "Villagers became crazy about selling blood because they are so poor and life is so hard. Many had built their houses by selling blood. Some will even bribe traffickers to be able to sell more than once a day. Once we saw hundreds of people lined up there at the entrance of our village. I thought it must be a vegetable market or a movie. It turned out to be blood selling! I felt so terrified because there is no sterilized equipment at all. Villagers just tell the traffickers their blood type and then lie down on the ground to offer blood."
The practice has decreased since blood selling was made a criminal offense several years ago, but experts say it continues and black market blood is still used by hospitals and by drug manufacturers for making things like gamma globulin and clotting factors. It is a huge business, Dr. Gao said, blaming corrupt hospital officials.
It is unclear how much of the tainted blood makes it into the hospitals, where theoretically it is tested for the virus that causes AIDS. The United States government says that Chinese blood products are not sold in the United States.
Dr. Gao, formerly one of the province's leading gynecologists, was drawn into AIDS work in 1996, when she was called out of retirement to consult with younger doctors about a woman whose illness confounded them. Dr. Gao concluded that the woman had AIDS, making the patient the first official casualty of the disease in the province.
Since then, Dr. Gao has transformed the spartan unheated flat she shares with her husband into a command center, using her pension money to print educational leaflets and conduct simple surveys as well as answering thousands of letters from teachers, patients needing money, even other doctors wanting information.
While local officials at first tolerated her campaign, they quickly became annoyed by her blunt talk and harsh words. She says, for example, that if the government does not confront AIDS, more people will die than during the Japanese occupation.
"Yes, they've threatened me," she said. "Even my friends don't understand me; they think I should enjoy my retirement. But people are dying. And this is something that can be totally stopped."
With tears in her eyes, Dr. Gao told how on a recent trip, she visited a mother and son, both near death. The mother, Wu Long, a veteran blood seller, had a painful rash that covered her body and could not eat because of the sores in her mouth. Wei
Wei, her 2-year-old son, had been sick since birth with fevers, vomiting and diarrhea. His grandfather described him as gaunt "as a child from Africa." The father tried to commit suicide when he learned the child had AIDS.
To such people, Dr. Gao, with her small gifts of love, medicine and knowledge, seems the Chinese equivalent of a saint. One AIDS victim named Cheng
Yan, who has since died, wrote to her, "It must be Chairman Mao who sent you here."
Dr. Gao said that the local press does not print articles about the problem in
Henan, and that the situation is generally ignored or covered up by local authorities, who fear it will reflect badly on their work or interfere with plans for business development.
"Big officials tell small officials to deny it's here, and so people don't get help," she said.
In Shangcai County, the medical examinations that are required for all Chinese citizens before marriage still do not include AIDS testing or counseling, for example, said Dr.
Gui, the researcher from Wuhan, at a medical lecture this year. More than half of hospitalized patients who test positive for
H.I.V. are not informed of the test results, he said.
And Dr. Gui added that he was rebuffed when he approached health officials in Henan to begin an AIDS prevention program, offering to act as a free adviser. Chinese officials have made him promise not to publish the specific results of his survey.
"The gravity of AIDS in Shangcai has not attracted the concern of the relevant authorities," Dr. Gui said. "And this is something I'm broken- hearted about."
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