Her creaky, desperate voice leaped out of the shadows beyond the doorless doorway. “Are you a doctor?” she asked me in Chinese. “We don’t feel good.”
“No, Kong Lin,” my friend answered on my behalf. “But he is here for you. We must come in now, please.”
Kong Lin, now standing in the dim light that showed her torn teal dress and bare feet, recognized this voice. “Zeng Hao,” she said, rasping, and reached her hand out for his. “Come in. But I have no tea or water tonight.”
I followed Zeng Hao, bumping my head on the top of the wooden door frame as I entered a home that included a tiny kitchen and a sleeping area the size of a hospital supply closet. A pile of soupy diarrhea sat in a plastic bowl on the floor near the bed Kong Lin shares with her husband.
She apologized for the stench, and then said with a shrug, “We must go somewhere, and we are too weak to make it to the toilet.” Her home didn’t have one, for in a rural central China village like this, the W.C. is down the dirt path. Shared by hundreds of neighbors, it requires squatting instead of sitting and reeks much more than her diarrhea bucket.
Zeng Hao took the bowl out to clean it, as he says he does most nights. As we waited for his return, I sat on a wood stool in the tiny bedroom across from Kong Lin and her sleeping husband. Although she says she’s in her 40s, she looks at least 60. Her arms are veiny and bony, her soiled gown hanging flatly over her waiflike body. Her eyes are sunken, but her face still offers a cheerful smile.
Even before this current calamity, Kong’s life had been harsh, a typically hardscrabble existence tending to some postage stamp of assigned land by day and sleeping in her government-issued hovel at night. She and her husband, however, now rely on neighbors to farm because they’re both too weak.
I had wondered how I would know for sure whether these people had AIDS, for no doctor had ever been here to diagnose the infection or offer medications. But the purple lesions sprinkled across his face and the wasting of her body were confirmation enough.
She and her husband suffer “the nameless fever,” she says. They know they are dying.
I had arrived at one of the epicenters of the Chinese AIDS epidemic: Henan Province, the most densely populated province in China. This is the nation’s heartland, a vast plains area where corn, soy, peppers and other crops are harvested on a patchwork of fields around villages overflowing with people. Archeologists have found evidence of settlements in Henan dating back more than 3,800 years, and Henan cities were capitals for two of China’s many dynasties. Today, though, it is a synonym for what ails the country -- with big, ugly cities of white-tile buildings like capital Zhengzhou (population 6 million) that anchor poverty-stricken, low-tech farming regions.
Zhengzhou is where Gao Yaojie, MD, China’s most renowned AIDS activist, lives. She had pleaded with me not to seek out a scene such as the one I’d found in Kong Lin’s home. She’d heard that Public Security Bureau officers were stationed outside the worst-stricken villages, poised to arrest foreigners who attempted to enter. Gao, a 74-year-old retired gynecologist who courageously broke the government’s longstanding AIDS denial and doublespeak to bring this plight to the international media, estimates that more than 20 percent of the people in many of Henan’s villages have HIV.
Despite her warnings, Gao used my yellow highlighter to circle on my map of Henan the counties that contain such villages. When she was done, she’d covered in yellow the vast areas south of Zhengzhou.
I didn’t believe that every village could really be as guarded as Gao said, but the first translator I hired in Zhengzhou wasn’t interested in finding out. As we left Gao’s home, this translator quit, crimping my plan to reach the region.
That night, I visited Zhengzhou University to find a replacement translator, but all the English majors I met were unwilling to take the risk. Tellingly, none of these college-educated men and women had even heard of the Henan AIDS problem -- despite the fact that the story has raged in the Western media for more than a year. Only a few of the students believed the articles I carried with me on the subject.
I gave up. But then, on the way back from reporting an unrelated story in nearby Gongyi City, one of Henan’s fastest-growing industrial centers, I met Zeng Hao on a rickety bus. At first he was sitting in the back, but when he overheared me speak English on my cell phone, he switched seats with the man beside me and began a conversation that immediately focused on why an American would travel these parts. I told him I was a journalist trying to do a story, and that while he wouldn’t believe it, AIDS was hitting Henan hard.
“I am believing you,” Zeng Hao said.
This caught me off-guard. “You are?” I asked.
“Yes”, he said. “This is my village, too.”
Shocked, I pulled out my Henan map. “Where is your village?”
He pointed to one of the many areas Gao had indicated. “I know it is AIDS that many people have,” he said. “Nobody calls it this but me. They don’t know what to call this. And we have no doctor.”
An hour later, Zeng Hao and I got off the bus at the side of an unmarked, unlit road. Although the bus still had an hour to go to Zhengzhou, Zeng and I disembarked here just as Zeng, a 24-year-old migrant worker in Gongyi City, did every day. He led me along dirt paths and between cornfields for about 40 minutes until we came to rows of attached brick houses. Contrary to Gao’s prediction, no officers guarded the village entrance. It was dark.
“This is a good time,” Zeng Hao whispered. “Maybe only a few people will notice you.”
Zeng Hao had decided to have us duck into Kong Lin’s home because it stood at the edge of the village. He also trusted her not to report us, because she was like a second mother to him. Her own son, who was a childhood pal of Zeng Hao, was crushed to death two years ago in one of the routine industrial accidents that take the lives of hundreds of Chinese people each year.
After Zeng Hao returned from washing out the pail, he and Kong Lin talked. I heard the word Meiguoren, meaning American, and the word aizibing, meaning AIDS. She pointed at the Canon camera hanging around my neck. Zeng Hao informed me that she would speak, but only if I put it away and promised not to mention her village by name. I agreed, although we struck a compromise that allowed me to indicate that we were in Henan, south of the Yellow River, one of China’s key east-west arteries. Kong Lin’s village sits about 450 miles south of Beijing and 80 miles southwest of Zhengzhou.
She didn’t pour her heart out to me but revealed through her neighbor’s son, bit by translated bit, an echo of the gruesome tale we’d heard in the Western media for months. She and her husband were very poor, so they welcomed the opportunity in the late ’90s to sell their blood to a “blood head” who came around offering money. The pay seems obscene to Western sensibilities, only about $5 per turn, but this is a society where the average monthly wage is $73.
Blood selling was so regular -- sometimes daily -- that the blood was returned to donors’ veins after the desired plasma and whole blood were skimmed off. Kong Lin’s blood was mixed with that of many others of her type, then injected back into her arms. She began feeling sick around 1999, about a year after the blood selling stopped in her village.
It was impossible to know whether this was one of those villages with astronomical infection rates. Kong Lin said she believed about 500 villagers here had been involved in the scheme before the “blood head” suddenly stopped visiting, stiffing some of the donors of money owed to them.
Dr. Gao is overwhelmed by the extent of HIV in Henan alone. She encountered her first AIDS patient in 1996, a woman named Ba who had a high fever, a distended abdomen and the purple lesions of Kaposi’s sarcoma. Ba, 42, died 10 days later. She had contracted HIV through a blood transfusion during the removal of a uterine tumor, indicating that the blood supply was contaminated. Gao started writing and lecturing around Henan, raising the hackles of provincial authorities who may have been personally involved in the booming business of buying and selling blood to biological research companies and hospitals in major Chinese cities.
By 1999, when the blood-sales stories started to come out in the Western media, Gao was spending her own pension on prevention materials and handing out AIDS drugs in some regions. She says that some of her lectures were canceled and that she was warned to stop talking to reporters. “I’m so old,” she tells me simply, “I don’t have many years to live. So I keep on doing this.”
Now, Gao is under surveillance. She was threatened with arrest for a 1999 interview with The New York Times and barred from traveling to Washington, D.C. to receive the Global Health Council’s Jonathan Mann Award for Global Health and Human Rights.
Still, she continues to speak to journalists and has spent the past year assembling a groundbreaking new Chinese book on AIDS prevention. Her three-room flat is cluttered with hundreds of cubic packages containing the books, about 120,000 of which were printed on $25,000 in donations from the Ford Foundation and individual Westerners. Surprisingly, these books have been authorized by the government and are shipped to Gao’s fellow activists in major cities nationwide.
Only a week before my visit to Gao, the Chinese Ministry of Health stunned the Western media with a blunt press conference acknowledging its AIDS epidemic. This long-overdue truth-telling did not impress Gao. At that August 23 event, Deputy Health Minister Yin Dakui indicated that reported HIV infections in the first half of 2001 were up 67.4 percent from the first half of 2000. Yin even criticized provincial authorities for failing to take action sooner. These disclosures had been preceded by a June speech to the United Nations, at its first-ever General Assembly on AIDS, in which Health Minister Zhang Wenkang said that 600,000 Chinese people have HIV. The goal, he said, was to contain the figure to 1.5 million by 2010. Yet the UN puts China’s infection rate at about 1 million for 2001 and predicts that by 2010, 20 million Chinese could be infected with the virus.
Still, it was seen as a breakthrough for a traditionally silent regime to even admit the figures and permit Gao to publish the book. The government seemed ready to tackle a problem it had long insisted did not even exist.
Yin pledged $12 million each year nationwide for HIV prevention and another $117 million to improve the safety of the blood supply through new blood banks and testing facilities. That’s on top of $900 million allocated earlier this year for blood supply improvements, says Ray Yip, a senior health adviser for UNICEF in China. The country even held its first national conference on AIDS in November, with speeches from visiting World Health Organization dignitaries.
“It’s improving by the day,” Yip says of the government’s response to AIDS. “People at the highest level have already shown a strong commitment reflected in allocation of funding. The efforts may not be the most cost-effective. But however awkward the whole process has been, after years of denial, they basically came clean in that August press conference.”
Yet with local officials shutting off affected regions to the Western press and with the state-owned media so mute on the epidemic that even educated Henan residents are unaware of its proportions, it is only natural for Gao to wonder how anybody will ever know the outcomes of such initiatives.
Henan is hardly the only stricken region in China. In fact, at the silence-breaking press conference, the health ministry named five other regions more seriously impacted and noted that most transmissions seemed to be occurring through unsafe IV-drug use. The largest foreign AIDS group, the China-UK HIV/AIDS Prevention and Care Project, is spending its $21.7 million on education efforts in Yunnan and Sichuan provinces in the far southwest.
“We have to focus on some specific areas and build up relationships with the local authorities first,” project coordinator William Stewart said. “We can’t be everywhere. China is too large -- and so is the problem.”
Stewart and others point out that statistics on HIV in China are hopelessly flawed. The only people routinely tested are prostitutes and drug users -- upon their arrest. This leaves experts with little reliable data on sexual transmission or the prevalence of AIDS among China’s gay men. Stewart wants to set up testing efforts in the gay bars of major cities -- solely for the purposes of getting a more accurate statistical snapshot. Yet in China, the concept of testing that is anonymous and confidential would violate the law, which requires reporting of the name of each person with HIV, Stewart says.
Ignorance of HIV continues to run rampant largely because the government-sponsored AIDS awareness program is devoid of substance. One poster that hung earlier this year in several health facilities offered no tips for avoiding HIV; instead, it showed a smiling, handsome, red-ribbon-wearing man and the words in Chinese for ’AIDS is everybody’s problem.’ And although the government does encourage condom use, it is for population control, not sexually-transmitted-disease prevention.
Ignorance is epidemic, as is stigma. Disclosure of HIV, for those Chinese who are aware of their positive status, sparks the sort of panic America saw in the days of Ryan White. Children are often expelled from school, parents lose their jobs, and neigbhors move away. In several cities, HIV-positive people are now legally forbidden to marry, and some workers at hotels, restaurants, travel agencies, swimming pools and beauty salons face mandatory testing.
In rare cases, the courts have stepped in. Last year, a 10-year-old Henan boy won $47,000 in a precedent-setting lawsuit against his county health department after he was infected through a blood transfusion, and this year a family was awarded more than $1 million. But none of this addresses prejudice or public scorn in a culture where conforming is key. “The intensity of discrimination is going to make people who know they have HIV not seek treatment and people who wonder not to get tested,” Yip says. What’s needed, he continues, is leadership at the government level. “Once you start doing the legislative work, people understand that those who have HIV have rights, too.”
He points out that these factors -- misinformation, discrimination, barriers to prevention and care -- hardly make China unique. “This is all part of a process,” he says. “The U.S. also has a very ugly chapter on this in its past, too. The Chinese just happen to be about 10 years behind.”
Zeng Hao returned to Kong Lin’s home before daybreak to walk me back to the main road. He waited with me for an hour before another rickety bus en route for Zhengzhou swept up and let me on.
In that hour, he quizzed me more about AIDS, and I realized he actually knew little about it. To him, HIV was transmitted through blood selling. He had heard vague warnings about sex or drug use, but nothing about how to avoid becoming infected. I handed him a copy of Gao Yaojie’s book.
“You are thinking China is backward,” he told me just as my bus was approaching. “Maybe we are. But we learn quick. All we are needing is to be told.”
CHINA’S VIRAL BRUSHFIRE
The red-lit areas of this map [Image not available. Red areas are: Xinjiang, Henan, Sichuan, Yunnan, Guangdong, and Guangxi] indicate the provinces of China hardest hit by the exploding epidemic of HIV.China’s plague is believed to have originated from intravenous drug use in trafficking areas in Yunnan Province, along the border of Myanmar and the “Golden Triangle” in Southeast Asia. From there, the virus has followed the drug route north to Beijing, cutting a broad and bloody swath through central China and beyond, hitting some of the nation’s most densely populated provinces. The epidemic has spread even further,particularly among impoverished farm workers in rural areas, through unsterile practices in the lucrative -- but illegal -- selling of human blood. Last year, China’s AIDS-denying government released official estimates of the number of people with HIV as 17,000. This year it says24,000. But UNAIDS places the actual number closer to 1 million, with an annual increase of over 30 percent. Although just a drop in the bucket of China’s total population of 1.25 billion, in the hardest-hit villages, prevalence is staggering, ranging from 20 to 80 percent.