Facing A Demon

Li Suijun, a chemical factory worker in Nanyang city, Henan province, didn't even know what "HIV positive" meant when he heard his son's grim diagnosis in 1996. Li soon found out. Neighbors taunted him, and one cruelly suggested a way to solve his family problem: "Just kill the kid!" he muttered as Li went for a late-night walk. Li was fired from his job. "I was sad and angry," Li told NEWSWEEK before bursting into tears. Angry enough to confront the social ostracism--and government indifference-- that most HIV patients and their families face in China. He and his wife launched what at first seemed a quixotic crusade--seeking financial redress from the Xinye People's Hospital where their five-year-old son, Li Ning, got a tainted blood transfusion. Confronting local and provincial governments was a Kafkaesque nightmare. Courts downplayed the case--and for years refused to hear the family's petition. Li persevered and managed to peek at the hospital's blood-bank donor records--before they mysteriously disappeared. Finally, the family appealed to the supreme court of Henan and was offered a settlement of $59,000--the equivalent of forty years' income. So far, says Li, he's received less than a quarter of the money, "and we're not satisfied." He and his wife are lobbying for the rest. Meanwhile, Li Ning, now 9, is a local celebrity. "He's becoming a star," said a town vice mayor who's offered to pay for his schooling.

In the netherworld that is China's growing HIV community, Li's legal victory is a startling breakthrough. After China's first AIDS victim died in 1985, hospital authorities burned the man's belongings--and even the furniture he used--in a bonfire. Many of the country's hospitals and health agencies willfully ignored the health issue. To them HIV was a foreigners' disease. Later, as the virus spread, government officials dismissed it as the scourge of criminals and social deviants. But that was before the disease began to creep into China's mainstream population. Nowadays, yuppies, People's Liberation Army soldiers (following story) and innocents like Li Ning have HIV. Though China has only 20,000 registered HIV cases, the Joint United Nations Program on HIV/AIDS (UNAIDS) office in Beijing says the problem is grossly underreported. It estimates the actual figure to be half a million or more. Without effective countermeasures, says UNAIDS, the number of HIV cases in China could skyrocket--reaching 10 million by 2010. That would make China "one of the biggest AIDS countries in the world," according to researcher Zeng Yi.

That's the bad news. The good news is that while AIDS remains a taboo topic in the hinterlands, China is beginning to confront the heath crisis. Fear is starting to give way to action. Some HIV patients have stepped forward to tell their terrible secrets. A few have launched court battles against a medical-care system rooted in the past. China's official anti-AIDS effort will be on display this week to mark World AIDS Day on December 1. The HIV/AIDS ward in Beijing's Youan Hospital has been spruced up with new paint and potted flowers. Famous rock stars are slated to perform a benefit concert in Beijing to raise money for government AIDS-awareness efforts. And, using television ads and posters, one of China's most wholesome male celebrities, TV and movie star Pu Cunxin, will kick off an unprecedented prevention campaign, organized around the theme "Men Make a Difference" (males compose 82 percent of China's HIV population). When ministry of health officials first approached Pu about the project, he refused to cooperate because of the association of AIDS with "drug use and unhealthy sex." But a few minutes after hearing the agency's pitch, Pu phoned back and offered to help. The actor says he was inspired by the example of a martyred Chinese hero from the Korean war: "I felt the honor of taking on a gigantic enemy."

For HIV patients everywhere, contracting the virus evokes feelings of helplessness and isolation. But nowhere is the terror more acute than in China. Only a few individuals are lucky or well-connected enough to obtain the AIDS "cocktail"--a mix of drugs from western companies that has proved effective in fighting the virus. Beyond that, there is little knowledge of the disease. Ignorance and prejudice-- combined with an absence of social activism--had until recently created an invisible demon. Most Chinese people still view AIDS with horror and shun its victims. To the government, the drug addicts, prostitutes and gays who risk contracting the virus are criminals. Pockets of the Chinese bureaucracy still wallow in denial--or, worse, have actively covered up the AIDS problem. Some local authorities continue to view community organizations and independent researchers with suspicion, worried that they'll expose some of China's ugly realities to the world. "Doctors and health professionals have lost their jobs, like me," says activist Wan Yanhai, a former public heath worker who was fired after speaking out about AIDS.

In China's cities and AIDS hot spots, however, the story is beginning to change. Though still controversial, AIDS activism is becoming more open--even necessary. AIDS-awareness classes are now mandatory in some universities. Often the classes are the students' first exposure to sex education--and other stark facts of life. "Maybe you have a friend of a friend who uses drugs," says the instructor in one such class in Yunnan province, which has more HIV cases than any other area. Volunteers in the class demonstrate how to sterilize hypodermic needles (72 percent of China's HIV cases spread via needle-sharing by drug users). Even drug addicts want to know more about HIV--especially if they think they're infected. NEWSWEEK has learned that inmates of compulsory drug-rehabilitation centers in Yunnan have rioted on several occasions because they suspected the results of blood tests--compulsory in the centers--were being kept secret from them. Two years ago officials of Beijing's government AIDS- prevention office began assisting the city's most prominent gay hotline, which fields hundreds of phone calls each month. "They give us condoms to pass out in gay bars," says a volunteer.

Song Pengfei and his parents live in a condemned building on the outskirts of Beijing. "You'll never leave this place alive," reads ominous red graffiti on the compound's walls. But that could prove true no matter where Pengfei lives. The lanky, pale 18-year-old is the first Chinese to stand up and admit he's HIV positive. "Some people just want me to disappear," he says. Pengfei's father, who chain-smokes cigarettes, has been emboldened by his son's health problem. He rattles off important dates in his fight against government indifference. He remembers the many letters he's written to President Jiang Zemin, asking for help to finance his son's AIDS treatments. He recalls the neighbors--even doctors--who refused to come near his son. The family lived inremote Shanxi province until 1998. Veering between depression and defiance, at one point he stops and his weary face crumples in despair. Tears stream down his cheeks. "I'm not afraid," says the father. "What more can they do to me? My son has AIDS."

Like a dissident, he makes frequent reference to the "February 18 incident." That's the day in 1998 when Pengfei had surgery at the Linfen #2 hospital. Pengfei had sat accidentally on a pair of scissors and suffered a centimeter-long gash. He showed the swollen cut to a Linfen hospital doctor, who advised simply to keep the wound clean. But then two surgeons intervened. They recommended an operation to root out the infection and before that a blood transfusion. "They said Pengfei was anemic and told me not to go to a government blood bank," recalls the father, "They [pointed] me to a blood vendor who they said had fresher blood--and cheaper as well." He paid $37 for 300 c.c. of what turned out to be black-market blood--contaminated with HIV. The doctors then botched the unnecessary operation, puncturing an artery in Pengfei's leg. The boy survived, but had to travel to a Beijing hospital for further treatment. After a blood test, he was abruptly transferred to Beijing's Ditan Hospital for infectious diseases. There, doctors revealed that Pengfei was HIV positive.

Ever since, the Songs have been scrambling desperately for money to treat Pengfei. Some of his doctors recommended the U.S.-produced AIDS cocktail. "They said if Pengfei kept taking the pills without interruption, he could live a normal life," says his father. But the medication costs more than $15,000 a year--about 50 times what Song made before he lost his job as a textile worker. He pressed local authorities for compensation. The hospital agreed to provide $12,500 for drugs and an additional $2,500 for the family to move to Beijing. ("Our lives would be in danger back in Shanxi," says Song.) But some of the money got tied up in red tape, and the rest ran out long ago. Since May 1999 the Massachusetts-based Phelex Foundation's "Saving Song Pengfei Fund" has financed his regular dosage--11 pills a day.

In October of 1999 Pengfei spoke out about his disease. He traveled to a World AIDS Conference in Malaysia and there said publicly that he was "dissatisfied" with the government's response to his plight. His statement enraged more than 50 Chinese participants from the Ministry of Health. Later when one Beijing apparatchik saw Pengfei's friends trying to raise donations, the bureaucrat exploded. "You dare ask for money," he fumed, "after you've showed a negative image of China to the entire world?" Pengfei says his message to the world is simple: "Please don't politicize this medical issue. Everyone's equal, including AIDS patients." His father is not so equable. "Does my son look like an anti-China element?" Song asks. "Tell the world that some people in China's government are covering up--they're just like gangsters."

The Songs are an exception. Most Chinese HIV carriers perceive the virus as an immediate death sentence. For some victims, counseling sessions alone have saved them from killing themselves. At one workshop for HIV patients in the provincial capital of Kunming, Audrey Swift of the Australian Red Cross in Yunnan showed Chinese HIV patients a video of their counterparts in Thailand, who had lived for quite some time with the virus. At first the Chinese "were shaking and crying when they came in. They thought they were going to die tomorrow," she said. But after seeing the video, "they said, 'Look at those people, they've been alive for years'."

At Yunnan University in Kunming three female students walk to the front of a class and dutifully inflate condoms. Their classmates, seated on wooden benches around the cement-walled room, giggle. "This is the first time I've ever seen a condom," says one girl with braids. For many it's an eye-opening experience. "This one has ribs, it has the purpose of stimulating the woman," says the instructor, rolling a condom onto a wooden dowel. "This one has fragrance." The room is stifling hot. Cardboard taped over a broken window blots out the daylight. "How do we lower the risks during vaginal intercourse?" asks the instructor, a stout, rosy-cheeked young woman. The students chant in unison: "Use a condom!"

Condom advertisements are illegal, or at least controversial, in most places in China. But Yunnan is at the epicenter of the country's HIV/AIDS explosion. The southwestern province borders Burma, Laos and Vietnam, all of which have raging HIV/AIDS epidemics. Over the last decade, the HIV virus has followed drug-trafficking trails from the Golden Triangle into Yunnan, spread by legions of infected needle-sharing drug addicts. Local authorities, faced with a major health-care crisis, have traveled to places such as Africa and India to study AIDS prevention. As a result many are more progressive than elsewhere in China. The AIDS-prevention class at Yunnan University is one of six programs around the province where local authorities, in cooperation with the Australian Red Cross, broach cultural taboos. "The traditional excuse is always that using a condom is against Chinese values," says an official from another foreign nongovernmental organization (NGO), "but here there's more openness--because we're reaching the point where the epidemiological curve is taking off."

Two years ago, HIV was nowhere on the radar screen of Zhang Wanqiang, then a rising young star in a major provincial factory. He planned to marry his girlfriend, Huang Mei, a 25-year-old office worker. (Both names are pseudonyms.) Instead, the bedroom that she furnished lovingly with a cheery yellow quilt became their not-so-gilded cage. In 1998 Zhang submitted to a routine but mandatory heath exam in preparation for leading a delegation overseas. To his shock Zhang learned he was HIV positive. His factory was informed--and he was soon sacked. Worse, Huang tested positive too. Now they don't dare admit their relationship to anyone, lest Huang become a pariah. "On the street we don't even walk together," she says. They meet only four or five nights a month in their secret lovenest. Zhang is working on a book about his illness and wants to unite HIV-infected Chinese in a nationwide organization. Huang flirts with the idea of openly admitting her HIV-positive status on World AIDS Day.

With HIV cases growing by more than 30 percent annually, China's overburdened health system isn't yet able to cope with the looming epidemic--not medically, not financially and certainly not emotionally. NGOs are quietly working to fill the gap. "There's a lot of prejudice and coldness out there because some people don't understand," says Xu Lianzhi, head of the "Home of Loving and Care," the first AIDS-focused NGO in China. Xu has met more than 200 of China's early HIV patients--and known dozens who've died.

Xu's counseling and support organization is headquartered in Beijing's Youan hospital, in a modest room decorated with framed photographs and cheery messages written in traditional Chinese calligraphy. Outside, in one patient's room, IV equipment surrounds the bed of an emaciated 30-year-old Sichuan woman who contracted HIV when she was giving birth to her son in 1997. She got a tainted blood transfusion. The Sichuan hospital that gave her the bad blood has already paid more than $3,500 for the young woman's treatment in Beijing. But the victim's treatment costs will rise much higher. She and her mother plan to ask the Sichuan hospital to pay $1,800 a month for her stay in the AIDS ward. And if they refuse? "We'll sue," asserts the mother. She says she's ready to join with other HIV families to take legal action in Chengdu's intermediate court. HIV and AIDS patients in China face extreme hardships--but they are starting to stand up for themselves and, in doing so, prod a fearful nation.