Out Into The Open

Li Suijun, a factory worker in Henan province, didn't know what "HIV positive" meant when he heard his son's diagnosis in 1996. "I was sad and angry, sad and angry," he says. His neighbors taunted him. "Just kill the kid!" one of them muttered in passing on the street. Li was fired from his job, but he did not meekly accept the shame that usually goes along with HIV status in China. Instead, he and his wife launched what at first seemed a quixotic crusade, seeking financial redress from Xinye Hospital in the city of Nanyang, where their son, Li Ning, got a tainted blood transfusion. For years courts refused to hear the case, but father Li persevered, even managing to get a peek at the hospital's blood-donor records. Finally, the family was offered a settlement of $59,000--equivalent to 40 years of their former income. So far, Li has received only a quarter of the money and is lobbying for the rest. But the family's startling victory has made Li Ning, now 9, a celebrity. "He's become a star," says a local official.

It's a role that signals a shifting attitude toward AIDS in China. After the country's first known AIDS victim died in 1985, hospital authorities burned his belongings and even the furniture he had used. Many health officials willfully ignored AIDS, calling it a "foreigners' disease." Later, as HIV spread, the government dismissed it as the scourge of criminals and deviants. But that was before HIV began to creep into China's mainstream population. Officially, China still has only 20,000 registered HIV cases, but the Beijing office of UNAIDS, a United Nations program dealing with the disease, says the ailment is grossly underreported. UNAIDS estimates the actual number of infected Chinese at 500,000 or more. Without effective countermeasures, the agency says, the number of HIV cases in China could reach 10 million by 2010. But now China is beginning to confront the problem, shedding light on both a dangerous health crisis and the changing face of activism in the world's most populous--and often most secretive--nation.

Although AIDS remains a taboo topic in the hinterlands, HIV patients in Beijing and some provincial "hot spots" of the disease are coming forward to share their secrets. A few have even launched court cases, seeking treatment. And while many officials remain in denial, AIDS activism has forced parts of the bureaucracy to respond. AIDS-awareness classes are now mandatory in some universities. This week China's official anti-AIDS effort will be put on display to mark World AIDS Day on Dec. 1. Rock stars are slated to perform a benefit concert to raise money for government AIDS-prevention efforts. Across the country, an unprecedented television and poster campaign is being launched, headlined by Pu Cunxin, one of China's manliest movie stars. Its theme: "Men make a difference." (Males constitute 82 percent of China's HIV population.)

Attitudes toward AIDS activism have begun to shift for two reasons. Government officials who deal with the disease have traveled to Africa and India to study prevention programs. They were convinced that China's hard-line traditional strategies (such as promoting chastity as a "solution" to the AIDS crisis) would not work. And at the grass-roots level, HIV patients with nothing to lose are more or less immune to the traditional tools of repression. Many see themselves fighting corrupt practices, such as the collusion between health workers and black-market blood vendors, whose products are often tainted.

That's how Song Pengfei caught the bug. In 1998 Song, then 16, became one of the first Chinese to admit publicly that he is HIV positive. Song, who comes from rural Shanxi province, contracted the disease during an operation. The surgeons told his father the boy needed a transfusion and advised him not to go to a government bloodbank. Instead, they sent him to a bloodhead, as black-market vendors are known; they said his product was fresher. Song's father paid $37 for about 10 ounces--which turned out to be contaminated with HIV.

Ever since, Song and his family have been scrambling for money to buy Western medication, the "cocktail" of anti-AIDS drugs that costs more than $15,000 a year. That's a price no one in China can afford for long, if at all. When Song tested positive for HIV, the hospital agreed to pay $12,500 for drugs and another $2,500 for the family to move to Beijing. ("Our lives would have been in danger back in Shanxi," says Song's father.) But some of the hospital money got tied up in red tape, and the rest ran out long ago. Now an American charity, the Phelex Foundation, pays for the drugs from a Saving Song Pengfei Fund.

Publicity about Song's case brought him an unusual opportunity: a meeting with the professional donor whose blood had contaminated him. Qi Guohua had routinely sold his blood to vendors who pooled it in a tank with others' blood. They removed the plasma for sale and then transfused the rest back into the donors. Last year, after he learned he was HIV positive and had infected others, Qi tracked Song down to apologize. "It would be natural for you to hate me," Qi, then 18, said during a videotaped meeting. "No, you were tricked by the blood-heads," Song replied.

Hard work lies ahead as China begins to face the scourge of AIDS more openly. "There's a lot of prejudice and coldness out there because some people don't understand, so we try to let HIV patients feel the warmth in our society," says Xu Lianzhi, who runs the Home of Loving and Care, China's first private AIDS counseling and support group. Her program is based in Beijing's Youan Hospital, in a room decorated with cheery messages in traditional Chinese calligraphy. Outside, in room 703 of the hospital's AIDS ward, waits a seemingly healthy young man from Shandong province. He came to Beijing for a blood test and learned he was HIV positive.

In another sickroom, IV equipment surrounds the bed of an emaciated, 30-year-old woman from remote Sichuan province who contracted HIV from a blood transfusion while giving birth to her son in 1997. She and her mother plan to ask the Sichuan hospital that gave her the tainted blood to pay $1,800 a month for her stay in the AIDS ward. "And if they refuse, we'll sue," says the mother. The Sichuan hospital has already paid more than $3,500. But the patient has been in the AIDS ward for three months, and her drug cocktail is astronomically expensive. The hospital's blood money is about to run out. Soon the woman from Sichuan will share the fate of thousands of Chinese patients for whom activism has not yet produced hope.