The public face of AIDS in China

• Source: Global Times
• [22:59 February 03 2010]
• Comments

By Li Xiaoshu

Zhang Detian can never forget the summer night in 2008 when three luxury cars screeched to a halt in front of his brick cottage and more than 10 officials, all formally dressed in dark suits, confronted him at his doorstep.

"You know what, you got AIDS!" an unnamed official yelled at the 29-year-old farmer.

A cluster of whispering villagers bunched together in front of Zhang's creaking door were suddenly shocked into silence.

"There were crowds of people. I was the last one to learn the fact," Zhang told the Global Times. "I felt as if I were a criminal."

Zhang said he was so angered by this public humiliation that he briefly had thoughts of revenge, "spreading the virus to every person around me."

One week earlier, Zhang had accompanied his wife, who was seven months pregnant, for a routine medical test. The lab results would eventually show that both Zheng and his wife were infected with the AIDS virus. The farmer refuses to discuss how they might have contracted the deadly disease, spread through sex, blood, needles or birth. But the delight of soon becoming a father was ruined by the stigma of becoming an AIDS patient.

The news travelled to every corner of the county.

Villagers dared not buy the fish Zhang and his wife sold.

Local authorities forced his wife to abort the baby boy in her uterus.

Like so many other AIDS patients in China, Zhang and his wife became instant outcasts in a society where the private suffering of AIDS patients is the worst kept secret shame.

The number of people infected with the virus reached 319,877 by October 31, 2009, according to China's Health Minister Chen Zhu who announced the statistic at a press conference in November last year.

Emotional damage

Zhang was among 73 people who tested HIV positive last year in the Chongyang county of Xianning, a prefecture-level city in Hubei Province. Little respect is shown for the privacy of AIDS patients in the county.

One of those who tested positive was 32-year-old Wang Lujin, a sex worker for nearly 10 years. Despite being a prostitute, Wang was able to live with her shame and carry on an otherwise normal family life. But things changed after an acquaintance revealed her secret life as an AIDS patient. At her cousin's wedding ceremony, the acquaintance asked Wang to sit farther away at the banquet table.

In 2008, Wang was diagnosed as an HIV sufferer by the Yixing Center for Disease Control and Prevention (CDC) in Jiangsu Province. Before leaving the city, she asked doctors at the center to withhold the medical information from her family, at least temporarily.

Wang was furious to learn that eight medical workers from the CDC in Chongyang County, her hometown, were already sitting in her house waiting for her to arrive.

"I don't mind dying, but I'm still alive," she told the Global Times. "Now, no one plays mah-jong with me, not even my relatives."

Local medical personnel and residents seem unaware of the emotional damage inflicted on AIDS patients when their confidential medical information leaks out and people begin to gossip.

Jian Jian, 41, a Chongyang AIDS patient seeking treatment in Wuhan, the capital of Hubei Province, discovered that an AIDS prevention director at the local CDC told others about his misfortune during poker games.

He said at least eight people knew of his medical condition within one week, and each of them spread the word to others.

"I want those who ruined my name to pay a price in blood," Jian told the Global Times.

The man and his family prefer to live in a squalid, 13- square- meter bungalow, with only four plastic stools, a wooden table and a makeshift bed as furniture, rather than return to Chongyang, where people would be frightened and embarrassed by their presence.

" I don't want my children to live with this shadow over their heads, " he said.

Though Jian reported the invasion of privacy to the Xianning CDC, which oversees the work of the center in Chongyang, the official with a big mouth neither apologized to him nor offered to compensate him for his emotional pain and suffering.

"Many AIDS control officials do not follow their professional code of ethics because they don't truly understand our problem and emotional pain," Chen said. "They just treat our privacy as a joke, or a tiny matter that nobody cares about. But are we doomed to be hurt?"

"They only worry about how to publicize disease prevention achievements and how to squander government funds."

The two officials from the two centers both declined to comment when a Global Times' reporter asked why no one was reprimanded for the release of confidential medical information.

Chen Depu, a retired official of the Chongyang CDC and founder of Tonggubo'ai Group, a local NGO dedicated to AIDS prevention, said the problem in Chongyang was "totally accidental" and the people responsible should have been warned.

"Health authorities have stressed the protection of privacy during the AIDS control process, but some government employees still ignore the outcome subconsciously," said Chen. "Volunteers and employees in non-governmental organizations are better-behaved."

However, most local AIDS patients said they feel helpless to fight back against the "label" that brands them as disease-ridden pariahs.