Pubdate: Tue, 14 Jan 2003
Source: New York Times (NY)
Copyright: 2003 The New York Times Company
Contact:  http://www.nytimes.com/
Details: http://www.mapinc.org/media/298
Author: Elisabeth Rosenthal

DESPITE LAW, CHINA'S H.I.V. PATIENTS SUFFER BIAS

GUANGZHOU, China - They consider themselves a family, though they are not 
related by blood. Like any family, all they want is a place to call home. 
But for the last four months they have been forced to flee from house to 
apartment, from neighborhood to neighborhood, evicted from every temporary 
residence they have managed to rent.

The problem is that all seven members of the group are infected with 
H.I.V., the virus that causes AIDS, and so no landlord in China's most 
cosmopolitan city (sometimes called Canton) is willing to take their money, 
no neighborhood willing to welcome them.

"When I had the idea of organizing a group house, I thought it would be 
easy," said Thomas, a 34-year-old Chinese businessman with AIDS, speaking 
perfect English, sitting at the linoleum dining room table of the secret 
apartment the group now calls home.

"There is nothing illegal about what we're doing," he said. "But people 
here are terrified of H.I.V./AIDS and feel that it would be dangerous to 
live among us. Nobody will allow us to settle."

Although China has strict laws prohibiting discrimination against people 
with AIDS or H.I.V., many patients identify the intense stigma - not 
illness - as their No. 1 problem. Indeed, the seven people who currently 
live here are healthy, three of them on antiretroviral drugs.

But for every national law prohibiting discrimination, there is a local 
ordinance that, for example, prevents people with H.I.V. from marrying 
freely or using public swimming pools. The police have a tendency to seize 
their businesses. Doctors tell their employers about their H.I.V. status. 
Surgeons refuse to operate on them.

"Since the 1990's, everyone has been saying we must not discriminate, and 
the papers have all made a big deal of the laws that have been written," 
said Li Dun, a legal expert at Qinghua University who has helped draft 
legislation. "But there are also regulations that amount to discrimination, 
and laws are unevenly enforced, so it all hasn't made a big difference."

As they putter around their most recent home, a three-bedroom walk-up in a 
decrepit building on the outskirts of the city, the seven friends would 
appear to be ideal neighbors. Quiet, neatly dressed, articulate, they take 
turns shopping, cooking and cleaning - also caring for members when they 
are not in good health. One former house member died recently.

They are from different parts of China and became infected with H.I.V. 
through a variety of routes. Indeed, their existence is a testament to how 
far H.I.V. has diffused into Chinese society.

There is Thomas, the businessman in jeans and running shoes, who was 
infected while working in Southeast Asia. There is Mr. Guang, a handsome, 
well-spoken man in a checked shirt, who acquired AIDS while dabbling in 
drugs during business trips.

There is Ms. Li, the newest house member, a pretty 35-year-old from Sichuan 
Province with dark mascara, who became infected here in Guangzhou, the 
capital of Guangdong Province, where she was working as a restaurant 
hostess. And there is Mr. Hai, dressed in a neat blue suit, a former 
factory worker who got AIDS after he sold blood in his native Henan 
Province to blood collectors who used unsanitary practices.

According to official policies in Guangdong, they should be applauded in 
their efforts to help each other and to help themselves.

"We must support associations and private organizations," reads the 
Guangdong Medium-to Long-Term Plan for Preventing and Controlling AIDS. 
"They have a special role to play in reducing discrimination against AIDS 
patients, H.I.V.-positive people, their families and kin."

Instead, each of them described the intense stigma he or she faced after 
contracting the AIDS virus, which pushed them to seek one another out and 
find shelter here.

One, a former drug addict named Mr. Sheng, was thrown out by his family 
when they discovered that he had AIDS.

"When I was on drugs, they could still accept me and forgive me, but when I 
got sick with H.I.V., they had nothing more to give," said Mr. Sheng, a 
thin, earnest man in a gray suit jacket.

Ms. Li, who first came to Guangzhou as a migrant laborer in 1995 and 
learned just two months ago that she was infected with H.I.V., says she can 
never go home again, since her family "could not handle it."

In an effort to find some good in his disease, Mr. Guang recalled that he 
had decided to grant an anonymous interview to a local newspaper shortly 
after learning of his diagnosis. "My hope was that people could better 
understand this through me," he said.

Although he was not identified in the article, it included enough details 
about his life that neighbors became suspicious. They gathered together and 
gave his mother an ultimatum: if Mr. Guang moved back home, the family 
would be run out of town. His mother was forced to abandon him.

"Guangzhou is a pretty open city, but people don't understand this 
disease," Mr. Guang said. "Cancer and heart disease are just ordinary 
illnesses. But they just equate this one with death."

Thomas first had the idea of starting a group home last summer, after 
visiting others with AIDS in a Guangzhou hospital. In 2000 he had returned 
from a stint as a businessman in Southeast Asia, almost dead from the 
disease. "I thought I was finished," he said. "I was so thin and had 
blisters all over my body."

One of China's few AIDS patients with the money and connections to get 
started on imported AIDS medicines from the West, he recovered, but at a 
cost of $1,000 a month, which even he could not afford over the long term. 
He now buys generic versions of the same drugs via the Internet from India, 
which cost him about $75.

But during his months in the hospital, he befriended many fellow carriers 
of H.I.V. who did not have such resources and made a vow to help them. He 
started a Web site about the disease and thought about creating a drug 
fund. But then he realized that most of his new friends had a much more 
basic need: They had no place to live.

So last August he found a house to rent in a quiet village outside 
Guangzhou, and he and his friends moved in, relying on donations to pay 
their expenses. "It was a pretty remote place, and I thought it would be a 
good place to hide," he recalled with a grin.

Instead, the local residents immediately became suspicious about the 
presence of so many outsiders and called the police to investigate who they 
were. The police asked why they were there, Thomas recalled. "I didn't want 
to lie, and told them," he said. "The next day we had to move out."

That led to the rental of a second home, but it was not far enough away. 
Someone tracked them down and told the local security team, which leaked 
the story to the local press. Within hours the neighbors insisted that the 
landlord evict his new tenants, and the new landlord readily complied again.

On Dec. 1 they moved into their current flat, which provides better cover. 
It sits in the middle of a nondescript neighborhood populated by migrant 
workers, where many adults often share a room and strangers come and go.

The members of the home would like to do work in AIDS education, to counsel 
newly diagnosed patients. The local hospital that treats the disease has 
asked for their help, but for the moment they say they are scared that such 
work would draw attention to their presence. Their current landlord is 
unaware that they are H.I.V.-positive, and they do not want to lose their 
current peace.

In response to their ordeal, Thomas has fantasized about suing, using 
Chinese laws that prohibit discrimination to protect their rights. But he 
quickly rejected the possibility.

"Sure we could use the law against them," said Thomas, shaking his head, 
"but after being in court everyone would know we were H.I.V.-positive. Just 
think of the exposure!"

Xia Guomei, a Shanghai researcher who has studied discrimination, said: 
"There is no patient who is willing to use the law to protect himself. They 
worry that if you use this weapon it could backfire on them."
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