Shunned, Women With H.I.V. Join Forces in Vietnam

HAIPHONG, Vietnam, May, 28, 2006 : The neighbors know what is going on when they hear peals of laughter coming from the house of Pham Thi Hue. The dying women have gotten together again.

Crammed onto a couch and little chairs, the women shout and clap as they talk about the city’s shortage of shrouds or about the dying man with the bloated stomach who slept under a bridge.

They are members of a support group for people infected with H.I.V. in a society where they are widely shunned, where drugs are scarce and treatment is expensive and where a diagnosis of infection is still, for most people, a sentence of death.

They gathered on a recent Saturday in this big port city near Hanoi, 15 women many of whom had not told their families they were infected sharing companionship and the relief of laughter from lives of poverty, illness and dread.

In the face of discrimination and in the absence of adequate health care, they are for the most part one another’s only support.

This is a country teetering on the brink of a nationwide epidemic, with more than 250,000 people infected with the virus that causes AIDS and with only 10 percent of those who fall ill receiving the treatment they need, according to Unaids, the United Nations agency.

The country’s health care system is well organized, but the disease has until now been concentrated among intravenous drug users and has not been treated as a priority. Experts say it is beginning to spread quickly into the broader population, and one of the chief barriers to prevention and treatment is the stigma that makes outcasts of those who carry the virus.

Ms. Hue, 26, who was infected by her husband, a drug addict, was one of the first to speak out publicly on television “to show that we are people, too.” The support group she founded three years ago — called Haiphong Red Flamboyant, for the name of a flower is expanding in this city and is a model for similar groups around the country.

What the women rarely talk about, except when they are joking, is the near-certainty that in time they, too, will fall ill and that they will be feeding, bathing and consoling one another, and caring for one another’s children, as one by one they die.

“The meaning of the group,” said Nguyen Thi Sau, 29, whose husband has already died from AIDS complications, “is so that when you die you are less lonely.”

In what they say is a form of therapy, the women have chosen to look directly into the face of the suffering that lies ahead, nursing, cleaning and feeding the sick, collecting the bodies of people who die alone in hospitals or on the streets and attending the funerals of those whose families have turned their backs.

“Some days I have to take care of four people who have died in the hospital,” said Ms. Sau, who worked at a shoe factory until she was fired. A number of the patients, she said, are prisoners who have been sent to the hospital to die, covered in their own filth and still chained to their cots.

“I’m the one who has to close their eyes when they die,” she said. “After that I can’t sleep at night.”

Over the past three years scores of women have been members of Red Flamboyant. Many have died, but the group has only grown and spawned new groups as more infected women step from the shadows and join.

Most of the women gathered that Saturday said they had been infected by their husbands here in a city where drug addiction is widespread, and most said their husbands had already died. All had lost their jobs when their employers discovered that they were infected.

Ms. Hue’s husband is now in the late stages of the disease in a drug-rehabilitation center. She lost her work as a tailor and he lost his job as a cook in a hotel when their infections became known.

She now works with the local Communist Party women’s union to expand support groups through the city, and she receives small grants from foreign aid organizations. The money is used to help members with emergencies and to distribute rice to people who have fallen ill and no longer have an income.

Support groups like this are an important part of the government’s strategy to combat the disease, said Nancy Fee, the country coordinator for Unaids.

The government is preparing new legislation now to combat the epidemic, some $50 million in assistance is arriving from abroad, and more drugs are becoming available, Ms. Fee said.

“But they still have to train a lot of health workers and set up the systems and protocols and they need a public information campaign,” she said. “That work is happening and it does need to speed up, it does need more of a sense of urgency.”

When the husband of Nguyen Thi Kim Van, 36, fell ill, Red Flamboyant bought him a small bed so he could sleep separately from his family, which was crowded together in his parents’ tiny home.

When he died, his parents evicted Ms. Van, and she took her three children to live in her mother’s even tinier home, where all five of them now sleep on one bed.

Ms. Van, who is H.I.V. positive, tries to support her family by selling small cups of tea on the sidewalk; Red Flamboyant gives her rice and money to send her oldest son to school.

At the same time, she has become an active member of the group, and it was she who crawled under the bridge to try to help the man with the bloated stomach. He was aggressive and frightening, she said, miming the scene, and she just jumped up and ran away.

“Did you touch his belly?” her friends shouted, laughing. “You were trying to take advantage of him, weren’t you!”

Not long after her visit to the bridge, someone took a photograph of the man, but his face is not visible in the picture. He is lying on the ground covered with a shroud, one of the bodies the group has collected for burial.

On this Saturday, the photograph lay forgotten among the teacups on a small table. Ms. Hue’s 5 year old son, Ha Minh Hieu, who is not infected, spent some time examining it.

As the afternoon passed, Ms. Sau, who had spent the morning cleaning and feeding an AIDS patient, leaned her head on the shoulder of a friend, Doan Thi Khuyen, 23, and they sang quietly together.

Ms. Khuyen, a former secretary, was dressed in a crisp white blouse with careful makeup and stylish hair, as if she were heading to the office.

But she was fired from her job months ago because of her illness, and she now sells lottery tickets on the street to support herself and her small child, who is also infected.

“I wanted to be a shoeshine girl, but all they have is shoeshine boys,” she moaned, and everyone laughed.

“Well,” said Ms. Hue, “at least you’re alive. You’re not dead yet.”

That seemed to strike the women as funny too, and they laughed again.

Copyright The New York Times