Dying in Vietnam, they are ignored but trying to laugh
Pham Thi Hue, 26, an HIV patient at her office in Hai Phong, Vietnam with her 5-year-old son, Ha Minh Hieu. (Chau Doan for the International Herald Tribune)
HAIPHONG, Vietnam -- 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, they 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.
Mostly women, they are members of a support group for people infected with HIV in a society where they are widely shunned, where drugs are scarce and treatment is expensive, and where a diagnosis of infection, for most people, is still a sentence of death.
On a recent Saturday in this big port city near Hanoi, 15 women and one man -- many of whom have not told their families of their infection -- gathered to offer one another companionship and the relief of laughter from lives of poverty, illness, and dread.
In the face of discrimination and in the absence of adequate healthcare, they are for the most part one another's only support.
This is a country teetering on the brink of an epidemic. More than 250,000 people are infected with HIV, and only 10 percent of those who fall ill receive the treatment they need.
The disease is spreading rapidly from its core population of intravenous drug users, and one of the chief barriers to prevention and treatment is the stigma that makes outcasts of those who carry the virus.
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 is expanding through Haiphong 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 become severely 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 of AIDS, ``is so that when you die you are less lonely."
What they say is a form of therapy: They 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 on them.
``On some days I have to take care of four people who have died in the hospital," said Sau, who worked at a shoe factory until she was dismissed. Often patients are prisoners who have been sent to the hospital to die, 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 Hue's group, called Haiphong Red Flamboyant, for the name of a flower. 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 on that recent Saturday said they had been infected by their husbands here, in a city in which drug addiction is widespread. Most said their husbands had already died.
All lost their jobs when their employers discovered they were infected. Hue's husband is 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 women's union to expand support groups through the city, and she receives small grants from foreign aid organizations. The money is used as a fund 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 Vietnamese government's strategy to combat the disease, said Nancy Fee, the country coordinator for UNAIDS, the United Nations agency that deals with the disease.
The government is preparing legislation to combat the epidemic. About $50 million in assistance is arriving from abroad, and more drugs are becoming available, 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, the Red Flamboyant group bought him a small bed so he could sleep separately from his family crowded together in his parents' tiny home.
When he died, his parents evicted her, and she took her three children to live in her mother's even tinier home, where all five of them sleep on her husband's bed.
Van, who is HIV-positive, tries to support them by selling small cups of tea on the sidewalk, and she receives donations of rice from the support group and money to send her oldest son to school.
Khuyen, a former secretary, was dressed on that Saturday afternoon 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 HIV-positive.
``I wanted to be a shoeshine girl, but all they have is shoeshine boys," she moaned, and everybody laughed.
``Well," said Hue, ``at least you're alive. You're not dead yet."
That seemed to strike the women as funny, too, and they laughed again.