Getting through the day
Self-help groups are sufferers of HIV and AIDS who work to raise money and awareness and offer comfort to fellow patients.
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 HÀ N?I — Decked out in an apron and head scarf, Thanh Ðào walks from room to room in the HIV/AIDS ward of Ð?ng Ða Hospital, cheerfully greeting its inhabitants and asking if they’re up for a bowl of chao, or porridge. One patient’s face is covered with lesions and several others — prison inmates who’ve come to the hospital for treatment — are shackled to their beds, but Ðào never wavers in her enthusiasm. Most people in Vi?t Nam would steer clear of those with HIV or AIDS, believing through a lack of education that the disease is far easier to spread than it really is. Ðào embraces them like they’re one of her own. And maybe that’s because they are one of her own. Ð?o, 38, is the team leader of Milk Flower (Hoa Sua), one of several self-help groups in the country run for people with HIV/AIDS, by people with HIV/AIDS. In the national fight against a potential AIDS epidemic, the self-help groups have their role, too, picking up the dirty work that others won’t, bearing witness to the danger of AIDS, and, most importantly, working to counter the stigma that labels them dead to society. It’s no secret that people living with HIV/AIDS here suffer discrimination. Employers fire their employees. One roommate kicks the other out. Teachers refuse to teach the child whose parents have HIV. Then the self-help groups are there to pick up the pieces. “Who can better help them than themselves?” said Philip Essl, the former manager of a United Nations volunteer-run tutoring session for people living with HIV/AIDS. “If you find out that you’re HIV-positive, the world breaks down for people. How can you help them overcome the psychological (problems)? Nobody else can do it better than peers or colleagues who’ve been through the same struggle.” The groups had simple goals at first, meeting a few times a month so that people with HIV/AIDS could share their experiences and difficulties. But as the organizations grew, they began setting up more elaborate activities for their members. The largest and most established of the northern groups is Bright Futures, which is based in Hà N?i and has 13 branches in 10 provinces. It was founded by a dozen members who originally met through Friends Helping Friends, an HIV/AIDS organization run by the government. But wanting independence, Bright Futures launched in January 2003. Today there are about 550 members. Pinned to the walls of its Hà N?i center are pictures of group activities, a Wheel-of-Fortune-type device used to play games that teach people about HIV and AIDS, and a set of rules, the eighth one which reads, “Don’t use drugs or practice prostitution.” All the groups provide money and personal care for their sickest and poorest members. All also have several projects to educate the public and families about HIV/AIDS. But Bright Futures also provides its members with huge discounts on the drugs needed to ease or prolong their lives, sometimes cutting prices in half. The group is currently in the beginning stages of a more ambitious project: to bring doctors once every few months for free checkups and to test members’ T-cell levels, a blood test which tells a patient’s stage of HIV or AIDS. “It’s very complex for HIV-positive people to go to the hospital or doctor’s office,” said Tung Ong, the group leader, as another member thumbs through medical records collected from the first time Bright Futures brought a doctor to its center. A Bright Futures branch in Qu?ng Ninh province, Vân Ð?n town, has 131 members, the youngest under 2. Qu?ng Ninh has some of the highest rates of HIV-positive people in Vi?t Nam. The group there provides special counseling for its female members. Many of the men contract HIV from drugs. Many of the women contract it from their husbands. “They know that their husbands have HIV but they think it’s a fact that their husbands have HIV, so they will get it too, as if it’s unavoidable,” said Hanh Bùi, 35, the Vân Ð?n’s group former group leader who is now working with the UN Volunteers. “So they don’t use any condoms or protection, because in their minds, this is normal. It has to happen.” Huê Ph?m, 26, was like those women, but she was an unwitting victim. She only found out she contracted HIV when she became pregnant and went to the doctor’s office. It was already devastating to find out she had a disease that could eventually kill her. It was even more so to learn she was now a pariah. “I felt like they wanted to put me on the margins of society,” Ph?m said. “I had to do something. People think that only bad people get HIV, but I wanted to let people know many women all over Vi?t Nam and all over the world have gotten HIV, and it’s not always their fault.” So Ph?m appeared on a national television program about HIV/AIDS — making herself one of two people at the time to publicly admit they had HIV — and afterward was contacted by other people living with HIV/AIDS. They set up the Hoa Phu?ng Ð? group in H?i Phòng in February 2003, naming the group after a flower found throughout the city. It currently has about 50 members. The group’s activities include paying the school fees of children orphaned by AIDS. But the group’s work also enters the realm of the gruesome. “They are the people who do the work that nobody wants to do,” said Quang Nguy?n, a French Vi?t Ki?u health consultant who works with the groups. After a person dies of AIDS, the members of Hoa Phu?ng Ð? clean and prepare the body for burial when the family is afraid of infection. They also hold the funeral. Nguy?n said he recently had to hold a workshop for the group because some members were suffering psychological trauma. “The members said they couldn’t sleep or stop thinking about it,” he said. “They said one man died on the street; his family didn’t want him dying inside the house.” The Milk Flower group, with 40 members, operates mostly in Hà N?i’s Ð?ng Ða district. In addition to serving chao to HIV/AIDS patients, the group teaches its members how to take medicine and meets every week to collect syringes discarded by drug addicts in some of Ð?ng Ða’s public areas, especially where children might be playing. Some other activities are smaller but no less important — the group holds holiday and birthday parties to lift members’ spirits. “People with HIV sympathize with each other,” Phát Ngô, 32, said. “The goal is to live a positive life.” Ngô has been HIV-positive since 1999. A few years before that he and his family were in a refugee camp in Hong Kong, but, unable to find asylum in other countries, they were forced to return to Vi?t Nam. When the adjustment proved difficult, Ngô turned to heroin to escape. That’s how he contracted HIV. “I was scared when I found out; I thought I’d die soon,” Ngô said. He began looking up information on the Internet and in newspapers. “I found out if I live a good life, I can live 10, 15 years.” Now a counselor and vice team leader for Milk Flower, Ngo also managed to quit drugs. But addiction is strong. Although the groups discourage drug use and have programs to help members quit, leaders from all three groups acknowledged that they can’t ensure all their members have stopped using drugs. The biggest problem facing the self-help groups is money. The groups have ambitious plans to expand services to help their members, but a shortage of funds constantly hovers over them. Milk Flower runs a garage and sells handmade woolen scarves to NGOs. Sometimes an international women’s group or an ambassador’s spouse will help raise money. CARE and Policy, two international NGOs, provide funding for some of the larger projects, such as Bright Futures’ plan to provide free checkups. But the grants always have an end, and the groups must compete against each other for limited funds. Of all the things the groups do, there’s one that is perhaps the most important of all: in fighting stigma and making members useful, they give HIV-infected people a reason to live again. “If you get HIV you haven’t died yet,” Huê Ph?m said. “People aren’t killed fastest by drugs or disease. Stigma is the fastest way to kill a person with HIV.”
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