Ever since her husband died in 2001, Vatey has been keeping her heavy burden secret, not wanting to share it with friends, family or even her own children.
No matter how hard it is—and she knows she now must get treatment—the 38-year-old woman will not reach out within her community for help.
“I do not want people in my community, including my parents, to be aware that I am HIV positive,” she said. “Because I do not need my children being called the children of parents living with HIV-AIDS.”
Vatey contracted the disease from her husband, a police officer in Kompong Cham province, who she married in 1994. “He had a lot of mistresses and some who were also sex workers,” she said.
Shortly before his death at 40, her husband suggested that she and her children get tested. This is how she discovered that she and her daughter, now 8 years old, are HIV positive. Her son, now 13, does not have the disease.
But Vatey did not let her children or anyone else know. “I’ve noticed other children with parents living with HIV-AIDS are not so welcomed by people in community,” she said. “I hide and keep it secret because of my beloved kids.”
Her hope is to get anti-retroviral treatment for herself and her daughter at NGOs or health centers, she said, “but in other communities where they do not know my kids.”
According to Keo Tha, a founder of the Women Network for Unity in Phnom Penh, Vatey is far from alone in wanting to hide her illness. “I’ve noticed and experienced that many people living with HIV-AIDS hesitate to speak out about the virus to the public and people in their communities, even their own parents,” she said. “Kind-hearted parents want to protect their children from the emotional harm and pain of being called the children of parents with HIV-AIDS…. Although the stigma and discrimination are diminishing every day.”
WNU’s main purpose is to offer support, education and health services to male, female and transgendered sex workers—it is currently helping more than 5,100 members among whom around 100 have HIV-AIDS and 70 receive anti-retroviral treatment at public hospitals, Keo Tha said.
However, she said, hundreds of garment workers and students come to the association’s office for HIV-AIDS tests and treatment, not wanting to be seen seeking help elsewhere for fear of discrimination at school or in the workplace.
In her opinion, there no longer is discrimination against people infected with HIV-AIDS within the health sector, but about one person out of 10 in the general public continues to shun them.
A young man called Nancy faced such prejudice in Kompong Thom province after his father died of AIDS in 1998 followed by his mother in 2000.
“Those people suspected my younger sister and me of also having been infected with HIV-AIDS by our parents,” even though neither he nor his sister had the disease, he said.
Not only did parents prevent their youngsters from befriending Nancy and his sister but they even stopped buying the cakes their grandmother made, he said. As soon as he had finished high school, Nancy left his home in Baray district and came to Phnom Penh in late 2000 to find work.
After living on the street for nearly two years, earning about $0.50 a day helping cars park near Wat Botum, Nancy met Jessy.
Jessy said he had been raised in a brothel in Tuol Kok district, the owners having found him as a baby on a street, abandoned near the river.
Jessy was what Cambodians call a “sexy boy,” a male sex worker who dresses as a woman for male clients. So the young man from Kompong Thom province followed Jessy’s example and became a sexy boy to be able to support his grandmother and sister, he said. Today, 26-year-old Nancy is a second-year tourism student at a Phnom Penh university, and shares a room with Jessy for $25 per month.
Interviewed in a Phnom Penh coffee shop recently, with Jessy, now 29, dressed for work- in full female make-up, a knee-high skirt, white T-shirt and his hair tied up—Nancy and Jessy said they fully agree with parents keeping their illness secret when they are infected with HIV-AIDS. But, they stressed, those parents must seek treatment at health centers or NGOs as soon as their health start to decline.
As for themselves, Nancy and Jessy said they don’t know whether they have been infected with the disease because, even though they insist on using condoms, some clients refuse to do so.
“Although, sex workers are the vulnerable group [to HIV-AIDS infection] and the group who face a high risk of transmitting HIV-AIDS, we are not so concerned because the population of sex workers is not too high-estimated at around 20,000,” compared to the overall population, said Dr Ly Penh Sun, deputy director of the Health Ministry’s National Center for HIV-AIDS, Dermatology and STD.
According to figures released by the Health Ministry in June, the percentage of 15-to-49-year-old Cambodians with HIV infection has dropped from 1.2 percent in 2003 to 0.9 percent today. Data collected from NGOs, health centers and hospitals indicate that 65,000 people have the disease in the country, and 23,587 of them receive free anti-retroviral treatment, Ly Penh Sun said.
But in spite of progress made, Ly Penh Sun said, “We have found out that this fatal virus is being transmitted from husbands to wives, so the housewives are becoming the group at high risk of being infected by HIV-AIDS.” One major concern is children being infected during pregnancy, he said. “But there is a large number of housewives throughout the country, and it’s quite hard to intervene.”
Which is why Ly Penh Sun is adamantly opposed to a mother hiding her illness regardless of the discrimination she and her family may face. “To hide such information, it seems she is discriminating [against] herself,” he said. “Whatever she is doing amounts to trying to kill herself by not disclosing the fact or reaching out for health treatment.”
In addition, he said: “Some of her children infected with this virus need immediate treatment as well.”
Ly Penh Sun said that it is quite difficult to eliminate discrimination against individuals suffering from HIV-AIDS at the village level, but that NCHADS has noticed a definite improvement.
“We judge and continue believing that discrimination is a big issue, though it is only a low percentage of the public that continues to discriminate,” he said.
In an effort to address the issue of prejudice, NCHADS has run training and information programs among healthcare workers throughout the country in order to reduce discrimination against patients with HIV-AIDS, Ly Penh Sun said.
NCHADS has also created self-help groups at various health centers where people with the disease gather once a month and meet with health officials and HIV-AIDS experts to get information on anti-retroviral treatment, curbing disease transmission and eliminating discrimination against infected people, Ly Penh Sun said.
“Anyone who is positive with the HIV-AIDS virus can join the self-help group,” he said, adding that about 300 people are now involved in those groups.
People with HIV-AIDS, Ly Penh Sun said: “They should not keep themselves isolated.”