When her father died of AIDS in 2003, Pyae Phu Khaing* was just 3 years old, and only two years later her mother died of the same disease. The young girl fell into the care of her grandmother.
But her hardships were not over. When she suddenly began to lose weight while in primary school, a doctor advised a blood test. It found she was HIV positive. She was 12 years old.
The shock of the news and subsequent antiretroviral treatment (ART) provided by a private HIV/AIDS clinic in Rangoon’s North Dagon Township forced her to leave school for a year. After she regained strength and the condition was brought under control, she returned with the help of the clinic’s staff.
Now she is completing her ninth grade exam and Pyae Phu Khaing says she wants to become a nurse.
Her situation, however tragic, is better than that of most children in Burma who have been infected by HIV/AIDS, or who lost their parents to the disease, according to Nay Linn, operations manager for the Phoenix Association (Yangon), a self-help group for people living with HIV.
Many of the children struggle to continue their education due to a lack of money or because of stigma surrounding the disease, he said, citing a Ministry of Health and Unicef survey among 1,511 caregivers to children who lost parents to HIV/AIDS in 13 states and divisions.
Some 210,000 people are currently living with HIV/AIDS in Burma, of whom around 160,000 receive lifesaving ART based on the World Health Organization’s guidelines, according to Medecins Sans Frontieres.
Services to help children affected by the disease are limited. “Only a few groups are supporting HIV-infected children in our country,” Nay Linn said, adding that these NGOs usually prioritize free health care over education support.
From 2005 to 2013, the Phoenix Association funded the education costs for children from HIV-affected and low-income families, but since 2014 a funding shortfall means that it can only provide free stationery, he said.
Myint Zaw, an official in charge of the HIV/AIDS clinic in North Dagon Township, whose organization helps arrange schooling, tuition and mental health support programs for HIV-infected children, also said financial support for such programs was limited.
“Despite our financial support, it is not sufficient. These students are still in need of many other things,” he said.
His organization helps HIV-infected children and also children whose parents are either HIV patients or have died from HIV.
He added that more vocational training programs were needed to support children who drop out of school, or for programs to tackle discrimination against these children while they are at school.
According to health workers, it is common for HIV/AIDS patients to suffer from depression because they cannot disclose their disease or are shunned by the community if they do.
This is no different for children affected by it. “I fear that my friends will find out that I am suffering from the disease,” said Pyae Phu Khaing, who has kept her condition secret from her classmates.
Phyu Phyu Thin, a National League for Democracy (NLD) lawmaker and founder of the HIV/AIDS Prevention and Care Centre in Rangoon’s South Dagon Township, said the issue often gets worse with age as children realize the limits set by their life-long illness.
“These children suffer more and more depression as they reach higher school classes,” she said.
Phyu Phyu Thin said laws are in place that should prevent discrimination, but that public education on the issue is falling short.
“Myanmar already has adopted a law on infectious diseases. It defines non-discriminatory treatment against the disease-affected persons and guarantees equal rights to education for them,” she said. “But more educative programs and legal protections are needed for these people.”
*Names were changed to protect the identity of some persons in this story, which first appeared on Myanmar Now, Supported by Thomson Reuters Foundation