Living with stigma: What it’s like for some of Indonesia’s HIV-positive kids
Indonesia is estimated to have about 564,000 people living with HIV, around 255,000 are receiving ARV treatment
SURAKARTA, Indonesia (MNTV) – Indonesia’s struggle to care for children living with HIV is laid bare in a converted school building in Surakarta, also known as Solo, where 36 HIV-positive children live across two shelters sustained almost entirely by private donations and volunteer labour, highlighting persistent gaps in state support despite national treatment targets, reports The Straits Times.
This unlikely space is home to 19 children born with HIV. Across town, another 17 live in a second shelter. Together, the two homes depend almost entirely on three volunteers and a patchwork of private donations to survive.
On Nov 28, the children were grieving the recent death of 17-year-old Siti Safia (not her real name). She had secretly stopped taking her antiretroviral (ARV) medication, leading to a month-long hospitalisation and complications that resulted in meningitis.
“We found many pills hidden under her bed,” said Puger Mulyono. “She held them under her tongue and spat them out later,” added the 51-year-old volunteer, whom the children affectionately call ayah, meaning father in Bahasa Indonesia.
Siti was the latest of 26 residents from the two shelters to have died since 2012. Her story underscores both the fragile lives inside these modest homes and the gaps in Indonesia’s support system for people living with HIV.
Indonesia is estimated to have about 564,000 people living with HIV, according to the Health Ministry. Around 255,000 are receiving ARV treatment. Although ARV drugs are free at public health centres, fewer than half of the country’s 13,700 facilities dispense them.
“All health facilities (in the country) will have HIV antiretroviral drugs in the next several years. We aim to achieve a 95-95-95 target by 2030,” said Prima Yosephine, the Health Ministry’s director of health surveillance and quarantine, referring to the global benchmark for HIV epidemic control.
Progress, however, has been slowed by resource constraints and shrinking foreign assistance. Funding for Indonesia’s health programs was hit particularly hard by the Trump administration’s freeze on foreign aid in January 2025, widening gaps that non-governmental organizations (NGOs), community groups and individuals are increasingly forced to fill.
In South-east Asia’s largest economy, several hundred organizations are involved in HIV/AIDS work, but physical shelters for children with HIV are rare, likely numbering fewer than a dozen nationwide.
Kiki Annisa, programme manager at the Association of Positive Women Indonesia, said the situation is uneven rather than uniformly bleak. “About 40 pc of HIV programs in Indonesia are funded by the government, 40 pc by the Global Fund, and the rest by local social security agency BPJS and others, including USAid,” she said.
The bigger issue, she added, is unequal distribution of resources, with high-priority areas like Jember in East Java and Nabire in Central Papua often underserved.
The story of Solo’s shelters began in late 2012, when three volunteers took in an 18-month-old toddler named Budi (not his real name). Critically ill and severely underweight, he had been abandoned after his HIV-positive mother died during childbirth.
Since then, Puger and his friends — Yunus Prasetyo, 60, and Kefas Lumatefa, 53 — have cared for more than 80 HIV-positive children, many of them infants, whose parents died from AIDS-related complications or who were rejected by relatives.
They sold motorcycles, moved repeatedly after facing resistance from neighbors, and at one point lived on cemetery land. Only in 2023 did they settle in the unused school building in eastern Solo, though flooding from the nearby river remains a frequent threat. A second shelter in western Solo was donated in mid-2024 by the Bandung-based Sajiwa Foundation.
“The government does not have any HIV shelters,” said Yunus. “They have general shelters for the needy, but the staff there do not dare to care for children with HIV.”
Together, the two homes require about 60 million Indonesian rupiah ($4,655) a month for food, utilities, vitamins and basic salaries. Costs are met through private donations.
Living with stigma
Despite years of awareness campaigns, stigma remains pervasive. Dr Muhammad Saleem, Indonesia country director of UNAIDS, said discrimination persists “in healthcare, education and employment”.
To protect the children, the volunteers enrol them in different schools and keep their HIV status secret. Medication adherence is an ongoing challenge, complicated by side effects and mental health struggles.
“Often, they do not understand why they have to take medicine twice a day,” said donor Esti Sulardi. “They say, ‘Why should I take medicine when I am not feeling sick?’”
Still, there are victories. Of the more than 80 children cared for, 16 have been reunited with relatives after counselling. “After the extended family is educated on how to live safely with HIV-positive people, they become (more) open to accepting the children back,” Yunus said.
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