Indonesia’s HIV-positive children face stigma, state inaction

SOLO, Central Java – The squat, one-storey school building near the Bengawan Solo (Solo River) appears unremarkable from the outside. Inside, rows of bunk beds line former classrooms, the blackboards and chalk replaced with simple shelves and medicine boxes.

This is home to 19 children born with HIV. In a second house across town live another 17 such youngsters. All depend on three volunteers, and a patchwork of private donations, to stay afloat.

When The Straits Times visited the school-turned-shelter on Nov 28, the children were mourning the recent death of 17-year-old Siti Safia (not her real name).

She had, unbeknown to her carers, stopped taking her antiretroviral (ARV) pills, resulting in a month-long hospital stay and complications leading to meningitis.

“We found many pills hidden under her bed,” said Mr Puger Mulyono. “She held them under her tongue and spat them out later,” said the 51-year-old volunteer, whom the children affectionately call ayah, which means father in Bahasa Indonesia.

Siti was the latest of the 26 residents at the two shelters who have died since 2012.

Her life, and death, underscores the fragile lives inside these modest shelters – and the lack of consistent state support for people living with HIV in Indonesia.

Indonesia has an estimated 564,000 people living with HIV as at 2025, according to the Health Ministry. About 65 per cent of these know their status, and just 255,000 receive ARV treatment, which is free in public health centres but unevenly available. Fewer than half of the country’s 13,700 facilities dispense the medication.

“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,” Ms Prima Yosephine, the Health Ministry’s director of health surveillance and quarantine, told ST on Dec 4.

That target is a global goal for HIV epidemic control, which aims for 95 per cent of people living with HIV to know their status, 95 per cent of those diagnosed to be on antiretroviral therapy, and 95 per cent of those being treated to achieve viral suppression.

But progress is stymied by resource constraints and shrinking foreign support. In particular, funding for Indonesia’s health programmes was hard hit by the

in January 2025.

Now, more than ever, the growing gaps resulting from funding cuts and a lackadaisical government response to HIV/AIDS are being addressed by Indonesia’s network of non-governmental organisations (NGOs), community-based organisations and individuals in a display of remarkable private goodwill and quiet heroism. These groups and volunteers provide essential services, advocacy and support in the face of limited resources, state inaction and high levels of stigma.

In South-east Asia’s largest economy, there are several hundred such groups involved in the broader HIV/AIDS response across Indonesia, but dedicated physical shelters are rare, likely fewer than a dozen.

These shelters are run by small set-ups like Rumah Aira in Semarang, Central Java, and Rumah Singgah Kebaya in Yogyakarta, south-central Java, as well as on-the-ground volunteers, like the ones in Solo.

HIV advocacy groups there say the situation is not entirely dire.

Ms Kiki Annisa, a programme manager at the Association of Positive Women Indonesia, a community-led network of women living with HIV, said: “About 40 per cent of HIV programmes in Indonesia are funded by the government, 40 per cent by the Global Fund, and the rest by local social security agency BPJS and others, including USAid.”

The bigger issue is uneven distribution of support, she added.

“Funds in Indonesia have not been distributed equally or fairly, as evidenced in cases where some of the high-priority or hot spot areas – like Jember in East Java province and Nabire in Central Papua province – are not getting adequate support,” she said, noting the lack of resources with which to coordinate HIV-related programmes in the country.

The story of Solo’s two shelters began in late 2012, when three volunteers stepped up to care for a toddler named Budi (not his real name), who was in critical condition and at 18 months was the size of a two-month-old baby. His HIV-positive mother died during childbirth, his father had died earlier, and other relatives abandoned him.

Since then, Mr Puger and his friends (and later on, business partners), Mr Yunus Prasetyo, 60, and Mr Kefas Lumatefa, 53, have taken in more than 80 HIV-positive children – of whom a quarter were infants – whose parents had died from AIDS-related complications or who were abandoned by relatives who could not support them.

At first, the trio rented a room, then a house, selling their motorcycles to cover expenses. Donations trickled in – but resistance from neighbours soon forced them out.

They moved again and again, from a rented house whose contract was not renewed to an attempted relocation blocked by protesting residents who threw furniture and other belongings out onto the street to a temporary structure on cemetery land.

Only in 2023 did they finally settle in the unused school building in Jebres, in the eastern part of Solo – though here, they face frequent flooding when the nearby river overflows.

The second shelter in the western part of Solo, a simple single-storey dwelling, was donated in mid-2024 by Bandung-based Sajiwa Foundation, a charity that provides affordable housing solutions for the needy.

“The government does not have any HIV shelters,” said Mr Yunus. “They have general shelters for the needy, but the staff there do not dare to care for children with HIV.”

Many of these children were rejected by state facilities, having already been handed over by relatives unable or unwilling to support them, he added.

Both homes need 60 million rupiah (S$4,655) in total per month for food, vitamins, utilities and basic salaries for caretakers. Most costs are covered by private donations, including from badminton star Jonatan Christie, and by the trio’s growing restaurant business.

Despite two decades of HIV awareness campaigns, discrimination against people with HIV/AIDS remains widespread.

Dr Muhammad Saleem, Indonesia country director of UNAIDS, the United Nations’ programme coordinating the world’s response to the HIV/AIDS epidemic, said stigma persists “in healthcare, education and employment”.

“Globally, only about half of the number of children living with HIV (are) accessing care and services they need, despite availability of antiretroviral treatment,” he said in a written reply to ST.

To protect their charges, the volunteers place them in different schools. Neither their classmates nor their parents know about the children’s HIV status.

Medication adherence is a constant battle, worsened by side effects such as nausea and fatigue, as well as mental health struggles. Four of the shelters’ 26 deaths – including Siti, who was under the volunteers’ care for 10 years – were due to the children secretly skipping treatment.

“Often, they do not understand why they have to take medicine twice a day,” said shelter donor and business consultant Esti Sulardi, formerly CEO at a local state-owned enterprise. “They say, ‘Why should I take medicine when I am not feeling sick?’”

Looking ahead, the volunteers hope to give their young charges a more secure home. The trio recently took out a 200 million rupiah loan to buy a piece of land next to the shelter in western Solo. There, they plan to build a more permanent shelter before the lease on the former school building expires in December 2026. The construction cost is estimated at 700 million rupiah, and the men hope to raise the money from private donors and possibly the state.

Of the more than 80 children sheltered by the three men in over a decade, 16 have been reunited with their families after relatives received counselling on living safely with HIV-positive people.

“After the extended family is educated on how to live safely with HIV-positive people, they become (more) open to accepting the children back,” Mr Yunus said.

“We commend them for their unwavering commitment to support children living with HIV in Solo,” Dr Saleem said of the volunteers, urging the authorities to take a more active role in this regard.

“While awareness campaigns and legal frameworks have brought some progress, enforcement remains a challenge and stigma persists. Addressing these issues requires a whole-of-society approach – government, civil society and private sector working together to ensure that no one is left behind,” he added.

Indonesia lacks a single, comprehensive HIV-specific law but uses ministerial decrees and local regulations, focusing on prevention, affordable ARV treatment and workplace protections, with national plans aiming for “zero discrimination” and setting 95-95-95 targets. 

Still, there are success stories.

Lina (not her real name), 22, who was one of the volunteers’ earliest charges, graduated from college and married an HIV-negative classmate. “I had to inform the groom’s parents about her status. His mother actually fainted when I told her the truth,” recalled Mr Puger. The couple now run several convenience stores in Surabaya, East Java.

Budi, the first child they rescued, is now an eighth grader (the equivalent of Secondary 2 in Singapore) who cycles to school and plays as defender in his football team. “I want to play football at the national level one day,” he said.

Another shelter resident, Reni (not her real name), 17, is pursuing a culinary diploma and dreams of opening a pastry cafe.

These small, sweet victories offer hope as volunteers and community-led efforts continue navigating stigma, funding needs and an uncertain future for the homes.