{"id":184232,"date":"2025-12-15T03:37:07","date_gmt":"2025-12-15T03:37:07","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/184232\/"},"modified":"2025-12-15T03:37:07","modified_gmt":"2025-12-15T03:37:07","slug":"living-with-stigma-state-inaction-what-its-like-for-some-of-indonesias-hiv-positive-kids","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/184232\/","title":{"rendered":"Living with stigma, state inaction: What it\u2019s like for some of Indonesia\u2019s HIV-positive kids"},"content":{"rendered":"

December 15, 2025<\/p>\n

SOLO, CENTRAL JAVA \u2013 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.<\/p>\n

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.<\/p>\n

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).<\/p>\n

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

\u201cWe found many pills hidden under her bed,\u201d said Mr Puger Mulyono. \u201cShe held them under her tongue and spat them out later,\u201d said the 51-year-old volunteer, whom the children affectionately call ayah, which means father in Bahasa Indonesia.<\/p>\n

Siti was the latest of the 26 residents at the two shelters who have died since 2012.<\/p>\n

Her life, and death, underscores the fragile lives inside these modest shelters \u2013 and the lack of consistent state support for people living with HIV in Indonesia.<\/p>\n

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\u2019s 13,700 facilities dispense the medication.<\/p>\n

\u201cAll 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,\u201d Ms Prima Yosephine, the Health Ministry\u2019s director of health surveillance and quarantine, told ST on Dec 4.<\/p>\n

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,\u00a095 per cent of those diagnosed to be on antiretroviral therapy, and 95 per cent of those being treated to achieve viral suppression.<\/p>\n

But progress is stymied by resource constraints and shrinking foreign support. In particular, funding for Indonesia\u2019s health programmes was hard hit by the Trump administration\u2019s freeze on foreign aid<\/a> in January 2025.<\/p>\n

Now, more than ever, the growing gaps resulting from funding cuts and a lackadaisical government response to HIV\/AIDS are being addressed by Indonesia\u2019s 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.<\/p>\n

\"Living<\/p>\n

Children playing cards in the corridor outside a classroom, in a repurposed school building in eastern Solo, Central Java. PHOTO: THE STRAITS TIMES<\/p>\n

In South-east Asia\u2019s 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.<\/p>\n

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.<\/p>\n

HIV advocacy groups there say the situation is not entirely dire.<\/p>\n

Ms Kiki Annisa, a programme manager at the Association of Positive Women Indonesia, a community-led network of women living with HIV, said: \u201cAbout 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.\u201d<\/p>\n

The bigger issue is uneven distribution of support, she added.<\/p>\n

\u201cFunds in Indonesia have not been distributed equally or fairly, as evidenced in cases where some of the high-priority or hot spot areas \u2013 like Jember in East Java province and Nabire in Central Papua province \u2013 are not getting adequate support,\u201d she said, noting the lack of resources with which to coordinate HIV-related programmes in the country.<\/p>\n

The story of Solo\u2019s 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 passed away earlier, and other relatives abandoned him.<\/p>\n

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 \u2013 of whom a quarter were infants \u2013 whose parents had died from AIDS-related complications or who were abandoned by relatives who could not support them.<\/p>\n

\"Living<\/p>\n

Shelter resident Budi (not his real name) plays defender in his school\u2019s football team. and wants to compete at the national level one day. PHOTO: THE STRAITS TIMES<\/p>\n

At first, the trio rented a room, then a house, selling their motorcycles to cover expenses. Donations trickled in \u2013 but resistance from neighbours soon forced them out.<\/p>\n

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.<\/p>\n

Only in 2023 did they finally settle in the unused school building in Jebres, in the eastern part of Solo \u2013 though here, they face frequent flooding when the nearby river overflows.<\/p>\n

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.<\/p>\n

\u201cThe government does not have any HIV shelters,\u201d said Mr Yunus. \u201cThey have general shelters for the needy, but the staff there do not dare to care for children with HIV.\u201d<\/p>\n

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

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\u2019s growing restaurant business.<\/p>\n

Despite two decades of HIV awareness campaigns, discrimination against people with HIV\/AIDS remains widespread.<\/p>\n

Dr Muhammad Saleem, Indonesia country director of UNAIDS, the United Nations\u2019 programme coordinating the world\u2019s response to the HIV\/AIDS epidemic, said stigma persists \u201cin healthcare, education and employment\u201d.<\/p>\n

\u201cGlobally, only about half of the number of children living with HIV (are) accessing care and services they need, despite availability of antiretroviral treatment,\u201d he said in a written reply to ST.<\/p>\n

To protect their charges, the volunteers place them in different schools. Neither their classmates nor their parents know about the children\u2019s HIV status.<\/p>\n

\"Living<\/p>\n

The school-turned-shelter in the eastern part of Solo, home to 19 HIV-positive children, is run by three volunteers, who depend on private donations to stay afloat. PHOTO: THE STRAITS TIMES<\/p>\n

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\u2019 26 deaths \u2013 including Siti, who was under the volunteers\u2019 care for 10 years \u2013 were due to the children secretly skipping treatment.<\/p>\n

\u201cOften, they do not understand why they have to take medicine twice a day,\u201d said shelter donor and business consultant Esti Sulardi, formerly CEO at a local state-owned enterprise. \u201cThey say, \u2018Why should I take medicine when I am not feeling sick?\u2019\u201d<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cAfter the extended family is educated on how to live safely with HIV-positive people, they become (more) open to accepting the children back,\u201d Mr Yunus said.<\/p>\n

\u201cWe commend them for their unwavering commitment to support children living with HIV in Solo,\u201d Dr Saleem said of the volunteers, urging the authorities to take a more active role in this regard.<\/p>\n

\u201cWhile 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 \u2013 government, civil society and private sector working together to ensure that no one is left behind,\u201d he added.<\/p>\n

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 \u201czero discrimination\u201d and setting 95-95-95 targets.<\/p>\n

Still, there are success stories.<\/p>\n

Lina (not her real name), 22, who was one of the volunteers\u2019 earliest charges, graduated from college and married an HIV-negative classmate. \u201cI had to inform the groom\u2019s parents about her status. His mother actually fainted when I told her the truth,\u201d recalled Mr Puger. The couple now run several convenience stores in Surabaya, East Java.<\/p>\n

\"Living<\/p>\n

Shelter resident Reni (not her real name), 17, studies hard to earn a culinary diploma and hopes to have her own business one day. PHOTO: THE STRAITS TIMES<\/p>\n

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. \u201cI want to play football at the national level one day,\u201d he said.<\/p>\n

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

These small, sweet victories offer hope as volunteers and community-led efforts continue navigating stigma, funding needs and an uncertain future for the homes.<\/p>\n","protected":false},"excerpt":{"rendered":"December 15, 2025 SOLO, CENTRAL JAVA \u2013 The squat, one-storey school building near the Bengawan Solo (Solo River)…\n","protected":false},"author":2,"featured_media":184233,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[134,5696,111,139,69,2935,116547,50469,116548],"class_list":{"0":"post-184232","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-health","9":"tag-indonesia","10":"tag-new-zealand","11":"tag-newzealand","12":"tag-nz","13":"tag-society","14":"tag-special-report","15":"tag-the-straits-times","16":"tag-worth-a-read"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/184232","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=184232"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/184232\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/184233"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=184232"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=184232"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=184232"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}