December 2, 2025

JAKARTA – Life dramatically changed for Nining Ivana when she tested positive for HIV during a medical checkup for a job 21 years ago. She was 20 when she lost her job and had to face an illness she barely understood.

Her health gradually improved after getting free antiretroviral (ARV) medication from a nonprofit organization. But stigma has continued to shut her out of opportunities.

“I imagined working in a neighboring country, saving enough money and eventually moving to a more developed country,” she told The Jakarta Post on Friday. “But all of those were blocked because of [HIV].”

Even finding work at home was not easy: “Whenever I applied to some companies, I was scared there would be medical screening, including an HIV test.”

Health screenings for formal employment sometimes include HIV testing, whether openly or covertly, despite a 2004 Manpower Ministry regulation prohibiting employers from using such tests as a recruitment requirement and banning testing without consent.

Now, Nining has been working for the Positive Indonesia Network (JIP) since 2019, where her status is not something she must hide and she does not have to face discrimination at work. She now advocates for people living with HIV nationwide, while also serving as Jakarta coordinator for the Indonesian Positive Women’s Network (IPPI).

Women with HIV in Indonesia have been facing what experts call “layered discrimination” and mental burden from having contracted the virus, potentially blocking life opportunities as well as proper health treatment.

Mother’s burden

Another struggle faced by women with HIV comes from carrying the burden of transmitting the virus to their children.

Siti Damayanti, not her real name, learned she was positive with HIV in 2008 after her husband who later died, fell ill with complications from the virus. Her baby daughter later tested positive, prompting both to start ARV treatment, while Siti despaired and almost gave up entirely.

Years later, it broke Siti’s heart to tell her daughter the reason they must take pills every day; a reality the girl has struggled to accept even at 18 years old.

“It’s difficult for a child to accept this,” the 43-year-old told the Post on Friday.

Recalling the shock on her daughter’s face, she went on to say: “I always try to advise her, support her, so she doesn’t lose hope. None of this is her fault.”

Navigating daily life in a society where stigma against HIV is still rampant remains a challenge for Siti and her daughter. She has kept their status private, a lesson she passed on to her daughter by saying, “We never know if friends might use it against us.”

Siti, a community member of IPPI and social worker in a program promoting HIV education for sex workers in Jakarta, sees the government’s response to the rights of women living with HIV as inadequate. She hopes authorities will step up to ensure all women, including sex workers, can access their full right to fair access to health services.

“Don’t look down on us,” Siti called. “Open your eyes and hearts to understand the situation of women with HIV, and meet their needs as well as their rights to health, education and support.”

Layered vulnerability

Discrimination against women with HIV often comes from the people closest to them, such as their partners and healthcare workers, according to IPPI program manager Rizki Annisa Sari.

“Women are often questioned about how they contracted HIV, pressured to repent or even forced to resign from their jobs,” Rizki said during a discussion hosted by the Health Ministry on Nov. 25.

The hardship is multiplied by gender-based violence. IPPI recorded 76 cases of violence against women with HIV across 11 provinces in 2024. At least 48 cases have already been documented this year, with many believed to remain unreported.

An estimated 564,000 people in Indonesia live with HIV as of 2025, according to data from the Health Ministry, barely down from last year’s 570,000. Only about 365,000 know their status, and just 255,000 receive ARV treatment.

While HIV medication is free at all health facilities, access is limited. Nearly 94 percent of the 13,708 health facilities nationwide offer HIV testing, but less than half of them provide ARV.

The virus is most prevalent among partners of people with HIV, clients of sex workers and children born to HIV-positive parents. Of 2,264 pregnant women diagnosed in 2025, nearly 2,000 received preventive treatment.

“Our policy is to conduct HIV screening for pregnant women,” Health Ministry acting director for infectious diseases control Prima Yosephine said on Nov. 25.

She reasserted the Health Ministry’s commitment to accelerating HIV elimination by 2030, as the government has increased the state budget allocation for ARV provision.

“We know austerity measures are being pursued everywhere, but that doesn’t mean we can’t accelerate progress,” Prima said. “The key is working together with all sectors that share the same goals, so we can collectively work toward [achieving HIV elimination targets].”