Indonesia

Ibu Mawar (not her real name) learned she was living with HIV after receiving a test during an antenatal care visit.

 “I was surprised, of course, when they told me. But I didn’t really doubt or deny the result,” she remembered from the Sorong City Health Office in West Papua. She immediately started treatment to prevent transmission to her son. “Even though I’m positive,” she said, “our child is not.”

In principle, since 2009 every pregnant woman receiving antenatal care in Indonesia should receive an HIV test. And every woman found to be living with HIV should receive medicines to prevent transmission to their babies just as Ms Mawar did.

But this isn’t yet the reality.

In 2022 more than one-third (37%) of all pregnant women in Indonesia did not get screened for HIV and just 18% of mothers living with HIV had access to antiretroviral therapy. There were an estimated 2800 new HIV infections among children that year.

But now stakeholders in Indonesia are mobilising. Not only will they scale-up prevention of mother-to-child HIV transmission services, but they will work toward eliminating vertical HIV transmission while assuring the health and wellbeing of women and children living with HIV. At the centre of this approach is the engagement of women, who comprise roughly one-third of the adult population living with HIV.

In June 2023 Indonesia established the National Alliance to End AIDS in Children. This partnership between government, civil society and international organizations seeks to provide access to health services and support for women and children living with HIV. It has committed to three main priorities. The first is advocacy for the needs of adolescent girls and children living with HIV. Second is promotion and dissemination of information on Prevention of Mother-to-Child Transmission (PMTCT), Early Infant Diagnosis, treatment literacy and comprehensive sexual education. And third is the empowerment of communities regarding issues pertaining to children living with HIV.

The Alliance’s first major initiative was an Elimination of Mother-to-child Transmission symposium—the first ever in Indonesia. Partners have embraced the World Health Organization (WHO) triple target of eliminating mother-to-child transmission of HIV, syphilis and hepatitis B by 2030. A series of sessions were delivered in-person and online. A total of 115 participants from the government, communities, academia, healthcare and media joined the EMTCT Symposium in Jakarta.

Dr. Laila Mahmudah, Head of the Neo Maternal Division at the Ministry of Health, underlined the importance of accelerating EMTCT efforts across the range of issues. She noted that currently 66% of pregnant women received hepatitis B early detection services while just 25% of pregnant women are tested for syphilis.

Multisectoral stakeholders and participants discussed strategies with participants from Malaysia and Thailand, which have both received EMTCT validation for HIV. Dr Anita Suleiman, Director of Disease Control of the Ministry of Health of Malaysia, pointed to the importance of effective leadership and health system governance for country-wide implementation.

“One of the lessons from countries that achieved EMTCT is that it is possible to end AIDS and vertical transmissions, especially in low-prevalence regions like Indonesia, through robust governance and good-quality performance. Indonesia can also achieve EMTCT by 2030, and I hope this symposium leverages the coordination efforts towards the elimination of HIV, syphilis and hepatitis B,” said Dr Shafflq Essajee, Senior Advisor, HIV, UNICEF New York.

However, it was emphasised that political commitment must be bolstered by community-led strategies to reach and retain mothers living with HIV. Community mobilization and community health workers are critical approaches. Ikatan Perempuan Positif Indonesia (IPPI), the national network of women living with HIV, also endorsed the Thai approach of providing free formula for mothers living with HIV in low-resource districts.

Ayu Oktariani, IPPI National Coordinator and a member of the National Alliance to End AIDS in Children reiterated her organization’s commitment to implementing the community-led strategies in support of EMTCT in the coming years.

“This Symposium means more than words I can explain,” said Ayu Raka from the Akar Cinta Kasih Foundation, a community organisation in Bali. “When I return to Bali, I will advocate for EMTCT with local multisectoral stakeholders and communities in my region. I am confident we can make a healthier society and improve health for all mothers and babies.”

UNAIDS Country Director for Indonesia, Krittayawan Boonto, promised the continuous backing of UNAIDS.

“We will continue to support not only mothers, but also fathers, in protecting babies from new HIV infections. I wish for Indonesia to become the fifth country in Asia Pacific to achieve EMTCT. But we can only do it with the leadership of communities,” she ended.

Thailand’s HIV response can provide important learning for other Southeast Asian countries, with the experience of having already reached 90-90-97 in the treatment cascade in 2022, on the way to the achieving the “triple 95s”. The country was first in the region to eliminate mother-to-child HIV transmission. AIDS-related deaths have declined by 65% since 2010. With support from Australia’s Department of Foreign Affairs and Trade (DFAT), UNAIDS helped organise for Thailand to share lessons it has learned in its HIV response with Indonesia through a south-to-south learning exchange mission of Indonesian delegates to Thailand.

On day one, the Indonesian Ministry of Health and Thai Ministry of Public Health delegates discussed the HIV epidemic, trends, and challenges in each country. They shared insights on HIV prevention, treatment and stigma reduction in the HIV response. The following day, the mission team visited community organisations— including the Service Worker in Group Foundation (SWING), a non-governmental organization working for sex worker rights, and the Rainbow Sky Association of Thailand (RSAT), an organization that offers sexual healthcare for men who have sex with men, migrants, people who use drugs, sex workers and transgender people.

Multidisciplinary care is provided in Thailand to people living with HIV and to key populations through community service providers, incorporating certified community counsellors, medical technicians and caseworkers at the community facilities, and through doctors, nurses, pharmacists and laboratory scientists through the telehealth system.

Indonesia’s delegates on the visit highlighted that they had found helpful areas to improve community engagement in their national HIV programme, with a focus on effectively addressing the barriers and limitations in the HIV response that are interlaced with stigma and discrimination across Indonesia.

“We learned how Thailand prioritised zero discrimination, one of which is developing an e-learning curriculum for healthcare workers to minimise stigma and discrimination in healthcare facilities,” said Dr Endang Lukitosari, who heads the National AIDS Programme of Indonesia’s Ministry of Health.

Thailand’s delegates shared experiences from their community complaint support and crisis response system. Health workers, communities and clients can use QR codes at various locations to report rights violations, promoting accountability and coordination between health facilities and community organisations.

The Ministry of Public Health of Thailand noted that community workers are actively involved in the HIV response throughout a robust system of accreditation for both individual community health workers and community organisations. There are health insurance options for all users, including three that can be accessed by migrants. These initiatives help create an enabling environment, led by the government, to connect communities with marginalised groups and tackle issues such as loss to follow-up.

Indonesia’s delegates noted the significance of community mobilisation in the HIV response and envisaged that by putting community in the centre they would reach the most marginalised and underserved groups across different islands and highlands in Indonesia.

“Thailand's comprehensive service delivery inspired me, especially through the Ministry of Public Health's accreditation and certification system for communities. This cooperative mechanism across the government and community stakeholders is the one we haven’t sufficiently addressed in Indonesia. Perhaps by applying this approach, we can minimise the gaps in the treatment cascade by ensuring we leave no one behind”, said Irfani from GWL-INA, Indonesia’s network of men who have sex with men and transgender people.

Over the five days, Indonesian delegates explored public HIV service centres and treatment facilities in Bangkok, Thailand and learned about how efforts of communities and government in HIV prevention and control could be streamlined and coordinated by enhancing the continuum of care and minimising loss to follow up. Notably, Thailand emphasised integrated, One-Stop, services as pivotal for a successful HIV response. Indonesia’s delegates sought a pathway for sustainability in the HIV programme through lessons from the continuity of HIV treatment services in Bangkok, which connects clients with community clinics and public health facilities through referral system and telehealth.

Delegates agreed that this learning mission highlighted key features in efforts to reduce stigma and discrimination, mobilise communities in HIV response, and improve access to quality healthcare by tackling barriers. In addition, the mission underscored efforts to support the delivery of client-centred services for key populations. The debriefing concluded with a commitment to continue the technical partnership on HIV between the two countries.

"I believe Indonesia can do it," said Krittayawan Boonto, UNAIDS Country Director of Indonesia. "Indonesia is in a similar situation to the one Thailand faced a few years ago. Thailand's strategies contributed to getting closer to their goals. I see potential in Indonesia to accelerate progress towards triple 95s. I hope these learnings from Thailand mission can advance the HIV response in Indonesia. UNAIDS Indonesia will keep supporting efforts to end AIDS by 2030."

Rosma Karlina and Bambang Yulistyo Dwi live with their two young children in the rainy hillside town of Bogor, south of Jakarta.

“Sometimes we go to museums to introduce the children to history or feed the deer at the Presidential Palace. It’s simple entertainment but can teach the children to learn to love even animals,” Ms. Karlina said.

If their family life is traditional, their work life is anything but. Ms Karlina is the founder and Director of Suar Perempuan Lingkar Napza Nusantara (also called Womxn's Voice), an advocacy and care organisation serving women and transwomen who use drugs. Bambang, popularly known as Tedjo, founded the Indonesian Justice Action Foundation (AKSI). Since 2018 his team has provided legal aid and support to people who use drugs, and advocated for their rights.

Their workdays are a mix of community organizing, paralegal paperwork and responding to distress calls. A client reported her husband’s domestic violence. When the police arrived at the house, the husband informed the police of her drug use and the police arrested her instead.

The organisations successfully advocated for a man to be released from a compulsory rehabilitation centre so that he could access HIV treatment. Otherwise, he would have gone three months without his medicines.

The organisations have witnessed many examples of women living with HIV being faced with extreme scorn. A police officer once threw a pack of sanitary napkins into a woman’s cell instead of passing it to her, saying it was because he was afraid to be near her.

“Since 2018 I have seen many rights violations perpetrated by law enforcement officers—abuse physically, psychologically and even financially,” Ms Karlina said. “They extort families to pay to enable their loved ones to go home.”

The Rosma Karlina of today—nurturer and fierce advocate—evolved from almost two decades of drug abuse. She has been to rehabilitation centres 17 times. Rock bottom came during an 18-month incarceration for heroin possession.

“My family paid a lot of money to the prosecutors, but I was still imprisoned. I lost custody of my oldest child. The judge thought I did not deserve to be a mother because I was a drug user,” she recounted.

Tedjo also evolved from addiction to activism.

“I did drugs between 1989 and 2015. It has been a long journey,” he reflected. “When my life was a mess, I hurt many people. It was not easy to prove that I was better.”

The couple are leading voices on how harsh criminal laws for drug possession and use lead to rights violations against people who use drugs while also lowering access to health services.

A 38-country legal and policy analysis by UNAIDS and UNDP found that 14 countries in the region have corporal or capital punishment penalties for the use or possession of drugs. Some states have condoned extrajudicial killings for drug offences.  In 2021 an estimated 12% of new HIV infections in Asia and the Pacific were among people who inject drugs.

 “The war on drugs has created a lot of stigma, and a culture that views an entire community as criminals. When we access healthcare, we get treated as bad people,” Tedjo said.

Regional Coordinator of the Network of Asian People who Use Drugs (NAPUD), Francis Joseph, explained that in the absence of legally conducive environments people don’t have access to appropriate services.

“Healthcare providers and law enforcement agencies treat them with violence and abuse,” he said. “So they don’t want to come out the closet and say ‘I have shared needles and syringes and I need an HIV test’. Because drug users are not welcome in our health facilities that leads to them going into the shadows and staying there.”

Lord Lawrence Latonio, a Community Access to Redress and Empowerment (CARE) partner and law student noted that Philippines also criminalises the possession of what are seen as drug paraphernalia. This means that peer educators who disseminate clean needles and syringes have to be watchful so they are not apprehended.

Fortunately advocates successfully lobbied for the country’s HIV and AIDS Policy Act of 2018 to include protections for healthcare workers who provide HIV services. Part of CARE’s work is legal literacy training so communities understand their rights. CARE also has a network of peer officers working in different regions to support members of key population communities and people living with HIV with seeking redress in cases where there have been rights violations.

Twenty-one countries in the region operate either state-run compulsory detention and rehabilitation facilities for people who use drugs or similar facilities. These are a form of confinement where those accused of, or known to be using drugs, are involuntarily admitted for detoxification and “treatment”, often without due process. Conditions have been reported to involve forced labour, lack of adequate nutrition, and limited access to healthcare.

In 2012 and 2020 United Nations agencies called for the permanent closure of these compulsory facilities. But according to a 2022 report, progress on this issue in East and Southeast Asia has largely stalled.

“UNAIDS is working with the United Nations Office on Drugs and Crime (UNODC) to support countries to transition from compulsory facilities towards voluntary community-based treatment that provides evidence-informed and human-rights based services,” said UNAIDS Asia Pacific Human Rights and Law Adviser, Quinten Lataire.

UNAIDS Indonesia is working with Womx'n Voice to pilot a multi sector partnership shelter and education program for women and children in Bogor. Interventions include social protection, legal support, mental health support, HIV and health education and accompaniment to services.

Ms Karlina called for increased investments in mental health care, poverty alleviation and education. “We need proper assessments to better look at each situation and come up with an effective solution. Prison is not the answer. If you see us as humans, you will take care of us as humans,” she insisted. 

Estimates indicate that in Indonesia in 2021, only 25% of the 19,000 children living with HIV received life-saving antiretroviral therapy and 2,400 children died from AIDS-related causes.

Despite global scientific breakthroughs providing more effective treatment for adults and children, for many children living with HIV in Indonesia access to antiretroviral therapy remains elusive.  Exacerbating the situation is the entrenched societal and gender inequalities that present barriers to women, adolescents and children to access quality prevention and care services.  

With many competing priorities, national and local commitment of resources to scale-up efforts to eliminate vertical transmission of HIV and increase ARV coverage among children living with HIV remain limited. This has resulted in insufficient investment in community-based services for women, adolescents and children living with HIV.

To reduce AIDS-related deaths among children, and ensure children and adolescents living with HIV have access to high quality comprehensive care and support, Indonesia must expand community-based services and community-led programmes tailored to the needs of these very vulnerable yet often left-out groups.

Lentara Anak Pelangi (LAP), an organization that provides HIV services, including psychosocial support, for children and adolescents living with HIV in Jakarta has seen some successes through their One Child One Life program.

“We want these adolescents to be the next generation of positive leaders and influencers who inspire other teens living with HIV” said Prof. Irwanto, founder of Lentera Anak Pelangi.

The One Child One Life program provides disclosure and post-disclosure support, mental health assessment and care as well as education.

“Lentera Anak Pelangi has supported my daughter since she was very young. LAP’s in-person and online activities have been very helpful for her. Through Sekolah LAP, my daughter has started to learn how to build her self-confidence and open her mind to learn more things. I also learned the meaning of this illness and find friends facing the same struggle and fight to continue to be healthy,” Explained the mother of one LAP beneficiary.

“My son and I have been greatly helped by LAP’s education support. During the pandemic, we often received sembako (staple foods). My son loves to be part of LAP because he gets to meets other teens who share similar circumstances. We also receive information on how to provide care for our family,” another mother said.

Through the One Child One Life program, children living with HIV have been supported to suppress their HIV viral load, return to school and participate in youth support groups.  LAP also supports children with special needs and supplemental nutritional support when required. However, their coverage remains small due to funding and human resource constraints.

“Science has made it possible to diagnose and treat HIV. We have come a really long way in 40 years. In Indonesia, we must eliminate vertical transmission of HIV and ensure that all children living with HIV access life-saving antiretroviral therapy and quality care including psychosocial support when needed.” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.”

UNAIDS Indonesia together with Lentera Anak Pelangi and other implementing partners continue to call for optimized investments in community-based services and community-led programmes for women, adolescents and children living with HIV. 

While the number of new HIV infections in Indonesia decreased by 3.6% in 2021 to around 27 000, the country remains one of the countries with the highest number of new infections in the Asia and the Pacific region. Pre-exposure prophylaxis or PrEP is a medication that is highly effective at preventing HIV infection so making it available to groups of people most vulnerable is a key priority.

“In the past, I independently searched for information about PrEP because a client asked about it. I am glad there is a PrEP training that allows me to receive comprehensive information that I can then share with other people,” said Temmy a community outreach worker who participated in a training course in Bekasi.

PrEP was rolled out in Indonesia in 2021 as a pilot project to provide a new HIV prevention option which may be more convenient for people at risk of HIV, and to reduce new HIV infections among key populations such as sex workers and gay men and other men who have sex with men. It began in 12 districts, before expanding to 21 districts in 2022, with the aim of getting 7000 people on to PrEP.

As part of the expansion, a second round of training sessions was conducted in August across nine cities in Indonesia: Bogor City, Bogor Regency, Depok, Bekasi, Tangerang, Batam, Balikpapan, Samarinda, and Sidoarjo. Over 120 services providers from 24 hospitals and 47 outreach workers from local communities took part.

The PrEP training for health providers and community outreach workers was conducted by the Ministry of Health of Indonesia in partnership with Kerti Praja Foundation, Padjajaran University, and the national MSM-TG Network (GWL-INA). It was supported by donors, including the Global Fund to Fight AIDS, Tuberculosis and Malaria, USAID-PEPFAR and the Government of Australia’s Department of Foreign Affairs and Trade (DFAT).

"With less than a decade to go before our goal of ending AIDS by 2030, we must prioritize efforts to scale up combination prevention programmes, such as PrEP. The piloting of PrEP is critical to kickstart policy and programme development on PrEP in Indonesia. The conduct of training for service providers and community outreach workers is an integral part of the pilot implementation to ensure adequate capacities to provide PrEP services to communities in need,” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.

The PrEP training sessions are held over two days and include discussions between service providers and outreach workers. The aim is to equip and improve the capacity of the service providers and outreach workers to provide good quality PrEP services.

“This PrEP training has increased my knowledge of the alternative methods to prevent HIV. After this training, our health service office can now offer this new method of HIV prevention to our clients. We hope that this will contribute to the reduction of new infection risk. Thanks to this training, I have become more confident in providing PrEP services in the future,” said Doctor Elly from Lambuk Baja, Batam Province.

Unlike the first series of training sessions, the second was conducted in person and engagement was much higher. The enthusiasm also led to more active follow up after the training. One of the health centres in Bogor City started to provide PrEP services a couple of days after the end of the course. They also directly approached communities about the benefits of PrEP and within a month PrEP uptake had increased by 15%.

“As with all aspects of the HIV response, communities play a key role in the success of PrEP implementation. Contribution from the community is especially vital in the context of the pilot implementation in Indonesia, as communities of key populations with a substantial risk of HIV infection are the main beneficiaries of the programme,” said Muhammad Slamet, National Coordinator of the MSM-TG network (GWL Ina).

“This is the first time I feel comfortable expressing my true identity," said Yogi one of the youth festival participants in Bali, Indonesia. "I am currently involved in this youth festival, and I feel safe being among new friends who are in a similar situation as me," Yogi added. "I also received new information about HIV as well as gaining access to counselling services that are a comfort.” 

In a conservative country like Indonesia, sex is considered a taboo subject. Whether with parents, teachers or other adults, discussing sex and sexual health with young people is strongly discouraged. Accessing comprehensive information on sex and sexual and reproductive health and rights (SRHR) is even more challenging for young key populations, who do not have many safe spaces for discussion and are not adequately empowered with knowledge due to marginalization and discrimination.

Data shows that the level of knowledge on HIV and the level of comprehensive sexuality education (CSE) among adolescents in Indonesia are still very low. According to the 2017 Demographic and Health Survey (IDHS), 82% of women and 83% of men have heard of HIV and AIDS. Unfortunately, only 14% of women and men aged 15-24 have comprehensive knowledge of HIV. The lack of comprehensive knowledge about HIV contributes to the low demand for and access to HIV prevention and testing services, making it more difficult to curb new HIV infections in Indonesia.

“I gained access to HIV-related services only after I had been diagnosed, so I was feeling quite hopeless then," said a youth participant in a focus group discussion held by Inti Muda, the national young key population network. "I used to think that once you are infected with HIV, you will certainly die, so I used to feel scared seeking help by going to HIV services,” the participant added.

With the intention of addressing the challenges experienced by young key populations in accessing health information and services, Inti Muda and UNAIDS Indonesia, with support from the Government of Australia’s Department of Foreign Affairs and Trade (DFAT), initiated a series of Youth Festivals in various cities in Indonesia.

These festivals provided young key populations with a safe and comfortable space for collective discussion, expression and learning about issues important to their sexual health and well-being. The event not only included education about HIV and SRHR, it also provided opportunities for young people the to show off their talents while raising the topic of HIV and sexual and reproductive health and rights. Moreover, youth participants were able to access free HIV testing on site, with youth-friendly counselling free from judgment and discrimination.

“The festivals allowed us to bring out our talents in public speaking, poetry reading, and storytelling towards HIV and SRHR issues. This showed that we can be empowered, creative and have talents to be leveraged,” expressed Febri, another participants in the youth festival in Jakarta.

Having activities tailored for young key populations and connecting young people with their peers to learn about HIV and SRHR contributes to the HIV response in Indonesia, as young people who are informed about their bodies are more empowered to protect themselves from HIV. This is especially crucial in Indonesia where young people (15-24) account for almost half of new HIV infections in the country.

“Educational methods or outreach activities that are too conservative sometimes can make youth reluctant to actively participate,” explained Sepi Maulana Ardiansyah, National Coordinator for Inti Muda Indonesia.

From February to April 2022, youth festivals were successfully held in 7 provinces in Indonesia, including Jakarta, South Sulawesi, Papua, Bali, North Sumatra, East Java, and West Java. Over 700 young people from key populations participated in these festivals and 140 participants accessed HIV testing services provided by Inti Muda in collaboration with local health provinces and Primary Health Centres.

"As we want to reach more young key populations as targeted beneficiaries, it is crucial for UNAIDS to be able to listen and believe in the approach that is used by Inti Muda Indonesia as a partner that is youth-led. This is done to ensure that youth empowerment, participation, leadership as well as activities and approaches are meeting the needs of young key populations,” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.

“Young people here don’t regularly access HIV services. I really want to invite my friends to get tested, but they are all so afraid. They don’t have enough information or support from their families and are scared about finding out their status,” said Andika Bayu Aji, a young person from West Papua, Indonesia.

The HIV epidemic among young people in Asia and the Pacific has largely been overlooked, even though about a quarter of new HIV infections in the region are among people aged 15–24 years. The vast majority of young people affected by HIV in the region are members of vulnerable populations—people living with HIV, gay men and other men who have sex with men, transgender people, sex workers and people who inject drugs.

Like many countries in the region, Indonesia’s HIV infections among young people, which make up almost half of new infections, are attributed to stigma and discrimination, poor educational awareness of HIV, lack of youth-friendly services and social taboos.

“Young people far too often experience stigma and discrimination in health-care settings. Health-care workers are first-line responders. If the services are bad, young people won’t use them and they will tell other young people not to use them. We are limited by which clinics we can access because many, if not most, are not youth-friendly,” said Sepi Maulana Ardiansyah, who is known as Davi and is the National Coordinator for Inti Muda, the national network of young key populations in Indonesia.

A recent study conducted by Inti Muda and the University of Padjajaran found that the willingness of young people to access services in provinces like West Papua was very low, mainly due to the lack of youth-friendly services and the poor understanding of key population issues by health-care workers. Young people often face difficulty accessing services because of the remoteness of clinics and hospitals and encounter barriers such as the age of consent for testing.

Stigma and discrimination, and especially discrimination from health-care providers, discourages many young key populations from accessing HIV services. Concerns about privacy and confidentiality are some of the main challenges. Additional obstacles include that the opening hours of public clinics are often ill-suited to people’s daily routines, and the assumptions and attitudes of health-care workers can be judgemental, especially on issues around sexual orientation, gender identity and mental health.

Between 14 and 18 March, Inti Muda, with technical support from Youth LEAD and UNAIDS, organized a sensitization training of health-care workers in two cities, Sentani and Jayapura, in the West Papua region. More than 50 health-care workers participated. A few days before the training, Inti Muda organized a festival for more than 80 young people, joining in an effort to engage young people in the HIV response and generate demand for access to HIV services.

“Prior to this training, I didn’t know about the different needs of key populations, which hinders our ability to reach them. We learned about important techniques for reaching young people, such as providing youth-friendly counselling, digital interventions and encouraging them to get tested,” said Kristanti, from the District Health Office of Jayapura.

“I learned that the needs of young people are diverse. The training will allow us to improve our services to become youth-friendly, which is now our main priority,” added Hilda Rumboy, a midwife in charge of the HIV Services Department at the Waibhu Primary Health Centre.

The training and festival were supported by the Australian Department of Foreign Affairs and Trade (DFAT). The recent investment of AU$ 9.65 million set aside by the Australian Government from the sixth replenishment of the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), including DFAT funding of AU$ 2 million previously committed to UNAIDS, is aimed at reducing the annual number of new HIV infections among key populations in Cambodia, Indonesia, Papua New Guinea and the Philippines.

“Ensuring young people and vulnerable groups have access to accurate, digestible information about how to prevent HIV, and that testing facilities are cheap and accessible, is crucial to ending the AIDS epidemic. We are proud to work with local communities and UNAIDS to increase availability of information on HIV, improve the reach and quality of medical services and encourage young people and vulnerable groups to get tested,” said Simon Ernst, Acting Minister Counsellor for Governance and Human Development at the Australian Embassy in Indonesia.

The training is based on the manual developed by Youth LEAD in 2021, which was financially supported by the Global Fund’s Sustainability of HIV Services for Key Populations in Asia Programme and the UNAIDS Regional Support Team for Asia and the Pacific. Under the DFAT grant for the next two years, Youth LEAD will expand the training to two more countries, Cambodia and the Philippines, supporting networks led by young people in the respective countries to roll out the training.

“Young people still encounter many challenges that prevent them from accessing the life-saving health care they need. The UNAIDS Country Office for Indonesia is working closely with the UNAIDS regional support team and DFAT to ensure that networks led by young people have the capacity and leadership capabilities to take control of the HIV response and to have direct involvement in creating safe spaces where young people can access HIV services free from stigma and discrimination,” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.

“Throughout the COVID-19 pandemic, I started seeing people around me getting laid off and many struggled to find new jobs. Many people, myself included, started to consider starting our own businesses to sustain our livelihoods in this challenging time,” said Abraham, who is a member of a young key population community in Jakarta, Indonesia.

People in vulnerable groups have been facing huge hardships during the COVID-19 pandemic. According to a survey conducted by the Crisis Response Mechanism Consortium in 2021, 79% of lesbian, gay, bisexual, transgender and intersex respondents were not working owing to the COVID-19 pandemic.

As an effort to support the livelihoods of people living with HIV and key populations, the International Labour Organization (ILO) and the UNAIDS Country Office for Indonesia partnered to conduct a training programme for more than 40 participants on fashion design and production and entrepreneurship from July to November 2021.

“As soon as I heard about this training, I was immediately intrigued because I am interested in fashion and I’m always open to try new things,” said Abraham, who was one of the participants of the training, which was facilitated by the Yayasan Rame Rame Jakarta and Kami Latu Initiative nongovernmental organizations. Classes, both online and face to face, were given on colour theory, pattern development, product development, strategic marketing, financial management, product story-making and product-making.

“I was very excited to be a part of the training and I had a lot of fun! The lessons were very useful for someone like me who is interested in starting my own small business, especially through e-commerce platforms. I gained business skills that are vital to entrepreneurship, such as marketing, calculating profits and understanding our products,” reflected Abraham. “And I also enjoyed that there were some practical sessions where we learned how to use the sewing machine to make accessories and to be creative in refurbishing traditional fabrics or plain old materials to create new improved fashion items.”

During the training programme, Abraham made earrings, bracelets and clothes alongside other enthusiastic participants. The camaraderie of the participants was strong, especially as they gathered for a fashion show and photo shoots to display their creations. Abraham stressed that these kinds of trainings are beneficial for key population communities and that, “While such training isn’t exclusively needed for key populations, it isn’t always the case where trainings provide a safe space to express oneself freely without fear of judgement.”  

In addition to participants from communities of people living with HIV and key populations, workshops were also held for women in two villages in East Nusa Tenggara, namely Nggela and Manggarai Barat. The workshops provided them with skills that complement their traditional cloth (tenun) weaving, such as design skills to develop fashionable products using Indonesia’s traditional fabric and entrepreneurship skills, in an effort to improve their incomes and livelihoods.

Krittayawan Boonto, the UNAIDS Country Director for Indonesia, said, “As we enter the third year of the COVID-19 pandemic, vulnerable communities, such as people living with HIV and key populations, still need continued support and assistance to recover from economic hardships.”

In 2022, UNAIDS and the Yayasan Kusuma Buana nongovernmental organization will work together to ensure the participation of people living with HIV and key populations in the entrepreneurship trainings. Ms Boonto continued, “The entrepreneurship trainings offered through this joint United Nations project provide opportunities for vulnerable populations to apply their talents and find creative solutions to overcome challenges.” 

The training programme is part of the activities under the United Nations COVID-19 Response and Recovery Fund for Employment and Livelihood, implemented jointly in Indonesia by ILO, UNAIDS, the United Nations Development Programme and the Office of the United Nations High Commissioner for Refugees.

“This is the name I identify with, and I was determined to have it recognized legally,” said Dimas Cahya (his real name isn’t used in this article), a transgender man from Medan, Indonesia.

Medan, a city of more than 2.4 million people, is a long way from Indonesia’s capital, Jakarta. In Jakarta and Java, Indonesia’s most populated island, many transgender people have successfully changed their legal name to match their gender identity. However, this had never been done in Medan. Similar to the rest of the country, Medan is conservative, with lesbian, gay, bisexual, transgender and intersex (LGBTI) people and issues deemed “immoral”. This was the challenge that Amek Adlian, the paralegal assigned to this case, had to face.

Mr Amek saw Mr Cahya’s strong will and determination and started on research on the process of legally changing one’s name. “I wanted to get all the steps right, from gathering the required documents to preparing for the court hearing. I used my connections to consult with friends who have gone through the process in Jakarta, and got some very useful tips,” he said.

Unfortunately, not everyone who was consulted was supportive or helpful. Mr Amek recalls meeting with a legal aid organization in Medan where Mr Cahya was asked invasive questions, leaving them feeling discouraged and ridiculed. “We reached out for legal advice, but instead we got judgements,” Mr Amek said.  

Despite that, Mr Cahya’s determination never faded, and after more consultations with people in Jakarta, Mr Cahya and Mr Amek decided to go through with the court process to apply for the name change, citing “bullying” as the reason for the request. The court process stalled due to incomplete documentation. The court required an official document that shows the preferred name for Mr Cahya. “We were scrambling around looking for something that the court would accept. I asked friends in Java for their guidance, but they had never been asked for such a document before. I feared that this was an effort to complicate our case,” said Mr Amek. Eventually, they submitted a certificate from a public-speaking training that Mr Cahya had just participated in, and, unexpectedly, this certificate was approved.

“Facing the judge was nerve-wracking. The judge stressed that my request to change my full name (as opposed to just the spelling), would “erase my identity”. I had my mother with me as a witness, and she was also very nervous, despite us having briefed her prior. It was a such a relief and a surprise that the judge did not dig out any information about my gender. He stayed out of LGBTI issues completely,” Mr Cahya said.

After a six-week court process, their application was granted by the Medan District Court, and Mr Cahya became the first transgender man in Medan to legally change his name to match his identity.

Mr Cahya is not unfamiliar with being first: he was also the first transgender man to undergo medical transition in Medan, a process which came with its own set of challenges. Despite the many obstacles throughout the whole process, Mr Cahya’s optimism never faltered. “If it had not been approved, I would simply try again in Jakarta,” he said. This is only the beginning of his journey. “Next for me is to change the gender on my identity card,” he said, as his current identity card still uses the gender assigned to him at birth.

The whole process was supported by the Crisis Response Mechanism (CRM) Consortium, which is a consortium made up of the UNAIDS Country Office for Indonesia and four civil society organizations (Community Legal Aid Institute, Sanggar Swara, Arus Pelangi and GWL INA) whose mission is to respond to and mobilize resources for LGBTI emergency crises. Mr Amek himself is a paralegal with the CRM Consortium as well as a community organizer for Cangkang Queer, an LGBTI community organization based in Medan. 

Mr Amek credits the CRM Consortium for supporting this work. “Not only did CRM fund the process, but they also capacitate us as paralegals to be able to do such work and learn from each other. For me, learning from other cities was very useful. Now that Medan has done it too, I am happy to share my own lessons with paralegals working with LGBTI communities,” he said.

“Transgender communities are one of the most vulnerable groups in Indonesia. Legal recognition in the form of an identity card, particularly one that matches with the person’s true identity, is a human right that sadly is not enjoyed by everyone equally. This success gives us hope that progress is possible despite the unfavorable environment we are in,” the UNAIDS Country Director for Indonesia, Krittayawan Boonto, said. 

Since Mr Amek and Mr Cahya’s experience is the first in Medan, it is no surprise that some transgender men and women have reached out to them to discuss the process of name change, medical transition, etc. Mr Cahya and Mr Amek both agree that the first and most important step is self-acceptance. “The process will be difficult, especially in a country like Indonesia where we are not yet embraced,” Mr Amek said.

Mr Cahya echoed this sentiment, adding, “You should never give up. Set targets for yourself and remember that despite the challenges, you should not assume the worst will happen.” Mr Cahya’s infectious optimism gives light and hope to the lives of gender-diverse people all around the country beyond his hometown of Medan.

“Communities must be allowed to sit in the driver’s seat and take control of their lives. They are not passengers that sit idle, but leaders capable of making changes,” said Aditya Wardhana, the Executive Director of the Indonesian AIDS Coalition (IAC). This is the motto that he lives by, a motto that drives the work of IAC and how communities and civil society are meaningfully engaged in the HIV response in Indonesia.

IAC is a community-led organization based in Jakarta and was recently appointed the second community Principal Recipient to implement the Global Fund to Fight AIDS, Tuberculosis and Malaria’s (Global Fund) grant for HIV in Indonesia for 2022–2023—a feat, since only a handful of community-based organizations nationally or regionally hold Global Fund Principal Recipient status.

“Often, communities are seen as beneficiaries of programmes or as patients, not as decision makers. The IAC has always strived to shake up this dynamic. We believe that being a Principal Recipient will give us greater control over the issues that impact our communities and will set the direction of the national HIV response that puts communities at the centre of it,” explained Mr Wardhana.

In Indonesia, there are still significant gaps in the HIV response. Treatment coverage is low, with only 26% of people living with HIV on treatment, prevention is still lagging and stigma and discrimination remains high. IAC has identified three priorities to improve the HIV response in Indonesia, which include recognizing community health workers as health workers, creating more sustainable financing to reduce reliance on external donors and reforming laws and policies that discriminate and lack redress mechanism for victims of discrimination.

Networks of people living with HIV deliver life-changing services to those most affected and provide support for adherence to treatment, prevention and other essential health services. The involvement of civil society has been crucial in successfully advocating for sustainable financial resources, improving HIV programming and advancing human rights.

Over the next couple of years, IAC will work on these priority issues with the support of civil society organizations, United Nations partners and other stakeholders. IAC will continue to manage the human rights and community system strengthening programme, supported by the Global Fund and the Ministry of Health. Community system strengthening and community-led monitoring are integral parts of the HIV response. The programme ensures that community-based organizations play an active role in monitoring access to services, community programme quality assurance and human rights violations.

Since the organization’s foundation, the UNAIDS Country Office for Indonesia has been an ally and key partner, supporting IAC throughout the Principal Recipient selection process. “We know how important the role of communities is at all levels of the HIV response. We will continue to support IAC by providing technical assistance and capacity-building, working in collaboration to promote the meaningful engagement of communities and civil society in the HIV response,” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.

IAC, with support from the United Nations Population Fund in Indonesia, will soon establish a peer-led HIV prevention programme for female sex workers, offering differentiated service delivery to increase the uptake of HIV prevention services. Through the programme, they will also empower communities through capacity-building initiatives to drive the greater involvement of civil society in decision-making, especially in forming policies that directly impact the health and well-being of communities and vulnerable populations. Moreover, IAC plans to integrate gender-based violence screening into its outreach programmes. A human rights-based approach is essential to ending AIDS as a public health threat. This approach will create an enabling environment for successful HIV responses and affirms the dignity of people living with or vulnerable to HIV.

IAC will be responsible for managing US$ 17 million to implement the above programmes, with eight organizations across Indonesia as subrecipients.

“We will dive deep into these challenges and hopefully change the landscape of the HIV response. We believe that a more participatory approach will re-energize communities and remind them why HIV is still important and how programmes designed by communities for communities can save lives. This is what we will work towards; this is how we will end AIDS by 2030,” said Mr Wardhana.