TEMPO.CO, Jakarta-
Written by: Andita Listyarini
Ten years ago, Arya (not his real name) would never have thought he would find himself immersed in helping those in need of health assistance and moral support. The 24-year-old now works as a youth coordinator at a HIV/AIDS-focused NGO in South Jakarta. His advocacy began about two years ago, when he discovered that he too, like the people he helped, had been diagnosed with HIV.
The news struck him. But that did not defeat him. Instead, Arya became intrigued to join a local HIV community, where he met fellow HIV patients and piqued his interest in LGBT movements.
It was not an easy journey for Arya. Sex education largely remains a taboo in Indonesia, not just in schools but at home too. Parents are often too timid to talk about it, leaving young people to find their own means to fill in the information void.
"When I first found out that I had been HIV-positive, I wasn't fully aware of the disease, nor the risky sexual behaviors that entailed it," says Arya. "Then I started seeking information from a local NGO and that was when I found out the kinds of treatment I could get, including access to anti-retroviral drugs."
When Arya was in middle school, he knew that he was different from his cohort. Like any other teen at that age, he was curious to explore his sexuality. He began to believe that he was more attracted to boys but, he thought it would have only brought upon a calamity to his life had he been honest with everyone about it.
"I always denied it," Arya said. "I used to think I was so different from my friends and I became this reclusive person because I couldn't talk about this to anyone."
It is a common pickle for young, gay men in Indonesia. Arya decided to put off telling his family about his health condition simply because he was too petrified to do it. It took a great deal for him to muster up the courage to "come out" to his family about his sexual orientation, and today, he does not feel like going down the same road twice.
Arya's day of work now revolves around report writing, campaign managing, and website developing. Arya He frequently travels to remote parts of eastern Indonesia, where the HIV/AIDS prevalence rate is much higher than other parts of the country. There, he meets young, male HIV patients and educates them about the disease and its prevention methods.
Growing numbers
According to the latest data from the Ministry of Health, more than 13,200 new HIV infections were recorded between October and December 2016. The data also showed that 35 percent of those new cases occurred among men who have sex with men (MSM), making them the second highest group susceptible to the disease. Within the span of six years until 2016, there have been 13,063 HIV cases occurred among MSM. While new infections have been declining among intravenous drug users, the government sees a growing rate among MSM, which has gone up rapidly from 5.3 percent in 2007 to 12.8 percent in 2013.
The government has become increasingly responsive to the epidemic and now provides free testing and treatment, which is covered by the universal health care scheme, Jaminan Kesehatan Nasional (National Health Insurance), or JKN. Antiretroviral drugs are free, and though they are not a cure, they help control the virus, allowing people to live longer and healthier lives.
The scheme, which was first introduced in 2014, requires all Indonesian citizens to undergo a civil registration system, where they provide either a valid Kartu Tanda Penduduk or KTP (National Identification Card), or they can register through their family using a Family Card, or known as Kartu Keluarga (KK). Some see this as an impediment and therefore resulting in the lack of access to care. The government’s ambitious goal is to cover all 255 million citizens by 2019, but so far, more than 80 million people are still left out of the program due to, among other reasons, the bureaucratic registration system.
Jakarta and its sprawling job opportunities obviously attract people from across the country. And this, in turn, can either be a boon or a curse if they wish to gain access to health care. People from outside Jakarta can only register to JKN from their respective hometowns, thus affecting particular communities who may have fled their homes without being formally registered.
"About 60 percent of [transgender] in Jakarta do possess KTPs," says Ignatius Praptoraharjo, a researcher at the Atma Jaya Catholic University’s HIV/AIDS Research Centre. "But only 25 percent of them has valid Jakarta KTPs, making them the only ones eligible to access JKN."
The inflexibility of the care system renders some people to completely opt out from it. Transgender people, for instance, have commonly lost connection to their families hence making it more difficult for them to register and gain access to treatment.
Arya is enrolled in the scheme. But many of his friends, who are HIV-positive, gay or transgender, are not. Some of them, he says, have not even been tested simply because they are afraid of the potential results. Arya wants to change this. He thinks that, if two years ago he could be induced to take a test by fellow LGBT community members, then he can make a difference today. He was one of the lucky few. He got tested during the early stages of HIV, allowing him to buy some time and prevent the disease from getting even worse.
Is education key?
Lack of information is rife, even in urban areas of the country, where the population is expected to be more educated. Praptoraharjo believes that this exacerbates the stigma faced by HIV patients, particularly MSM and transgender people. Discrimination in health care is a global issue. UNAIDS has designated March 1 as Zero Discrimination Day and this year’s theme was dedicated to eliminating discrimination in health-care settings.
"Discrimination in health care is more commonly committed by the health workers, it's inevitable," says Praptoraharjo. "I believe it's because they are more exposed to the living conditions of HIV-positive people. But our study shows that the more they interact with HIV patients and familiarize themselves with the disease, the less pervasive the stigma is."
Ricky (not his real name), a friend of Arya's, once experienced some sort of prejudiced treatment from a health worker when he disclosed his sexual orientation. Instead of receiving proper treatment and advice in a counseling session, he was then lectured about Islamic values and how homosexuality is perceived as a sin. It is a new normal for Indonesians, considering the country’s massive Muslim population.
It is a daunting challenge for NGO workers to crack down on the epidemic and engage MSM to be more aware of the disease. With the advent of technology and a swarm of online dating sites, men can easily find a sexual partner without having to interact in person, Praptoraharjo said. The toxic social circle that MSM often find themselves in may hinder them from staying cautious. And this includes men who may be married or have female partners.
"When MSM engage in sexual activities, they are not always aware of the use of protection," said Praptorahajro. "It can be tricky because even though they have a good knowledge on HIV, their sexual behaviors are still risky."
There is an alternative to JKN for those who do not possess the necessary identification papers. Local NGOs in various provinces of Indonesia offer assistance for transgender people, vagrants or street children who have been estranged from their families to gain access to Jaminan Kesehatan Sosial (Social Health Insurance), a scheme established by the government to serve the poor and marginalized groups of people.
It may still seem like a long shot for the government to achieve a universal, inclusive, and reliable health coverage. Breaking down the stigma is hard, but it can be alleviated with education.
Arya, who divides his time between social work and a university degree in computer sciences, believes that things are improving. "People in urban areas like Jakarta, Bali, or Yogyakarta have now started talking about HIV/AIDS. I've also noticed the decreasing trend of stigma and discrimination perpetrated by health workers," Arya stated
Arya also stated his commitment in helping HIV-positive people who are in need. "As long as I encounter HIV-positive people who are in need, they're still my number one priority," Arya said.
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