All over the world HIV infection seems to go hand in hand with stigma and discrimination. Indonesia is no exception to this. Although a secular nation, 87 percent of Indonesians self-identify as Muslim and there is evidence of an increasing conservatism among Indonesians. Though considered a tolerant and relatively liberal nation, conservative cultural practices and attitudes towards high-risk behaviour make it difficult to implement HIV prevention strategies such as condom promotion and widespread accessibility to sterile needles. Perhaps more importantly though, conservative attitudes and policies mean that many of the key groups affected by HIV face daily stigma and discrimination with tangible social and economic consequences.
In Indonesia, HIV is classified as a concentrated epidemic for most provinces. However, in the provinces of Papua and West Papua, HIV has spread to a generalised epidemic. The term concentrated epidemic means that high prevalence of HIV is concentrated within specific sub-populations. For Indonesia, these primary risk groups are injecting drug users (IDUs), sex workers, men who have sex with men (MSM) and transgender peoples. However, creating such discrete categories ignores the complexity of HIV and the many more individuals outside of these categories that are affected by HIV. These include clients of sex workers, partners of IDUs or sex workers, and children of parents engaged in high-risk behaviour.
Recent reports by UNICEF suggest children in particular are left behind in Indonesia’s HIV response. UNAIDS estimates there were between 17,000 and 22,000 children aged 0-14 years living with HIV in Indonesia in 2014 (2). The vast majority of these children infected with HIV are infected through mother to child transmission. This can happen either during pregnancy, childbirth or breastfeeding. Though pregnant women infected with HIV may take antiretroviral treatments (ARV) during pregnancy to reduce the risk of passing the virus on to her child, there are issues with noncompliance of ARV. Issues of mother to child HIV transmission are also further compounded by the fact that many pregnant mothers are unaware of their HIV status. Stigma and discrimination related to HIV means that many individuals avoid seeking medical treatment for HIV or delay checking their HIV status. Without intervention during and after pregnancy, WHO estimates that 15-45 percent of HIV-positive mothers will pass on the virus to their children.
Many children themselves may be unaware of their HIV-positive status until the virus has progressed. This has implications for life expectancy and the general health of these children. Early intervention with ARV treatment is incredibly important in preventing opportunistic infections, such as tuberculosis and pneumonia, and increasing the likelihood of a long and healthy life for a HIV-positive child.
Even for asymptomatic children who are unaware of their HIV-positive status, it is likely that HIV will still create an emotional and social burden. HIV-positive children are likely to have either one or both parents infected with HIV and possibly suffer trauma from parents or family members dying due to HIV. Children living with HIV might also be exposed to parents continuing to engage in high-risk behaviour associated with HIV, such as sex work or injecting drug use.
For HIV-positive children aware of their status, the sting of HIV-stigma and discrimination can leave lasting psychosocial consequences, as well as economic vulnerability. Just this month, there were reports of HIV-positive children orphans rejected for temporary accommodation in Solo due to HIV-stigma and community misconceptions about HIV mode of transmission. This is just one example of how HIV-stigma and misconceptions create daily economic burdens for affected individuals.
So what is being done to help children living with HIV? In short: not enough. The Indonesian government has not designed any specific programs aimed at HIV-positive children. Though the Indonesian government has continued to scale up HIV prevention efforts, including a 2013 national strategy to rapidly increase access to antiretroviral therapy, the Indonesian government’s focus continues to be on high-risk populations. Children with HIV do not fall into this category.
However, there are some community-based organisations focussing programs specifically on HIV-positive children. Lentera Anak Pelangi (LAP), run through PPH Aids Research Centre, provides harm reduction activities for children with HIV positive parents in Jakarta, targeted not only towards children and parents but also surrounding schools, neighbourhoods, religious leaders and community leaders. Yayasan Rumah Rachel (Rachel’s House) is another community-based organisation targeting children with HIV, providing palliative care services for children living with HIV in East and North Jakarta.
These and other community-centred service programs are demonstrating positive outcomes for their beneficiaries. Strengthened integration of community-based programs aimed at HIV-positive children is likely to yield better results still. With greater commitment by the Indonesian government on improving outcomes for children with HIV, and strengthened local-national partnerships, it is likely there will be an increasingly positive outlook for children living with HIV in Indonesia.(Anne-Marie Tyson)