More than two years have passed since the Global Fund Round 8 (GF R8) was initiated in Indonesia. Yakeba is one of the Sub-Sub Recipients (SSR) of the GF grant (through PKBI) in the Province of Bali. Since then, Yakeba has been able to reach out to high risk populations for HIV as well as establish a peer-driven support network for people living with HIV and AIDS in the regency of Tabanan.
When reading about HIV and AIDS all too often we are confronted with statistics. We learn about the number of people newly infected, about prevalence rates within certain populations, regions or countries and how many people have died from AIDS. While such statistics are necessary, they tell us little about the realities behind these numbers. Thus the idea of “notes from the field” is to tell the stories of real people and give a human face and voice to the epidemic.
This week, we will tell the story of a woman living with AIDS in the regency of Tabanan, lets call her Komang. Komang is in her mid twenties, widow and mother of a HIV positive three year old child. Komang’s husband passed away two years ago because of AIDS.
Komang first met her husband in high school. Back then she became his girlfriend, but they did not yet have a sexual relationship. After finishing high school in Tabanan and working for a year in East Java’s capital city Surabaya, Komang return to her native Bali and caught up with her high school sweetheart. They started a romantic relationship and soon after, got married. Komang soon realized that her husband had an alcohol problem, as he often went drinking with male friends at so called kafe (local bars, where sexual transactions with the waitresses take place) and came home drunk. She also suspected him of having affairs with women working at these kafe, but she felt she could do nothing about it. When Komang was three month pregnant her husband fell ill for the first time. He had to spend a couple of weeks in hospital. After that, he started getting sick all the time. At the hospital they recommended a blood test and he was diagnosed HIV positive, already having reached the stage of AIDS. Even though he was given medication, he passed away soon after. Just a couple of weeks before he passed away, Komang gave birth to a son. The doctors then suggested Komang take a test as well and that is how Komang found out about her own HIV infection.
Komang then started antiretroviral therapy (ART), but stopped taking her medication after a couple of months. Having seen her husband pass away from AIDS despite taking medication, she lost hope and did not believe that the drugs would prolong her life. Moreover, she felt discriminated against by her family and the neighbors, which made her feel miserable. Luckily, after being repeatedly counseled by an outreach worker of Yakeba, Komang resumed her treatment. When Komang’s son was one year old, they tested him as well and sadly the result turned out to be positive. Nevertheless, now three years old, he is still strong and healthy and not yet in immediate need of medication.
Apart from the emotional struggle of losing her husband and being diagnosed with a life threatening disease herself, Komang had to endure another struggle – that of discrimination. It manifested itself for the first time when her husband passed away and nobody wanted to wash his dead body, even though the ritual washing of the dead body is an essential part of Balinese custom when somebody passes away. It was only when an outreach worker of Yakeba gave accurate information to the family and villagers and demonstrated the washing himself, that people would join and perform the ritual washing. But discrimination did not end there. Once Komang disclosed her own HIV status to her parents-in-law (where she lived) they started avoiding her. They would not eat what she cooked, did not share plates and avoided touching her. Furthermore, the neighbors did not let their children play with Komang’s son. As a result of this, Yakeba’s outreach workers held various small gatherings in Komang’s village, talked to her in-laws and the local community leaders. Slowly but surely people started to understand more about HIV and AIDS and realized that there is absolutely no reason to be afraid of someone who is infected. Rather they learned, that embracing people suffering from HIV and AIDS is not only essential for the physical and emotional well-being of the affected but also for the sake of the community at large.
Komang’s experience of discrimination is anything but unusual. As ignorance and misconceptions about HIV and AIDS are still widespread within the community, people tend to discriminate against the ones who disclose their status or people perceived to be suffering from the stigmatized disease. Discrimination comes in many forms and is widespread in all sectors of society. Often society’s negative and discriminatory views are internalized by the affected, leading to low self esteem and negatively impacting their physical and psychical well-being. As a result people are reluctant to seek information or test and the interaction between people living with HIV and AIDS (PLWHA) and the health care system is hampered. This not only fuels the epidemic and enhances its socially damaging effects but is also highly concerning from a Human Rights perspective. Thus, Yakeba is trying hard to bring about a change and reduce discrimination and stigma against PLWHA .
Although most people with HIV and AIDS in the Province of Bali are still from “high risk groups”, an increasing number of “low risk women”, that is mostly married women who have had only one or very few sexual partners, are becoming infected. Komang is one of them. Like her, in most cases these women were infected by their husbands or boyfriends, who patronized sex workers. In epidemiological terms this could be an indication of a shift from a concentrated (within some risk groups) to a more generalized epidemic.
Our aim here is not to blame anyone, but rather to promote a more responsible sexual (and otherwise) lifestyle – taking into account all the complexities of sexuality and its embeddedness in local culture and religion. The community and its leaders have to open their eyes to what is really going on. Drastic times call for drastic measures, so we have to be willing to talk about things that many would rather not talk about. This alone will not halt the epidemic, but it is an essential step towards reducing its devastating impact.
Komang’s story is a story of hope. Having gone through very difficult times, she is now strong enough to help others who are only at the beginning of their tough journey. Encouraged by our outreach workers Komang has become a role model for other people living with HIV and AIDS. Her advice and example is of great value for them.
By Felix Neuenschwander