“I’m 34 years old, I have a daughter, and I’m basically jobless. There is no way I am disclosing my HIV status to either husband or institution.”Mia – a underprivileged mother of one in Indonesia living with HIV
What You Need To Know: HIV and The Situation
What is HIV and AIDS?
The human immunodeficiency virus (HIV) is a disease that damages the immune system by infecting and killing the CD-4 cells, a type of cell that helps the body fight off infections. Over time, as HIV kills more CD-4 cells, the body is more likely to get various types of infections and cancers. Without treatment, HIV can progress to a serious condition known as the acquired immune deficiency syndrome (AIDS). At that point, the immune system will be far too weak to fight off diseases and infections.
HIV in Indonesia:
Mia is a 34 year old woman who works as an assistant teacher in a local Indonesian school. She is HIV-positive, but she insists on keeping this information to herself – even if that means she has to deal with the repercussions of the autoimmune disease (fatigue, shortness of breath, cough, fever, swollen lymph nodes, weight loss, diarrhea). The interview with Mia took part a few weeks after news broke that 14 children in Indonesia were expelled from their elementary school simply because they have HIV. HIV prevalence is still low in the general population, at 0.5%; however, according to the World Health Organization, Indonesia remains the country with the fourth largest number of new infections per year. An estimated 65% of people living with HIV in Indonesia come from outside the key affected population (sex workers, injecting drug users, transgender people, prisoners, and sexually-active homosexual men). Unlike in the United States, where not disclosing one’s HIV status to an intimate partner can lead you to be convicted of a class B felony, serving up to 25 years in prison, and mandated registration as a sex offender, the disclosing of sensitive medical information in Indonesia can save you from not affording tomorrow’s plate of rice.
“My husband is my main source of income. The reason why my daughter and I will be able to live until tomorrow is because he pays our bills,”Mia elaborates on her husband’s role as a provider for the family and hers as a caretaker.
Shocking Findings Regarding Antiretroviral Therapy (ART) In Indonesia:
According to the Indonesian National Database, it was estimated that by the end of 2016, only 10-20% of Indonesians with HIV were receiving the necessary ART therapy. Research has shown that people who have contracted HIV in Indonesia still face rampant stigmatization and discrimination in the workplace. Despite the necessity in needing ART to treat their HIV and halt the disease’s progress to AIDS, Indonesians fear that seeking support and help will lead them to be shunned from society. In essence, HIV carriers in Indonesia are fearful, and more dangerously, they are not NOT talking.
But Why? And What Does That Mean?
Views on HIV/AIDS remain polarized in Indonesia, where attitudes toward sex lean socially conservative. The negative stigma hence discourages people living with HIV/AIDS (PLWHA), much like Mia, from accessing essential healthcare services and taking a monthly visit to the clinic to collect antiretroviral pills (medication for HIV/AIDS) and consult with a doctor. When people refrain from accepting and disclosing their HIV status, they close off the opportunity or chance to get better and get supported. Moreover, as HIV becomes more or a chronic disease and PLWHA live longer, HIV disclosure can reduce sexually-risky behavior, transmission of the virus, and overall lead to the decrease in stigma associated with HIV. However, what happens when telling your partner or institution this sensitive information instead backfires, and rather than get the help you need, puts you in a precarious situation?
Unfortunate Cases of HIV/AIDS in Indonesia
Let’s Consider the Bioethical Implications of Disclosing and Not Disclosing Such Information
Before forming a guide and response to consider what can be done to improve the conditions for individuals living with HIV/AIDS and the general population, we must consider the bioethical principles and the multiple perspectives. It is extremely relevant to note that Indonesia and developing countries are extremely different to first-world countries. Besides from the religious nature of the country, the economy also sees around 10% of the population in poverty. In order to apply a fair judgement of the situation, we must under the context in which this issue exists (cultural and local factors), as well as value how bioethics considers human life, public health, and strongly held arsenal beliefs.
To Disclose or Not To Disclose? That is the Question!
What About the Bioethical Principles?
Autonomy: People should have the independence and autonomy to decide what course of action is best for their situation (of course, considering the law). Autonomy is a tricky slope to navigate because HIV disclosure has a potential to lead to HIV prevention and support, but also has links to privacy and confidentiality. We also must understand that autonomy must be considered in the context of different nations and cultures. For example, in the United States (a more individualistic culture) where people are independent and often self-sufficient (laws are clear and enforced, penalties are a lot harsher), it would be unacceptable to not disclose one’s HIV/AIDS status to an intimate partner. However, in Indonesia, when you rely on other people because the environment simply does not allow you to be more independent and successful (fighting against a system actively against you), it becomes a layered and far more difficult principle to navigate.
Non–Maleficence: No one would like to intentionally harm their coworkers, their husbands, their wives, or their children; however, some people do not have a choice. There are difficulties that people face just to protect themselves or get medication in Indonesia. The meaning and process of disclosure differ across settings and when stigmatization and discrimination is high, it becomes a choice to protect oneself or the ones you loved. This is an extremely difficult choice to make but in order to serve and help other people, you first must be safe from harm.
Beneficence: The concept of benefitting oneself can be seen from both choices. If one decides to disclose their HIV/AIDS status, it becomes easier for them to seek medication (ART), garner support, and it also relieves psychological burden. Meanwhile, not disclosing one’s HIV/AIDS status may also be advantageous because it means being free from discrimination, the fear of losing your job or husband, and being protected from the injustices and stigma of the disease.
Justice: HIV/AIDS status disclosure is central to debates about HIV/AIDS because oftentimes, it is an issue of human rights and livelihood. Is it fair to infect an innocent person with AIDS unknowingly? Most definitely not. However, what happens when you consider confounding variables like your low socioeconomic background, the fact that your daughter’s health and nutrition is on the line, etc? The line of fairness and equality is extremely blurred when discussing issues sensitive to a nation and individuals.
So, What Can We Do? A Response
A few months ago, I wrote an article for Jakarta Post, the local leading English-daily, on countering the stigma of HIV/AIDS. The focus of the article was on the continued and existing stigmatization towards HIV/AIDS and how the youth could help counter this discrimination. I also included a piece on how my organization, Kampoeng Sehat (Healthy Villages), was contributing to the fight of HIV/AIDS. I believe this article serves as an important preface towards solving this dilemma.
Read The Article Here!
Hence, this treacherous take on HIV/AIDS requires a grassroots behavioral change from all members of the community. Besides focusing on children and parents living with HIV/AIDS, intervention must also target schools, religious and community leaders and the political system. Only then will all levels of society understand HIV/AIDS transmission and treatment, as well as join efforts to reduce and prevent discrimination of PLHIV.Kaitlyn for the Jakarta Post – An Article on Combating the Stigma of HIV/AIDS in Indonesia
Stigmatized communities all over Indonesia being hammered by a double pandemic as discrimination worsens existing inequalities for people already battling a gruesome disease. HIV/AIDS societies are no exception to this reality. Especially with the current global pandemic further shunning them to obscurity, it is extremely important now, more than ever, to take steps to mobilize the whole population against the fight with HIV/AIDS. I do not think that ONLY campaigning for PLWHA to be more open on their status is effective or morally right because this might just cost them their children, their source of income, their money for tomorrow’s meal. Instead, I believe it would be more effective and long-lasting if we opened up the societal conversation regarding HIV and AIDS to reduce stigma from a grass-roots and national level. Getting only the government and PLWHA has proven to be ineffective, and it is time we bring about a change in the methods to reduce HIV/AIDS-related stigma. We have learnt a lot from the Horizons Research and Programs (findings from more than 10 studies in Asia, Africa, and Lain America over the course of 10 years from 1997 to 2007) and their efforts to change how we see HIV/AIDS. Intervention strategies based on research include:
- Help Institutions Recognize Stigma: It is important for people to improve their environment; however, to be able to do this they must acknowledge that stigma exists in their facilities. Participating in sharing data and talking about these issues help build support for stigma-reduction.
- Address Social Stigma and the Environment: Focus on developing and helping facilities and societies establish an environment that provide timely, appropriate, and humane care for people with HIV. We must establish strong policies and strengthen information dissemination.
- Respond to the Needs of Stigmatized Populations: Create a safe environment for people to seek help and disclose their status, especially in key populations. Learn more about efforts in Brazil to help those at an increased risk of HIV infection.
- Use the Media to Show that HIV/AIDS Has a Human Face: Use the media to create communication-for-social-change and empower young men and women to prevent HIV infection through critical discussion of social and cultural issues.
- Engage the Community: Opening up the conversation and having these hard discussions will help foster acceptance within families and communities.
- Expand ART: Increased accessibility towards treatment has a positive impact on stigmatizing attitudes and behaviors (especially on internalized stigma).
In short, we must ensure that everyone from your neighbors to medical professionals join this fight against HIV/AIDS. Only then, when people begin developing an open-mind and acceptance towards PLWHA, will it be safe for everyone to safely disclose of their status and seek the needs and rights they deserve.
Thank You So Much! How To Get Involved?
Thank you so much for taking the time to find out and read more on the bioethics of HIV/AIDS in Indonesia and how we can help reduce stigma and discrimination in developing countries.
I’m eager to find out from you whether or not you agree, disagree, or have some suggestions regarding the analysis of the whole situation and how to improve the conditions. Did any of these stories resonate with you? How different is it from your country? Do you have any suggestions on how we/anyone can play a role in combating HIV/AIDS stigma and joining this fight?
Please don’t hesitate to leave down any comments, ask questions, or give input on how we as a global community can help the world grow into a more open and healthy place!