Ayu Oktariani. (Courtesy of goodreads.com)

In connection to World AIDS Day on Dec. 1, TheJakartaPost.com's Anton Hermansyah sat down with Indonesia AIDS Coalition campaigner Ayu Oktariani, who is also an HIV infected activist, to talk about AIDS education in Indonesia and HIV awareness.

Ayu was diagnosed with HIV and hepatitis C in 2009. She was infected by her late husband, an intravenous drug user. As a mother of a healthy daughter, she realized that she had to get past the emotional turmoil and move on. She eventually became an activist for awareness on both HIV and hepatitis C. She was a finalist in the 2014 Kartini Next Generation Awards. Her campaigning of the health minister through change.org was success in making PT Roche Indonesia lower the price of the drug pegylated interferon, on which it held the patent, to make it more affordable.

Question: How much HIV/AIDS awareness is there in Indonesia?

Answer: In my opinion, after 2012, HIV awareness improved because there was more information. But the incidence of infection is not decreasing. Even though awareness has increased, so too has the infection rate. The stigma attached to HIV is still prevalent here.

What facts about the condition are not widely known among the public?

Many people don't realize how the virus is transmitted. Some don't even know exactly what HIV is. They know it's a deadly virus, like a curse. They just learn about it from mouth to mouth, which deviates a lot. If they are asked about it, they just answer based on their own perception, which is wrong. HIV is a virus that attacks the body's immune system, period. From the beginning, the public understood that it had widely spread but they didn't understand the ways that it could spread (including through unprotected sex, childbirth and needle sharing).

From the ways it can be spread, which is the most common?

In recent three years it has been sexual intercourse, especially between heterogeneous couples -- from man to woman and vice versa. Prior to 2012, it was intravenous drug use. Infection among homosexual couples was also high. Recently, it is coming from heterogeneous couples and from mom to baby.

What is the main hurdle in HIV/AIDS education in Indonesia?

Indonesians have been conditioned to think that talking about sex is taboo. They just know that it is wrong to have sex outside of marriage. But we cannot control incidences of sex outside the home. It can happen between students, teacher and student, and siblings. Safe sex education that should be given to teenagers at an early stage cannot be done as schools reject the idea. They claim that educating students about sex and condoms is the same as condoning casual sex.

But we cannot ignore the fact that casual sex between teenagers happens. I don't have the number, but there are plenty of cases revealed in the news and social media. If casual sex cannot be prevented, we could at least suggest that it be practiced safely.

How should people living with HIV/AIDS (PLWHA) be treated?

According to the community, they don't want special treatment. 'We can eat, we don't need help walking,' they say. It is wrong to treat PLWHA any differently from other people.

PLWHA still face stigma. They are considered sick people with a contagious disease, sinners. Even the terminology used by the government is wrong. They are referred to as 'sufferers'. It is wrong to depict PLWHA as people who suffer.

Right now my team is struggling to promote the use of 'PLWHA' instead of 'sufferer'. Images in advertisements on TV or in magazines always give a negative image, someone who is sick and sad. It can be seen in AIDS Day advertisements.

We also have inspirational figures, people who have successfully self-medicated, HIV-positive women who have uninfected babies. The ads aim to make people pity us and nothing more. We should make smarter public communication.

What about medication?

Antiretroviral (ARV) drugs are now widely available in Indonesia, but not as much as in Europe or the US as brands here are limited. But PLWHA can get it freely in the hospital. If you are infected you can go to a referral hospital or public health center (Puskesmas). A list of places is available at the Health Ministry or you can ask around the communities.

What one needs to pay for is just supporting health tests, such as blood tests or treatment for any accompanying infections. Medication is mostly free and easily accessed. It is available throughout Indonesia.

How is the quality of medical treatment?

Every reference hospital has a working group (Pokja) that is well trained. But I cannot not deny that there have been cases in which the doctor or nurse still use incorrect terms or make discriminatory remarks, but they are individual cases.

An example of discrimination, like the use of 'sufferer'€™, is the way of discriminatively looking at the background of PLWHAs. There is a tendency to discriminate against people having an HIV test. Like the people who contracted it through jajan (sex with a prostitute) or prostitutes themselves. These people are usually discriminated against or judged as deviants by hospital staff. Also people who have difficulty getting recognition, such as lesbians, gays, bisexuals and transgenders (LGBT). When I tested positive, why couldn'€™t they just treat me without judging my background? But those are just minor cases; there are hospitals and Puskesmas with excellent services.

Do people know that an infected woman can deliver a healthy baby?

The thirst for information is lacking, even with my mother and among the people around me. Except among those who are close to the community and people participating in the 'Caring Citizens' movement or Puskesmas activists.

In future, what should be included in HIV awareness campaigns and what can the media do?

The dissemination of information on HIV has been carried out for 30 years, which is not a short period of time. Progress is slow, but I can'€™t say it has failed. I and other activists try to fill the gap and not limit ourselves to the communities but also engage the public.

The media could turn bad news into good news. I often research what topics the media focuses on regarding HIV and most media outlets just care about the numbers. How many are infected, how many women are infected and the number of LGBT infected. It is sexist, but maybe it is aimed at spicing up a story to make people read it, I don't know. I wish there were more smart media outlets that focused on the success of the programs. Ones that would run articles on how to protect yourself and how to treat PLWHAs; ones that don'€™t intentionally or unintentionally discriminate against PLWHAs. For example, there are a lot of infected women who can deliver a healthy baby and married PLWHA with an uninfected spouse who remains healthy.

Can you give us a brief rundown on the data?

I don't remember the exactly figures, but the Health Ministry presently estimates HIV cases at 500,000 to 600,000, but actual reported cases are just 150,000. There are people who get infected but don'€™t want to be tested or take medication. The Health Ministry releases data on HIV every three months, so the figures are current. (dan)(+)

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