Baby Rivona is a 45-year-old mother of two who lives in Jakarta. She is a busy woman. As well as caring for her 3-year-old son, her role as the head of a nationwide advocacy group requires her to communicate with members from around Indonesia, meet with government departments and travel around the world to consult with international organizations such as the United Nations.
Ten years ago, Baby was diagnosed with HIV during a routine test required by her Malaysia visa. Her work permit was revoked and Baby returned to Jakarta with little money and no job. As she sat in a hospital waiting room for treatment, Baby looked around at fellow HIV and AIDS patients. Observing that many of them looked sick and gaunt, Baby told herself, “I don’t want to be like them.”
After reading every piece of information she could find on her condition and ensuring she received adequate medical care, Baby is now able to manage her condition so that she can lead a healthy life. As the national coordinator of the Indonesian Positive Women Network (IPPI), she is painfully aware that not all HIV-positive women in Indonesia are as informed and empowered to fight the disease as she is.
“We’re talking about people like me who can read the documents in English on ARV [antiretroviral] treatment and everything, but what about people who don’t know a word of English? The counsellors and the doctors do not always update their skills. How can they give their patients the current information?” Baby says.
She adds, “So people living with HIV think treatment is useless, they think you will die. The demand [for ARVs] is still not strong enough, because the information is not there.”
Around 24,000 people are taking antiretroviral drugs in Indonesia, which help to keep people with HIV healthy and reduce the risk of transmitting the disease. The Ministry of Health estimates this figure accounts for only 40 percent of those who need the medication.
Baby says that in spite of the government’s policy of providing ARV medication free of charge, “fees” or bribes are regularly charged for patients trying to access treatment. “If you want the services, you pay,” she says.
Aditya Wardhana, the coordinator of the Indonesian AIDS Coalition, adds that receiving any kind of medical treatment is made more difficult for people who are HIV positive because of discrimination within the health care system.
“We have 250 AIDS hospitals in Indonesia. And that’s sometimes an obstacle because when people [with HIV/AIDS] try to access treatment outside the AIDS hospital they get refused. The provider will say, ‘You should go to the other hospital,’ but maybe they don’t need any specific treatment,” Aditya says. “We need to tell our government that every hospital should be ready to treat people with HIV. Because besides the ART [antiretroviral therapy] and diagnostic tests, they don’t need any specific treatment.”
General hospitals that do treat those with AIDS often require HIV-positive patients to wait in special “isolation rooms” where they often have to wait longer than other patients to see a doctor, according to complaints received by the Indonesian AIDS Coalition and the IPPI.
Over the past few years examples of human rights abuses in the health care system have come to light with reports of the forced sterilization of HIV positive women.
“We began to hear of the situations in 2006,” Baby says, “but we did not really understand yet. Then in 2008 we started to understand why: some women living with HIV were saying when they were using the health services they had to undergo sterilization. We did a study. We talked to the then minister of health and we protested at the National AIDS Summit in Yogyakarta.”
Any medical procedure conducted without consent is considered a violation of human rights conventions that Indonesia has ratified, including the International Covenant on Civil and Political Rights.
Guidelines from the World Health Organization (WHO) that have been adopted in Indonesia recommend ARV treatment and, in some cases, a caesarean delivery as the best practices to prevent the likelihood of transmission of HIV from mothers to their babies. Such methods reduce the chance of a baby contracting HIV from its mother to below 5 percent, according to the WHO.
A report released last year by the Women of the Asia Pacific Network of People Living with HIV/AIDS surveyed 109 HIV-positive Indonesian women in 2011. Just over 40 percent had been asked, usually by a medical professional, to undergo sterilization and five women reported they did not have the option to decline the procedure.
Baby says improvements have been made, with the help of the current health minister, Nafsiah Mboi, who discouraged sterilization and reminds health workers of the WHO guidelines.
“We know they don’t force sterilization anymore,” Baby says, “but they still ask women many, many times to do the procedure.”
Nafsiah, who used to be the head of the National AIDS Commission, is described by those in the AIDS advocacy community as a strong leader willing to take action on HIV and AIDS. The minister believes a holistic approach is needed to combat the disease
“We are working on very comprehensive efforts to tackle all the problems,” Nafsiah says. “But first we must educate the youth about religion, morals, reproductive health and how to avoid drug addiction. We have too many young people engaging in risky behaviors, especially unsafe sex. The number of abortions is increasing.”
This can be made difficult by concerns among some religious communities over sex education. While last year’s National AIDS Commission report says that the Nahdlatul Ulama have assisted with outreach services to treat those with HIV and AIDS, another Islamic group, the Indonesian Council of Ulema (MUI), is less supportive of some efforts to prevent HIV.
The chairman of MUI, Amidhan Shaberah, told the Jakarta Globe, “We reject the use of condoms outside of marriage.” He explained that until now the MUI had not supported sex education but that its members were now trying to agree on requirements to decide whether a curriculum that met its guidelines would be permissible.
Aditya says that while views such as the MUI’s do make HIV prevention more difficult, organizations targeted toward specific communities affected by HIV and AIDS are able to operate effectively.
More difficult, he says, is reaching out to members of the general population.
“The problem is, the epidemic is already broader than we thought. Right now, we know that many housewives are infected. As the numbers increase, we don’t have any programs for them.”
Nafsiah agrees, saying, “What’s terrifying is the fact that more and more housewives are getting infected, mostly from their husbands, and these women could transmit their disease to their babies. We can save the babies from being infected if we can catch the infection early and put the mother on antiretroviral treatment immediately. Next year we plan to perform HIV tests on all pregnant women.”
Over 8,000 pregnant women are estimated to be infected with HIV/AIDS, based on 2011 Ministry of Health figures. The number of Indonesians living with HIV was around 370,000 in 2011, according to UNAIDS.
Around $69 million was spent in 2010 to prevent and treat AIDS, according to the National AIDS Commission, an increase of around 13 million since 2006. More than half of that comes from international funds.
Baby says that while more funding is always helpful, addressing HIV and AIDS in Indonesia is as much about attitude as it is about money.
“This is still a patriarchal culture. There’s discrimination, stigma, financial issues and a lack of knowledge that are causing this. The discrimination in the health system has gotten better over the past few years, but we want more. We want people with HIV to be treated like any other people. I used to wonder why God gave me HIV, but I think maybe it is so I can be a role model and fight for women on these issues.”