Her eyes welled up at the thought of her late husband who died four months ago. At 25, Cahaya is a single mother who runs a small store in front of her parent’s house in Jakarta.
She is uncertain about her future. She said she was not sure whether she would find another man in the future who would ease her lonely struggle.
The small-framed woman is HIV positive. But no one in her family knows she is, she said. “It was just between my husband and I. We used to be able to talk about it together.”
After giving birth to her second child two years ago, a doctor in a central hospital in Jakarta advised her to undergo a sterilization procedure because she is HIV positive. And so she did.
“The doctors said that I should be sterilized because my husband and I were both [HIV] positive,” Cahaya said, despite the existence of the PMTCT (Preventing Mother-to-Child Transmission) program that enables mothers to give birth to children without transmitting the virus to their child.
Cahaya, a homemaker before her husband died, contracted HIV from her husband. She did not know he was a former drug user when she married him. A month after they tied the knot, she fell pregnant. Nine months after the birth of her first child, the baby died of severe diarrhea. The doctor told her to get her blood tested. She found out she was HIV positive.
During her second pregnancy, Cahaya followed the PMTCT program, taking Anti Retrovirals (ARV) and undergoing a C-section, which was free under a government and National Aids Commission program. Her two-year-old daughter is healthy and HIV negative.
“We were concerned the hospital would make it hard for us to access the PMTCT program if we did not agree to the sterilization,” she said.
Two months ago, Cahaya met a fellow HIV-positive patient at the hospital when she was about to get her ARV.
The woman had just given birth to a baby and Cahaya asked whether she had been sterilized. “She said she hadn’t. I was so shocked. Why did the doctor tell me I had to be sterilized?” she said.
“I still have a long future ahead of me. If I meet someone, he will probably want to have children,” she said. “I am even thinking I might stay alone for the rest of my life and not remarry.”
Despite the implementation of PMTCT program some doctors in Indonesia are still advising HIV positive women to get sterilized. Oldri Shearli from the Indonesia Alliance of Positive Women (IPPI) said patients and doctors’ lack of awareness about women’s reproductive rights is the main problem.
There were 21,770 reported cases of HIV and AIDS in 2010, according to Health Ministry Data.
Around 25 percent of the people affected are women. More than 70 percent of HIV-positive women are in their reproductive age. The rate of mother-to-child transmission in 2010 is 2.9 percent.
The most common way HIV is transmitted is through sexual relations between heterosexuals (50 percent). HIV can also be transmitted by sharing needles or injection equipment with an injection drug user who is HIV-positive (40 percent), and 3.3 percent of HIV cases are transmitted through men having sex with each other.
Head of the National Aids Commission Nafsiah Mboi said doctors should no longer be advising HIV-patients to be sterilized.
Oldri said when HIV and AIDS had just entered Indonesia and the services for ARV treatment were not yet in place, doctors were advising HIV patients to get sterilized to prevent mother-to-child transmission of the disease. But with the publication of PMTCT guidelines from the World Health Organization, doctors should have stopped giving such advice by now.
Nafsiah said current studies have shown that normal delivery was recommended for HIV positive women who have undergone an ARV regime. “Unless there are signs the mother’s health is poor,” she added.
However doctors are still using their authority to advise HIV-positive women to be sterilized, not only in Jakarta, but also in Bandung and Bali.
In Bali, the Sprit Paramacitta Foundation, an organization focusing on HIV and AIDS issues, stumbled upon a woman whose pregnancy was terminated and who was sterilized.
At the time, the foundation was carrying out a survey on the PMTCT program in Bali. During a focus group discussion, a woman became emotional and told her story about her abortion and sterilization.
“Hani” was pregnant in 2007 and was distraught because her husband was having an affair with another woman while she was pregnant with his child.
The doctor suggested she abort her child and be sterilized, because she was HIV positive and already had two children.
“She was given a form to sign stating she agreed to be sterilized. She said she was so distraught at that time that she signed without really realizing what was happening,” Spirit Paramacitta director Putu Utami said.
The hospital representative told the foundation the doctors did so with the best intentions. “They said they wanted to prevent more children being born with HIV,” she said.
Her organization recommended the hospital inform its patients of all the choices available to them, and make sure their patients were in a stable emotional state when they made a decision.
Cahaya feels her rights as a woman to make informed choices about her body were violated. Instead of asking her opinion on getting sterilized, doctors talked to her husband.
“I was being examined and we were setting a date for the C-section.”
The doctor then called her husband to talk in private and told him Cahaya should be sterilized because they were both HIV positive.
Her husband was concerned they would face difficulties accessing the PMTCT help so he signed the consent form without her in the room.
“Later, I was summoned and they explained it to me,” she said. “My husband had already signed the papers.” While the doctor talked to Cahaya’s husband a week before the labor, “Diana”, in Bandung, said the doctors had only asked her husband to sign the consent form when she was about to give birth.
She said the doctors had suggested she should get an abortion at first. “The doctor said I had a moral obligation because I am HIV positive.”
Andi Yentriyani from the National Commission on Violence against Women (Komnas Perempuan) said the doctor’s advice to get sterilized could be considered as violence against women.
“This can be considered as violence when the information given is not complete and is conveyed in a way that scares people or makes them feel intimated, which in the end result in the loss of the feeling of safety,” she said.
“Everyone has the right to complete information so they can make an informed decision and be responsible for their decision. Every doctor should carry out that responsibility,” she said.
Nafsiah said doctors should be informed about PMTCT guidelines through the health ministry and professional associations.
The Health Ministry’s director general for disease control and environmental health, Tjandra Yoga Aditama, said there were no regulations stating doctors had to advise HIV positive women to be sterilized.
“The government guarantees that all programs related to HIV and AIDS are accessible for free,” he said.
Tjandra added that the government continued to inform the general public and doctors on how to handle HIV and AIDS cases.
“For example, there is a meeting today at Sulianti Saroso Hospital about HIV. Hundreds of doctors are attending. This is an effort to continuously inform doctors about the issue,” he said.
Cahaya hopes women in the future will never have to endure her ordeal. “Don’t force women to be sterilized. Women have the right to have a family, children and grand children,” she said with a quivering voice.
Prodita Sabarini, The Jakarta Post, Jakarta | Feature | Wed, November 10 2010