SANTIAGO, Chile — Hours after Francisca gave birth to her first child, a midwife came into the recovery room and bluntly informed her that she would never have children again. She had been sterilized, unknowingly, during her cesarean delivery. Francisca was HIV-positive and only 21.
The young woman from Curico, a rural town in southern Chile, was diagnosed with HIV during routine exams early into her pregnancy in 2002. She immediately began treatment to avoid mother-to-child HIV transmission, but throughout her pregnancy no one in the local hospital counseled her on what it meant to be HIV-positive, the potential risks of transmission to her baby or the possibility of sterilization, claims Francisca, which is not her real name.
“As I was about to give birth, the nurse scolded me, telling me I was irresponsible for having gotten pregnant with HIV, and asking why I hadn’t aborted. It was horrible,” she said.
Even though Francisca went into labor before a programmed cesarean surgery, the doctor on shift that night nevertheless operated on her under general anesthesia. She woke up with a healthy, HIV-negative baby boy, and sterile.
Two NGOs brought her case to the Inter American Human Rights Commission in Washington. It is up to the court to decide whether the Chilean government failed to protect her from being forcibly sterilized.
There are about 3,500 women in Chile with HIV or AIDS, many of whom face widespread abuse in public health centers, discrimination and sterilization without consent, according to a report “Dignity Denied: Violations of the Rights of HIV-Positive Women in Chilean Health Facilities,” published last month by the New York-based Center for Reproductive Rights and the Chilean NGO Vivo Positivo.
“Sterilization without consent or under coercion occurs with enough frequency and throughout the country to be considered systematic,” said Suzannah Phillips, primary author of the report, which included interviews with 27 HIV-positive women in five regions of Chile. “It’s not an active government policy, but it is the result of government omission and not implementing its own guidelines.”
Government health officials did not respond to repeated requests for interviews.
One-fourth of the women the center interviewed who had been sterilized said they had made a fully informed and voluntary decision. The rest said they experienced directive counseling, misleading or incomplete information and sterilization without their knowledge or consent during other procedures, especially during cesarean deliveries.
In 2000, the government issued guidelines establishing counseling and written informed consent prior to sterilization, but as Francisca’s case reveals, health professionals do not always stick to regulations.
“Today women with HIV can decide if they want a normal delivery or a cesarean, depending on their condition. But many women, especially in rural areas, don’t know that. Doctors tell them their babies will be HIV-positive if they don’t undergo a cesarean, and they won’t do the cesarean if the women don’t agree to sterilization. That’s how they scare women,” said Sara Araya, head of the women’s department at Vivo Positivo.
Chile has taken major steps to address the HIV/AIDS epidemic. It adopted a national plan for the prevention, testing and treatment of HIV/AIDS that includes specialized multi-disciplinary teams in hospitals and universal access to antiretroviral treatment. Currently more than 80 percent of people with advanced HIV infection are receiving antiretrovirals.
But this has neither guaranteed quality health care nor halted discrimination against HIV-positive patients.
Such was the case of Matilde, a 36-year-old Peruvian immigrant in Santiago who tested positive for AIDS in 2003. (Matilde is not her real name. Neither Francisca nor Matilde wanted their names published because of the stigma associated with HIV.)
A year and several hospitalizations later, Matilde’s viral load was undetectable, and given the low risk of mother-to-child transmission, she and her partner decided to have a baby.
Access to treatment and attention by specialized medical staff working with HIV/AIDS patients is usually not the problem. The lack of attention and humiliating treatment comes in the maternity wards, labs or doctors’ offices, where women go for their regular checkups or to seek help for other health problems.
“A number of women are made to wait until all the non-HIV patients are treated first. Or they may be turned away entirely because health care professionals don’t want to touch them. One woman was told not to hug or kiss her baby because she would infect him,” said Phillips.
When Matilde would go to routine check-ups at the hospital, the staff there “instead of supporting me, asked me why on earth I wanted to have a baby, if I didn’t know that I was bringing a sick child to the world and that I would live a short life. What they were subtly telling me was that I should have aborted,” she said.
Three months into her pregnancy she experienced abnormal vaginal discharges and sought help in the emergency room of a public hospital. However, when the paramedic learned she was HIV-positive, she said, he stopped short and told her to go home, scolding her for being pregnant in the first place.
She returned two days later for her regular checkup. Already hemorrhaging and in severe pain, she had to wait for the staff to assist all the HIV-negative patients first. Her baby’s heart was no longer beating.
“I am more than certain that if a doctor had attended me from the beginning, I wouldn’t have lost my baby,” she said.
The first cases of HIV/AIDS in Chile appeared in 1984, and the first HIV-positive woman was reported a year later. The number of reported HIV/AIDS cases through last year was 22,115.
Most are young adult males, and 87.4 percent were infected through sexual transmission, mainly homosexual and bisexual. However, the ratio between men and women with AIDS has steadily fallen, from 9.7 in 1990 to 5.7 in 2009, and among men and women with HIV, the ratio dropped from 6.2 to 3.7 in that same period.
“Government prevention campaigns have always focused on the general population and on occasion, specifically on the homosexual community, but never on women. Public health centers distribute condoms to sexual workers, homosexuals and people with HIV, but not to women in general because they are not regarded as a group at risk,” said Sonia Covarrubias, of the NGO EPES, which provides education to working women.
At the time, Francisca thought that the sterilization of HIV-positive women was normal procedure in hospitals. “I had absolutely no information about HIV and at that moment I was very frightened and more concerned about my son’s health,” she recalled.
She later learned her rights after being contacted by Vivo Positivo and in 2003 the NGO filed a lawsuit on her behalf in a local court against the Curico hospital staff responsible for her sterilization. The case was dismissed five years later after hospital officials claimed she had given verbal consent. She says she had not, and even if she had, Chilean law requires written informed consent.
In March 2009, the Center for Reproductive Rights and Vivo Positivo submitted Francisca’s case to the Inter American Human Rights Commission.
“I wanted to have more children,” said Francisca. “It hurts when my son asks for a little brother or sister — how can I explain to him that I can’t?”