Chile: Women Sterilized Over HIV Status

(IPS) – When Francisca arrived at the historic Curicó Hospital – a staple in the Chilean central valley for nearly one and a half centuries – for the birth of her first child, she didn’t know it would be her only one.

“I was in the recovery room at the hospital of Curicó when [the nurse] entered and, after asking me how I was feeling, told me that I was sterilised and that I would not be able to have any more children,” she recalls in a joint report by the New York-based Center for Reproductive Rights (CRR) and the Chilean NGO Vivo Positivo released Thursday.

It was 2002. Francisca (not her real name) was 20 years old and she and her husband foresaw a future in which their visit to the maternity ward would not have been their last – in which their family would grow and in which their firstborn son would have siblings.

Instead, according to the report, the attending surgeon sterilised her during her cesarean section operation without any prior discussion and without her permission because Francisca is HIV-positive.

“They treated me like I was less than a person,” she said. “It was not my decision to end my fertility; they took it away from me.”

Suzannah Phillips, one of the authors of the report – which documents cases of discriminatory treatment against HIV- positive mothers – argues that Francisca’s story is not an isolated incident.

The report, titled ‘Dignity Denied,’ states that the forced sterilisation of HIV-positive women was routine in Chile prior to 2000, when its health laws were revised to include the notion of informed consent – a process of communication whereby patients voluntarily give their permission for treatment after being given adequate counseling about all possible options.

But the practice continued: In a 2004 Vivo Positivo country study, 29 percent of participants – seropositive women – said that their health care providers pressured them to get sterilised, while 12.9 percent said they were sterilised without consent.

Vasili Deliyanis, head of Vivo Positivo, told IPS that on the one hand, the South American nation is one of the countries that has had the most success in reducing the birth rate of HIV-positive babies, thanks to the adoption of a protocol for the prevention of vertical – or mother-child – transmission of the AIDS virus.

On the other hand, Chilean women with HIV continue to face discrimination in the field of sexual and reproductive health, he explained.

María Eugenia Calvin, with the Popular Education in Health Foundation (EPES), a non-governmental organisation, said sterilisation without consent is only the most severe expression of a deeper problem.

In Chile, “there are no specific programmes targeting women living with HIV in the field of sexual and reproductive rights,” said Calvin, a social worker who has co-authored several studies on the question.

Despite the fact that Chile’s health laws and regulations have incorporated a gender and rights focus, and that health care for people living with HIV is good, “there are limitations in the approach taken towards the specific situation of these women,” Calvin said.

They are not included, for example, in the Health Ministry’s guidelines on humanised birth, which are necessary, she said, due to the various restrictions that HIV-positive mothers face, such as the one on breastfeeding.

As part of a study on violence against women and the increased feminisation of HIV/AIDS, published in 2009, EPES interviewed 102 HIV-positive Chilean women.

A number of them talked about being sterilised without their consent, and of being pressured by health professionals to undergo the procedure, Calvin said.

She also noted the lack of HIV/AIDS prevention programmes oriented towards women. “Women have not been a major focus” in national campaigns against the disease, which continue to target men who have sex with men.

While ‘Dignity Denied’ focuses on Chile – Vivo Positivo is a Chilean non-governmental organisation working to enhance the quality of life of people living with HIV/AIDS – Phillips told IPS that the 27 case studies presented in the report are indicative of a global trend, which has recently been gaining awareness.

“It’s something that’s been emerging probably in the last decade,” she told IPS.

Since the 2004 study, other disturbing cases – mostly in the developing world – have become publicised, echoing Francisca’s narrative of loss and stolen progeny.

Seropositive mothers robbed of their basic right to choose the number and spacing of their children have filed lawsuits in the Dominican Republic, Mexico, Namibia, South Africa and Venezuela. Phillips told IPS that these discriminatory practices are also common in parts of Eastern Europe and Asia.

But so far, while mounting, the evidence is largely anecdotal. Because of the stigma surrounding HIV/AIDS and fear of retribution, women are often reluctant to speak out about being mistreated because of their HIV status while receiving maternal care. As a result, Phillips concedes that “it’s hard to get statistical data to really know how widespread the phenomena is.”

For a year after her son was born, Francisca kept quiet about being sterilised against her will, Phillips said. It was only after Vivo Positivo reached out to her at a clinic where she was receiving antiretroviral treatment that she began learning more about reproductive rights and finally shared her experience.

Troublingly, Phillips told IPS that she and her co- authors found this general lack of awareness and misinformation to be “rampant” in Chile even among health care professionals themselves.

“The problems originate more when they (HIV-positive patients) seek urgent or obstetric care – or any other specialty outside of… infectious diseases,” she said, because these health workers are typically undertrained to treat seropositive patients.

Cases documented in ‘Dignity Denied’ reveal that some doctors and nurses were shockingly misinformed about even the methods of HIV transmission, inaccurately advising mothers to use separate eating utensils and bathrooms, misguidedly directing them not to touch their babies – or refusing to touch the women themselves – and, as in Francisca’s case, coercing or forcing them to get sterilised.

“Forced sterilisation is not only a fundamental violation of a woman’s reproductive rights; it has few benefits in terms of HIV prevention,” said Yakin Ertürk, former U.N. Special Rapporteur on Violence against Women, in the report.

“Key interventions can reduce the risk of MTCT (mother-to- child transmission) of HIV/AIDS to less than two percent in countries like Chile, where adequate breast-milk substitute is available,” the report states.

And U.N. experts, health officials and analysts say that the virtual elimination of mother-to-child HIV/AIDS transmission is achievable by 2015 worldwide – which means an HIV-free generation is within five years’ reach. Francisca’s son, now eight-years old, was born HIV-negative.

In 2007, with the help of Vivo Positivo, Francisca filed a lawsuit against Curicó Hopsital in local courts. The following summer, it was denied without the chance of appeal. Her case, filed against Chile by the CRR and Vivo Positivo, is now pending before the Inter-American Commission on Human Rights, a regional tribunal.

*Daniela Estrada reported from Chile.