Two years ago, I met Francisca, a young woman from a rural town in Chile. When she was 20, she and her husband got the very welcome news that they would be having their first child. But that excitement quickly turned into concern when Francisca found out she was HIV-positive during a routine pre-natal test. Despite her initial fears, though, Francisca was relieved to learn that there was a good chance that her child would be born healthy. She took all the necessary steps to reduce mother-to-child HIV transmission and delivered an HIV-negative baby boy in November 2002.
The day after her cesarean section, however, Francisca received a shocking blow—the operating surgeon had decided to sterilize her during the delivery without her knowledge or consent. She and her husband would not be able to have any more children together. Six years after this horrific incident, Francisca still could not tell her story without tears. The hardest part, she said, is when her son asks her for a baby brother or sister.
Unfortunately, Francisca’s experience is not unique. Reports of coercive and forced sterilization of HIV-positive women are regularly emerging from all over the world. Women living with HIV/AIDS in Chile and in many parts of the world experience significant barriers in accessing acceptable, non-discriminatory healthcare and, in particular, sexual and reproductive healthcare, in direct violation of their fundamental human rights.
Last year, the Center for Reproductive Rights and VIVO POSITIVO* brought Francisca’s case to the Inter-American Commission on Human Rights. Last week, we took the next step by releasing, Dignity Denied: Violations of the Rights of HIV-positive Women in Chilean Health Facilities, an in-depth investigation into the broader issue of discrimination in the provision of reproductive health services to women living with HIV/AIDS.
Over a period of six months, I spoke with 27 women in five different regions of Chile, gathering their stories. The research confirmed what we already knew from a previous study carried out by VIVO POSITIVO—women living with HIV/AIDS were frequently pressured not to become pregnant, were often scolded by healthcare workers for wanting to do so, and were sometimes pressured, coerced or forced to undergo surgical sterilization.
The women also told me about other forms of discrimination and abuse that they encountered. Some women informed me that they were given inaccurate or misleading information about HIV and that healthcare workers would advertise patients’ HIV status, completely disregarding confidentiality in care. Daniela told me that, after giving birth, she was told that she could not hug or kiss her newborn child because she would infect him. “It was then that I learned what it is to discriminate against a person,” she told me.
In addition to deterring these women from seeking necessary healthcare—Julia told me that she “tolerate[s] as much pain as [she] can” before going to the hospital after the negative experiences she had there.
The experiences that the women shared with me are heartbreaking and appalling, but the women wanted to make their voices heard to put an end to this abusive treatment. Unfortunately, HIV-positive women continue to suffer the same kind of discrimination and harassment all over Chile—a country that has committed to uphold the fundamental human rights of all people without discrimination on the basis of sex or HIV status.
Dignity Denied is a call to action for the government of Chile, key stakeholders, and civil
society to ensure that all women have access to acceptable, voluntary, and nondiscriminatory
healthcare services irrespective of their HIV status. We hope that by shedding light on what has happened to Francisca, Daniela, Julia and the other women we spoke with, we can prevent other HIV-positive women from experiencing abuse at the hands of people who should be caring for them.
Suzannah Phillips is the primary author of the new report, Dignity Denied: Violations of the Rights of HIV-Positive Women in Chilean Health Facilities. She is a Legal Fellow in the International Legal Program at the Center for Reproductive Rights.