Chilean Woman Living with HIV Sterilized Without Consent

Angela Castellanos

After a year of unsuccessful lawsuits, a woman living with HIV and sterilized without her consent filed a complaint against Chile before the Inter-American Commission on Human Rights.

After a year of unsuccessful
private prosecutions and lawsuits before Chilean judicial and health
bodies, a woman living with HIV and sterilized without her consent filed
a complaint against Chile before the Inter-American
Commission on Human Rights

(IACHR) last February 2, charging that the government failed
to protect her from being forcibly sterilized. 

The 27-year-old woman from Hualañé,
Chile, was sterilized at the state hospital of Curicó, immediately
after giving birth in 2002. The woman, living with HIV, stated she was
not asked to authorize such a surgical procedure, nor was the
subject discussed with her, and she expressed the desire to have more children. 

Chilean regulations mandate written consent for sterilizations. The Ministry of Health makes it clear: "In the cases of sterilization during a cesarean, the procedures
of counseling and consent have to be completed and signed prior to
the sterilization."

The young woman submitted a
private prosecution against the hospital of Curicó and a lawsuit before
the Chilean courts of justice, but despite the proofs submitted, neither
the Ministry of Health nor the tribunals found in their investigations
human rights violations.  

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The Chilean woman F.S. (who
prefers to remain anonymous) claims that the hospital staff sterilized her because of her HIV status. Therefore, Vivo Positivo, the Chilean organization which advocates for people living with HIV/AIDS, began working with the Center for Reproductive
Rights
, and both
submitted a petition on F.S.’s behalf before the Inter-American Commission on Human Rights, which monitors
the Organization of American States members’ compliance with the American Convention on Human
Rights. 

In the complaint, the Center
for Reproductive Rights and Vivo Positivo argued that the state of Chile
violated the woman’s right to be free from all forms of discrimination, the
right to decide the number and spacing of her children, the right to
be free of violence, and the right to have access to justice. These
rights are guaranteed under the American Convention on Human Rights
and the Inter-American Convention on the Prevention, Punishment and
Eradication of Violence against Women. 

"Despite proof to the
contrary, neither the Ministry of Health nor the Chilean Courts found
that the facts of this case amounted to a violation of F.S.’s human
rights. This denial of justice clearly demonstrates the discrimination
that people living with HIV/AIDS continue to suffer in Chile," said
Vasili Deliyanis, executive director of Vivo Positivo. "The presentation
of this case to an international tribunal provides a prime opportunity
to reinvigorate the discussion on the rights of HIV-positive women in
our country. It also provides an opportunity for the Chilean State to
reestablish the rule of law." 

Through this complaint the
Center and Vivo Positivo "are asking the IACHR to acknowledge human
rights violation, undo the harm done to F.S. and provide her with monetary
compensation; and adopt policies that guarantee women living with HIV
the freedom to make reproductive health decisions without coercion,"
stated the Center’s press release.   

"Forced sterilization
is a violation of a woman’s most basic human rights and is all too often
committed against members of vulnerable groups, which deserve special
protection, such as women living with HIV," said Luisa Cabal, director
of the international program at the Center for Reproductive Rights,
which is a global legal advocacy organization dedicated to advancing
women’s reproductive health, self-determination, and dignity as basic
human rights. "It’s time that the Chilean government respects the
human rights of all its citizens and takes concrete action to guarantee
that a woman living with HIV receives quality reproductive health services
and has the ability to make decisions about her own life."  

Unfortunately, her case is
not the only one. Vivo Positivo and others conducted the study "Chilean Women Living with HIV/AIDS: Sexual and Reproductive Rights?" which revealed pressures on women to get sterilized and found that women have even been sterilized
without consent. 

The research included a comprehensive
questionnaire, which included an index of pressures. Women were asked if they had been pressured "to change your sexual habits," "to use contraception methods,"
"to use the same contraception method," and "to get a sterilization." Analysis found that 50% of respondents hadn’t been pressured, 35%
had been somewhat and 15% had been strongly pressured. Therefore, the study concluded
that in a significant proportion of cases counseling promotes the idea that
women with HIV should not become pregnant.  

The study found that 80% of
women who have been sterilized obtained this surgery after having being informed of their HIV status. The questionnaire also shows a decreasing
practice of sterilizations on women living with HIV-AIDS from 2000.
This could be linked with the resolution mandating written, informed consent, issued in 2000, and signed
by the current President Michelle Bachelet and Ministry of Health at
this year. 

Yet nearly a third — 29% — of those who were
sterilized said they had been pressured by medical staff to do so and
10% of the sterilizations were performed without their consent. Moreover,
young women are the majority in both cases, this is to say, women starting
their reproductive lives. 

In Chile, the mother-to-child
transmission of HIV has a 1.8% probability, as long as the woman receives anti-retroviral therapy. HIV experts also recommend cesarean delivery to diminish
the contagious risk and that mothers living with HIV avoid breastfeeding.

Commentary Sexual Health

‘Not the Enemy, But the Answer’: Elevating the Voices of Black Women Living With HIV

Dazon Dixon Diallo

National HIV Testing Day is June 27. But for longtime advocates, ensuring that the women most affected by the epidemic can get and influence care and policy is the work of many years.

I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.

June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.

This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.

A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”

As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.

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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.

Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.

The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.

As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.

Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.

Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.

“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”

Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.

Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.

Commentary Human Rights

A Sterilized Peruvian Woman Seeks Justice From the Americas’ Highest Human Rights Court

Cynthia Soohoo & Suzannah Phillips

I.V.'s case, I.V. v. Bolivia, illustrates the all-too-common scenario of medical providers making decisions on behalf of women who are deemed unfit or unable to make their own choices.

In 2000, a Peruvian political refugee referred to by her initials, “I.V.,” went to a Bolivian public hospital to deliver her third child. According to court documents, the doctors decided during the cesarean section that a future pregnancy would be dangerous for I.V. and performed a tubal ligation—for which they claimed they had I.V.’s consent. When I.V. learned that she had been sterilized two days later, she said, she was devastated.

After her complaint against the surgeon who sterilized her was dismissed by Bolivian courts, I.V. brought her case to the Inter-American Court of Human Rights (IA Court), which heard oral arguments earlier this month. In a region where there are widespread reports of forced sterilization, the case is the first time the court will consider whether nonconsensual sterilization is a human rights violation.

The IA Court should hand down its decision in the coming months. A favorable ruling in this case by the IA Court—the highest human rights court in the Americas—could require Bolivia to, among other things, pay reparations to I.V., investigate and possibly punish the doctors who sterilized her, and take steps to prevent similar situations from occurring in the future. The decision will also have ramifications across the region, establishing a binding legal precedent for the 25 countries that are party to the American Convention on Human Rights.

I.V. v. Bolivia provides an important opportunity for the IA Court to condemn forced sterilization and to adopt clear standards concerning informed consent. It would also be joining U.N. human rights bodies and the European Court of Human Rights in recognizing that forced sterilization violates fundamental human rights to personal integrity and autonomy, to be free from gender discrimination and violence, to privacy and family life, and, as CUNY Law School’s Human Rights and Gender Justice Clinic and Women Enabled International recently argued in our amicus brief to the IA Court, to be free from cruel, inhuman, or degrading treatment or torture.

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Further, the European Court and U.N. experts recognize that possible health risk from a future pregnancy cannot justify nonconsensual sterilization because there are alternative contraceptive methods to prevent pregnancy and women must be given the time and information needed to make an informed choice about sterilization. The IA Court should make similar findings.

Unlike the sterilization of Mexican immigrant women in the United States in the 1970s, recently portrayed in the documentary No Más Bebés, I.V.’s case doesn’t appear to involve a broad governmental policy of sterilizing poor or immigrant women. But it illustrates the all-too-common scenario of medical providers making decisions on behalf of women who are deemed unfit or unable to make their own choices.

Indeed, forced and coerced sterilization is disproportionately perpetrated around the world against women in stigmatized groups, such as women living with HIV, poor women, ethnic or national minorities, or women with disabilities because some health-care providers believe that such women should not have children. Whether driven by animosity against certain women, stereotypes that these women are unfit to become parents, or a paternalistic notion that “doctor knows best,” the end result is the same: Women are permanently robbed of their capacity to have children without their consent.

The parties contest whether I.V. orally consented to sterilization during her c-section. But even if she did so, medical ethical standards and decisions from U.N. human rights bodies and the European Court make clear that consent obtained during labor or immediately preceding or after delivery cannot be valid because the circumstances surrounding delivery—due to pain, anesthesia, or other factors—are inherently inconsistent with voluntary patient choice.

I.V. delivered at a public hospital that predominantly treats indigent women, many of whom are indigenous or migrants. The Inter-American Commission on Human Rights—which effectively acts as a court of first instance for the IA Court—considered the case before it went to the IA Court and noted the special vulnerability of migrant women seeking health care in Bolivia, given their reliance on public services and the lack of care options. It found that I.V.’s medical team was influenced by “gender stereotypes on the inability of women to make autonomous” reproductive decisions. It further concluded that the decision to sterilize I.V. without proper consent reflected notions that the medical staff was “empowered to take better medical decisions than the woman concerned regarding control over reproduction.”

Sixteen years after her sterilization, I.V. still acutely feels the emotional and psychological toll of having been sterilized. Because of the severity of physical and mental harms that forced sterilization imposes upon women, the Inter-American Court should join the European Court of Human Rights and U.N. human rights experts in recognizing that forced sterilization constitutes cruel, inhuman, or degrading treatment and may constitute torture.

In addition to condemning forced sterilization, the IA Court should recognize the multiple human rights violations I.V. suffered. The Inter-American human rights system protects women from gender-based discrimination and violence and violations of the right to personal integrity, information, privacy, and family life, all of which are at issue in this case.