amfAR, The Foundation for AIDS Research

Forced Sterilization and Abortion: A Global Human Rights Problem

Women living with HIV are being subjected to coerced or forced sterilization and abortion in countries around the world.
Women living with HIV are being subjected to coerced or forced sterilization and abortion in countries around the world.

By Lucile Scott

In January 2008, 30 young women living with HIV (WLHIV) in Namibia attended a workshop organized by the International Community of Women Living with HIV/AIDS (ICW) to provide an opportunity for the women to discuss the HIV-related issues in their daily lives. During the discussions, many of the women reported that they had been forced or coerced into being sterilized. They said that this not only denied them the right to decide when and if to have children, but also subjected them to a stigma that was even more pernicious in their communities than that engendered by HIV: the stigma attached to a woman unable to bear children.

Jennifer Gatsi-Mallet, director of the Namibian Women’s Health Network, the Namibian branch of ICW, says that before the workshop the organization was unaware that sterilization procedures were regularly being performed on WLHIV without their informed consent in the country’s public hospitals. But after surveying more than 200 HIV-positive women throughout the country, they found that approximately 17% of respondents had been subjected to forced or coerced sterilization. They submitted their findings to the Ministry of Health, which, according to Gatsi-Mallet, took no action. They then filed suit against the government on behalf of three of the women.

17% of HIV-positive women surveyed in Namibia had been subjected to forced or coerced sterilization.

In November 2014, the Namibian Supreme Court upheld an earlier 2012 lower court decision finding that the government had violated the women’s rights. It is the world’s highest profile case successfully establishing that medical practitioners have a legal duty to obtain informed consent from WLHIV before performing a sterilization procedure.

Advocates hope the ruling will set a critically needed global precedent regarding the reproductive rights of WLHIV. “This is a great victory for all women in Namibia and the world,” said UNAIDS Executive Director Michel Sidibé. “This decision reinforces the right to sexual and reproductive health for all women, irrespective of their HIV status.”

“Cruel and Inhuman”

The UN considers forced sterilization and abortion to be cruel and inhuman, and the practice is illegal in most of the nations where it has been documented.

There are multiple reasons these practices continue. Tamil Kendall, Ph.D., of the Women and Health Initiative at the Harvard School of Public Health, and other advocates, hypothesize that many medical professionals, including maternal healthcare providers, lack up-to-date knowledge about HIV treatment and are unaware of the <5% risk of mother-to-child transmission when an HIV-positive mother takes antiretroviral therapy (ART) throughout her pregnancy, or that if she continues to have access to ART she can remain in good health and care for her family.

WLHIV often do not report violations to authorities or seek legal redress due to fear of stigma and discrimination, lack of information about their rights and reproductive options, feelings of disempowerment within the healthcare system, and lack of funds for legal representation. “Forced sterilization is illegal, but there is a gap between the law and practice on the ground,” says Dr. Kendall. “Countries need lower-level technical and policy guidelines and trainings for healthcare providers about the issue.” 

Telling Their Stories

In recent years more WLHIV have stepped forward to tell their stories, educate other women about their rights, and demand change. As a result, in Namibia and other countries around the world, there are signs of progress.

In September, the Inter-American Commission on Human Rights agreed to consider its first case on the forced sterilization of an HIV-positive woman in Latin America. The case was brought by a Chilean woman, known as F.S., who was sterilized by her doctor without her consent while delivering a child during a Caesarian section. In 2007, F.S. sued the doctor in the Chilean court system, but the suit was dismissed after the prosecution claimed that she had given verbal consent for the procedure. If F.S. wins her appeal, the Commission could set another powerful precedent.

In Kenya, 20 WLHIV who say they were subjected to forced or coerced sterilization are filing a suit against the hospitals and doctors that performed the procedure, and plan to submit the brief by January 2015. The women are part of a larger group of 40 HIV-positive women profiled by ICW and the Africa Gender and Media Initiative.

“What happened to me was because I didn’t know my rights before,” says Hilma Nendongo, one of the Namibian woman surveyed by the Namibian Women’s Health Network. Several weeks after giving birth to her youngest child through a Caesarian section, Nendongo says she went for a routine medical follow-up and a nurse informed her that she had been sterilized while under anesthesia. She says she then recalled her provider handing her a form while she was in labor and pointing where to sign without explaining to her what she was consenting to. “With the labor pain, I didn’t have the strength to ask them to read it to me,” she says.

Increasing Awareness

The increased exposure brought by these cases and others have generated awareness and action. In December 2013, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the largest international program responding to the global HIV epidemic, updated its gender strategy to call for better integration of family planning and maternal health into its response to HIV. This integration of services improves the likelihood that doctors advising WLHIV about family planning and reproductive health are aware of the latest in HIV treatment and the rights of female patients.

“What happened to me was because I didn’t know my rights before,” says Hilma Nendongo.

In March, the World Health Organization and six UN agencies, including UNAIDS, issued a statement titled, Eliminating Forced, Coerced and Otherwise Involuntary Sterilization, that highlights how members of certain populations, including WLHIV, indigenous people, people with disabilities, and transgender individuals, are far more vulnerable to being sterilized without their informed consent. It also provides guidelines for how governments and civil society can work together to combat violations by educating WLHIV, communities, and healthcare providers, and by holding healthcare institutions accountable for their policies and practices.

[Dis]respect During Pregnancy

A key factor that puts WLHIV at risk for discriminatory practices is that their right to a full reproductive life remains in question for many in society. “There is an assumption that when a woman finds out she is living with HIV her sexual and reproductive life is over,” says Kendall. “That is starting to change within HIV service delivery, but not necessarily beyond HIV care, for example among with maternal healthcare providers.”

In a survey of 757 WLHIV in Southeast Asia conducted by the Asia Pacific Network of People Living with HIV (APN+)1 in 2012, 39% of respondents reported that a healthcare provider discouraged them from having children without informing them that ART greatly reduces the risk of transmission. Forty-two percent stated they had difficulty finding an obstetrician who would care for them because of their HIV status, 30% reported being pressured to have a sterilization procedure, and 22% said they had been coerced into having an abortion.

Similarly, in a study of 285 WLHIV in El Salvador, Honduras, Mexico, and Nicaragua led by Dr. Kendall, in collaboration with the Mesoamerican Coalition for the Reproductive Rights of Women with HIV, 44% of the respondents reported that they had not been told how to prevent vertical HIV transmission—for example by taking ART and avoiding breastfeeding, and one in four said that they had been pressured by healthcare providers to undergo sterilization.

The pressure can take many forms. Women may not be informed in advance of the procedure, or are “consented” while in active labor or under anesthesia. In some cases, they are told they will not receive medication or ongoing care unless they consent, or they are offered monetary compensation. And some women may not have control over their healthcare, while their families defer decisions on consent to male relatives or husbands. 

And the issue is not limited to developing nations. While official guidelines in the U.S. call for discussing reproductive options with WLHIV, this often does not occur. Approximately half the respondents in a 2013 survey of over 200 WLHIV in the U.S. conducted by The Positive Woman’s Network – U.S.A. reported that they had not been informed about the effectiveness of ART in preventing mother-to-child transmission—a rate similar to other global regions. “It’s not that they are being sterilized without their consent. It’s that they aren’t being given complete information about the procedures and their options,” says Naina Khanna, executive director of The Positive Woman’s Network. “There’s one quote from a woman we surveyed that exemplifies what we hear: ‘I had just found out I was HIV positive. I was also pregnant, and the doctor told me I had to get an abortion. I had no support to deal with my diagnosis or the abortion or the trauma from both.’ ”

Moving Forward

While there is a long way to go, Kendall reports that there are signs that healthcare providers, especially in sub-Saharan Africa, are becoming increasingly informed about the effectiveness of ART and the rights of WLHIV—and that WLHIV are increasingly aware of their own rights. WLHIV in South Africa began publicly reporting cases of forced sterilization shortly before ICW became aware of the issue in Namibia, and in 2012 the South African government adopted new guidelines calling for strengthening the link between reproductive health and HIV services and expanding those services to include discussions about preventing pregnancy and planning to safely conceive. In addition, networks of women living with HIV and their allies are mobilizing around reproductive rights globally, including in Asia and Latin America.

Once the issue has been exposed and policies have been put in place to improve the care that WLHIV receive, the next step to seeing on-the-ground results is implementation, but this can be a slow process. “Governments should create smart partnerships with civil society organizations as a way of ensuring implementation,” says Gatsi-Mallet, adding that her organization is working to strengthen civil society’s ability implement to change in Namibia. “NWHN is striving to ensure that [WLHIV] are educated on the laws with the aim of the women then advocating in their community. We have a saying, ‘Educate a man and you educate an individual, educate a woman and you educate the whole community.’ ”

 

1APN+. Positive and Pregnant: How Dare you. A study on Access to Reproductive and Maternal Health Care for Women Living with HIV in Asia. 2012.