The maternal mortality rate in Bolivia is one of the highest in Latin America, at 229 per 100,000 live births. Approximately 620 women die each year because of complications during pregnancy or childbirth, according to Family Care International.
Many projects supported by international organizations have been implemented over the past decades with very low success in terms of maternal mortality decrease. Currently, the government is developing a new strategy based on intercultural reproductive health care approach.
In recent years, some initiatives carried out by non-governmental organizations have also explored how cultural rights can bring about changes to make access to high quality sexual and reproductive health services available for all women in multi-cultural settings.
The Government of Evo Morales, the first indigenous President of Bolivia, has given to traditional medicine an institutional relevance. Since 2006, the Ministry of Health and Sports has a Vice-Ministry of Traditional Medicine and Intercultural affairs, which is in charge of promoting, protecting and guaranteeing the conservation of traditional medicines according to the indigenous knowledge and cultures.
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Officially, Bolivia’s name is "Plurinational State of Bolivia" because this Andean country has 34 aboriginal nations, which represent 55 percent of the total population. The largest ethnic groups are the Quechuas and the Aymaras, and it is estimated to be 30 percent Quechua-speaking and 25 percent Aymara-speaking people.
That is why the intercultural health approach is using the aboriginal languages, taking advantage of the regional resources and respecting the habits and traditions. Moreover, there are post-graduated programs at two Bolivian universities on Intercultural Health.
With the new Political Constitution, which came into force early this year, intercultural consciousness in reproductive health has gained in prominence. In fact, the intercultural health is also focusing to contribute to the reduction of cultural barriers related to the universal access to sexual and reproductive health care services. Cultural barriers make it difficult for indigenous women to receive qualified health care which constitutes one of the indirect causes of high levels of maternal mortality experienced in Bolivia.
Some of these barriers are the doctor’s relation which the patient, the isolation of the women in hospital because they are often separated from their families and the positions used for delivery.
The intercultural dialogue between practitioners of western and traditional medicine is currently stimulated. Nurses of various health care services and hospitals from the city of Cochabamba are assisting traditional childbirths, whereas rural midwives are been trained to improve their capacities to evaluate risks.
In Bolivia, a culture of rural midwifery known as partera, midwives speak the local language. Some of them understand the importance of evaluating risks, and for that purpose they use a sort of oracle, based in coca leaves.
Among indigenous peoples, 78 percent of children born at home and 53 percent of maternal deaths occurred also at home.
Indigenous women prefer to deliver at home because they do not feel confidence in hospitals, mainly because their customs are ignored or denied in such health services.
In traditional deliveries, women can choose the position. Most of them choose to squat, with their family around, and drink infusions of medicinal plants. Soon after the childbirth, women must keep warm and avoid contact with cold water.
Taking into account this situation, the Hospital Manuel Ascencio Villaroel in the municipality of Punata opened in August. The first delivery room in which indigenous culture and delivery habits are observed, even a kitchenette is available so they can prepare the traditional infusions.
The intercultural childbirth – as it is called- is designed in such a way that indigenous women feel confidence. All details are considered, for instance the indigenous are not forced to use hospital clothes. The hospital has also accommodation facilities for women’s relatives. The delivery is supported by a doctor, and a midwife can assist it as well.
So far, this "intercultural childbirth" has been well accepted by indigenous communities. But to be replicated, big efforts should be made in order to bridge the gap between doctors and midwives, and to get funding to build more "intercultural childbirth rooms." The Hospital Manuel Ascencio Villaroel was awarded a US$ 65.000 donation from the Japanese Agency of Cooperation.
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 thatthe 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.
Dominick, a disabled transgender man, started making the arrangements for a hysterectomy at age 30. The experience turned out to be a living nightmare—and not just because being disabled had previously presented obstacles to medical care, like being unable to access his gynecologist’s office.
“The doctor,” he says, “sent me home while internally bleeding after the surgery because he needed more beds. He ignored my concerns and dismissed my symptoms as overblown.” He says he almost died when he started hemorrhaging at home.
The horrors of that experience led Dominick to shy away from follow-up care and had profound psychological consequences. “I was afraid to leave my house, for fear I’d start bleeding out. I remember being on a bus to school, completely alone, and having a complete meltdown. I called my girlfriend and was crying and shaking and begging her to come get me.”
While he survived the experience, the trauma lingers to this day—and he’s not alone. For many trans men, dismissive treatment in the gynecologist’s office is part of a larger framework of harmful health-care practices that include verbal and physical abuse and denial of care. Thanks to the finalization of an Affordable Care Act (ACA) rule banning discrimination on the basis of gender, trans patients now stand to access care more easily, but enacting policies against discrimination isn’t quite the same as actually eliminating it. Trans people often face obstacles to care in health-care fields, unless they’re lucky enough to live in a region with a well-organized and structured clinic. Doctors who are ignorant about trans needs, like the imperative of surgical transition for some transgender people, can become dangerous roadblocks. And self-advocacy—including standing up for one’s immediate needs or asking for additional support in cases like Dominick’s—can be exhausting or impossible when continuously faced with such experiences.
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Reproductive health care in particular cuts to the heart of bodily autonomy, something trans people are often already denied in other settings. Yet trans men are frequently left out of the discussion when it comes to accessing services, even as the Women’s Health Network and other organizations, like the American Congress of Obstetricians and Gynecologists (ACOG), argue that the health needs of people who are assigned female at birth, no matter their gender, are indeed matters for reproductive rights conversations.
When it comes to seeking medical care in general, trans people say they often face ignorance or outright prejudice from medical professionals. A 2011 study conducted by the National Center for Transgender Equality and the National Gay and Lesbian Task Force found that 20 percent of survey respondents were denied health care due to their transgender or gender-nonconforming identity—and people of color experienced even more profound disparities. Twenty-eight percent of all respondents said they had been harassed in physicians’ offices, and 2 percent experienced physical violence.
Chillingly, when care providers discovered that their patients were transgender, the incidence of discriminatory attitudes increased. Many didn’t understand the needs of the transgender community, forcing half of the respondents to provide basic education about managing transgender patients. While proactive self-advocacy—being educated about your own health, self-assured at the doctor’s office, and ready to speak up for yourself—can help everyone achieve better health-care outcomes, this goes far beyond advocacy. In a medical culture where people may have difficulty obtaining providers, trans patients can be forced to repeatedly discuss sensitive medical information that can trigger dysphoria and frustration. And gender dysphoria is fatal if untreated: A staggering 41 percent of the trans community has attempted suicide.
While all aspects of medical care are important, reproductive health care sits at the axis of many important oppressions: It determines whether people are able to have families, whether they receive treatment after rape and sexual assault, if potentially serious sexually transmitted infections (STIs) are treated in a timely fashion, or if they can obtain compassionate and appropriate abortion care. And here, too, trans people have reported difficulty when it comes to requesting and receiving breast and cervical cancer screenings, STI testing and treatment, fertility care, contraception, abortion and pregnancy care, and other reproductive health needs. When such care is provided, it may come with detrimental comments and practices like misgendering patients or making assumptions about their personal lives.
But whether people are transgender men, along the nonbinary spectrum, agender, or along other axes of gender and experience, if they aren’t cisgender women, they say their reproductive health needs are often dangerously ignored.
“My first gyno, who was an older woman with all kinds of vocalized homophobic, transphobic, racist, and HIV-ignorant ideas,” says K., “left me so uncomfortable I wouldn’t let anyone touch me between my legs with their hands for a good ten years!” K., who is nonbinary, had a traumatic experience when seeking abortion care, and, like Dominick, wasn’t provided with counseling on the subject of egg storage before starting hormone therapy. “I personally never want to be pregnant again,” K. says, but the very option of freezing eggs and using a surrogate in the future was denied.
And this has real consequences: Trauma in reproductive health services, like that Dominick experienced, can drive transgender people into fearing the health-care system as a whole. Between discrimination and the fear that keeps people out of doctors’ offices, trans people are less likely to get preventive care—like HIV counseling and screening—and more likely to develop complications from delayed care. That includes vitally needed reproductive health services.
Discriminatory practices in gynecological care take place within the framework of another problem for trans people: Even with the ACA’s theoretical increased access to health care, substantial barriers to health-care access remain. Transgender people—particularly women and people of color, but also men to a lesser extent—are four times more likely to live in poverty, thus driving a disproportionate use of Medicaid coverage. As Rewire has reported, 16 states explicitly deny transition-related services under Medicaid coverage. Although the ACA explicitly bans discrimination on the basis of sex and gender, with additional protections for gender-nonconforming individuals now that the Department of Health and Human Services (HHS) has finalized its ruling on Section 1557, that doesn’t always work out in practice. Coverage of transition-related treatment, including hormones and surgery, may be denied as “elective” or “aesthetic” under insurance exclusions. For example, a hysterectomy may be deemed “not medically necessary.” Trans people can be instead forced to sue for their care, as in 2014, when Illinois woman Naya Taylor demanded access to hormones. This is especially true in cases where people have successfully changed the gender markers on their identifications, thereby creating a situation where Medicaid may deny coverage for activities like Pap tests for men or prostate cancer screening for women.
“I’ve got many stories about things that have gone wrong in my interactions with medical professionals,” remarks Everett Maroon, a transgender man who lives in the Pacific Northwest with his wife and family. “I’ve gotten inappropriate medical advice, incorrect therapies, seen medical and cultural incompetence, dealt with shitty care, not been provided options I should have gotten.” His issues are the health-care system’s issues, and they are a subject that should be of critical concern to everyone fighting for reproductive rights.
Fortunately, that’s growing to be the case more and more. As OB-GYN Cheryl Chastine wrote for Rewire last year, “How can providers or activists dare to presume that every patient we can’t ‘read’ as trans is cis?,” she said, adding “When those in the reproductive justice movement prioritize trans inclusivity, more trans individuals feel comfortable publicly identifying as such.”
Her commentary was just one example of the growing chorus of support from the reproductive rights and justice community as people come to understand that reproductive health needs are complex, and some populations have historically been left out of the equation.
Combating that oversight includes taking on challenges like providing competency training to health-care providers in medical school and beyond—including the recommendations ACOG is putting forward. Trans-competent health training should allow clinicians to put their patients at ease. At minimum, it should include discussions about gender identity and presentation, how to handle medical issues that may trigger dysphoria, how hormones might affect other prescriptions and the patient’s general health, and why trans patients may feel distrustful and uncertain around health-care providers.
It also includes passing comprehensive legislation to affirm that transition care and related medical treatments are covered by private insurance, Medicaid, and Medicare. And it includes robust third-party investigation—regulated by the HHS, whose Office of Civil Rights is responsible for enforcing the ACA’s nondiscrimination protections—of grievance complaints filed by trans patients, such as those made directly at clinics and hospitals in addition to those filed with state licensing boards.
It’s time to take trans health care seriously. Doing so will create a world of radical inclusion where people can feel safe seeking health care wherever they go.