Giving Birth, Contesting Stigma: Cuban Women Living With HIV
Castro, Arachu & Khawja, Yasmin & González-Núñez, Ida
JULY/AUGUST 2008 report: hiv/aids Giving Birth, Contesting Stigma: Cuban Women Living With HIV Prenatal care at a Cuban maternity ward in viales. Cuba’s program aimed at preventing...
...She had had an abortion at age 13 and this time decided to have the child...
...delivery via cesarean section to avoid a higher risk of transmission through vaginal birth...
...When the IPK reported these first two cases, the Cuban government allocated $2 million to import testing kits that would allow them to perform HIV tests on blood her partner after they were told that there was a 70% chance that her child would be born HIV-negative...
...But I was going to have that child, because I own my body,” Yibaleitis resolved...
...These women experience of were drawn from Cuba’s popu lation of 213 HIV-positive or reproduction, HIV-serodiscordant women their decision who had given birth in Cuba between 1986, when the first making, and woman was diagnosed, to Detheir behavior...
...In 1998, thanks to medicines donated to Cuba, Yeyslis became one of the first Cuban patients to be enrolled in the ART program...
...In a setting like Cuba, where access to effective treatment is universal, HIV-positive women can regain control over their reproductive lives and contest, through pregnancy, years of disease and rejection...
...that I had him...
...Although at first she was concerned that she could transmit HIV, Exposure to a new disease generates new cultural models for the cause and expected course of disease, but these models change with time because diseases have a social course...
...Her family supported her decision, except for her mother-in-law, who insisted that she have an abortion...
...All the interviews were conducted at the hospital of the IPK, where a pediatrician (co-author González-Núñez) follows all the children born to HIVpositive parents in Cuba until the child’s negative HIV diagnosis is confirmed...
...Cuba’s response to AIDS began in 1983, when the cause of the new disease was still unknown, with the founding of a National AIDS Commission, whose first recommendations included destroying imported blood products and stopping the importation of new blood products...
...Five years later, a child came as a be healthy too,” she said...
...She sought the advice of a clinical team, who explained that with the recommended prophylactic measures the couple could go ahead with their plans and that they should not wait, since it would be better to become pregnant while she was in the early stages of the disease...
...Most who had had at least one abortion after being diagnosed with HIV told us they had terminated the pregnancy because there was no available treatment for their disease...
...NACLA REPORT ON THE AMERICAS report: hiv/aids nal and child health program prior to the HIV epidemic...
...Yeyslis was sent to live in the Santiago de las Vegas sanatorium, outside of Havana, where she had four unplanned pregnancies, all of which ended in induced abortions (during the period of mandatory quarantine in Cuba, HIV cross-infection, or reinfection with a different viral strain, was not known to pose health problems, and unprotected sex among people living in the sanatoriums occurred frequently...
...In 2005, we conducted a study to explore the relationship between the universal provision of ART and the rapid increase of pregnancies in HIV-positive women in Cuba...
...I’m another person, I’m different...
...She began receiving ART at the start of her pregnancy when her immunologic defenses suffered...
...Another woman, Yibaleitis, was diagnosed with HIV in 1993 at the age of 18...
...Based on our interviews, in the years since ART became available, family members, such as a partner or mother, and health professionals, have increasingly supported women in their decision to carry their pregnancies to term...
...When Dorelis, for example, was diagnosed with HIV at age 17, in 2002, she moved to the sanatorium in her province...
...At the sanatorium in Pinar del Río, she planned a pregnancy with Before the introduction of aRt in Cuba, it was common for doctors to strongly recommend abortions and even to exert a lot of pressure on HIv-positive women...
...Only three women stated feeling pressured by their doctors or family to seek an abortion...
...After the diagnosis, however, she had three induced abortions...
...As anthropologists noted years before the advent of AIDS, the introduction of effective therapy for a particular disease may profoundly alter the social interpretations of that disease...
...pathology is always embedded in social experience...
...Her family tried to persuade her to have an abortion, but she felt reassured by the availability of ART and by the extensive array of support provided to people living with HIV in Cuba...
...The purpose of this structured, open-ended life history interview was to identify which factors contributed to these women’s decisions concerning their pregnancies...
...Twenty-eight women said their worries about transmitting HIV to their child subsided after discussing their pregnancy with doctors, seeking information on mother-to-child transmission, learning that they could seaN sPraGue / GLobaL aWare JULY/AUGUST 2008 report: hiv/aids deliver by cesarean section and that ART was available, and meeting HIV-positive women who had had HIVnegative children...
...Yasmin Khawja is a student at the Albert Einstein College of Medicine in New York...
...At the sanatorium they met other couples who were also living with HIV and had healthy children...
...4 Put in its global context, this accomplishment is striking: According to the latest UNAIDS estimates, 420,000 children under 15 were infected with HIV in 2007, 330,000 died of the disease, and 2.5 million were living with HIV.5 Multiple reasons have been cited to explain Cuba’s relative success in this area: the existence of a solid and accessible materArachu Castro is Assistant Professor in the Department of Global Health and Social Medicine at Harvard Medical School...
...At the sanatorium, where she had lived for several years, “all the children born [to HIV-positive women] were healthy, so I thought that mine would rIck GerHarTer NACLA REPORT ON THE AMERICAS report: hiv/aids the ability of many HIv-positive Cuban women to give birth to HIv-negative children has led to a profound reduction in HIv-related stigma and discrimination directed toward those who decide to have children...
...Until 1993, most pregnancies among Cuban women living with HIV were terminated...
...JULY/AUGUST 2008 report: hiv/aids Giving Birth, Contesting Stigma: Cuban Women Living With HIV Prenatal care at a Cuban maternity ward in viales...
...Three years later, she became pregnant with an HIV-positive man who also lived at the sanatorium and who did not accede to her requests to use condoms...
...Active contact-tracing, or finding and testing the sexual partners of those diagnosed with HIV, was another measure aimed at diagnosing infected people early in their disease process.12 Cuba also enforced a controversial strategy of mandatorily quarantining all people diagnosed with HIV infection in sanatoriums, a practice that was discontinued in 1993, when staying or moving to a sanatorium became optional.13 But it was the successful, universal provision of ART that has perhaps had the most profound impact on Cuban women’s lives...
...his wife subsequently tested positive...
...More than half of all births to an HIV-positive parent occurred after ART became widely available in June 2001...
...Since 1999, the number of pregnancies carried to term and the uptake of AZT have increased...
...But the effects of this program go beyond quantitative measures...
...Despite the fact that my child has [HIV], I’m so glad gift: “If I wasn’t already think ing too much about HIV, now much less so...
...This shows us that the availability of effective treatment can reshape HIV-positive women’s experience of reproduction and their decision making, as well as the attitude of family members, health professionals, and communities...
...We invited 55 women to participate in the study, all of whom regularly brought their children from throughout Cuba to the biweekly pediatric HIV clinic at the Pedro Kourí the availability of Institute of Tropical Medicine effective treatment (IPK), which is the national reference center for HIV, and can reshape HIv-all gave their informed consent positive women’s to participate...
...the few who carried their pregnancies to term gave birth by cesarean section and were advised against breast-feeding...
...Even Yeyslis’s doctors tried to persuade her to have an abortion, which only reinforced her motivation to carry her pregnancy to term...
...The birth of her daughter in 2005 radically changed her life to a positive experience...
...Kitiuska had had an abortion when she was 15 because she did not want to interrupt her education...
...I only think about him, I am happy as I am...
...It had been somewhat different for Kitiuska, who was diagnosed with HIV several years later, in 2003, at age 18—during her last weeks of high school...
...Having also met and interacted with HIV-negative children born to other women living with her in the sanatorium and being able to talk with her doctors about how to prevent HIV transmission helped ease her worries...
...the availability of prophylactic measures, such as the provision of zidovudine (AZT), starting at the 14th week of pregnancy unless the pregnant woman is already receiving antiretroviral therapy (ART) for her own health...
...In its ability to help overcome AIDS-related stigma, publicly accessible ART demonstrates a capacity to treat not only physical disease but also the often far more damaging social aspects of HIV...
...JULY/AUGUST 2008 report: hiv/aids an HIv/aIDs sanatorium in Matanzas, Cuba, 1995 At age 13, yeyslis rebelled by dropping out of school.8 She did not have any stable work...
...Before the introduction of ART in Cuba, it was common for doctors to strongly recommend abortions and even to exert a lot of pressure, based on what women reported in the interviews...
...He distracts me from the world around me...
...her plans are “to keep going, to keep living...
...Of the women interviewed, 64% knew that she or her partner was HIV positive before their most recent pregnancy...
...This is especially relevant for the question of disease-related stigma— which, as other social scientists have shown, is transformed by the advent of an effective treatment like ART.6 In the Cuban context, the availability of ART has allowed an increasing number of HIV-positive women to give birth to HIV-negative children, leading to a profound easing of stigma and discrimination directed at women living with HIV who decide to have children...
...cember 2005—26% of Cuba’s population of HIV-positive women (who have collectively given birth to 229 children...
...Since her child was born, Yeyslis has known of other women with HIV who have also given birth, though she still expressed concern that her son would be rejected once he started attending preschool...
...by 1986, all blood donations were screened for HIV—an initially expensive measure that prevented blood recipients from becoming infected with the virus...
...She went to get tested when she heard the rumor around her neighborhood that a former boyfriend had AIDS...
...Their lives as women have been shaped in a country that continues to boast an HIV-prevalence rate below 0.1%, the lowest in the Americas and among the lowest in the world.9 Dorelis stopped worrying when she initiated prophylaxis at 13 weeks of pregnancy...
...Vanessa was diagnosed with HIV in 2000 at age 25 after having had a healthy child...
...But in Santa Clara, a city in central Cuba, there were only a handful of HIV-positive women, and for them the notion of carrying a pregnancy to term was still unusual...
...The great majority of these women had had serial abortions until their experience of living with HIV was transformed by the introduction of ART...
...She knew that ART would dramatically reduce the chances that her child would be born with HIV and that her own mother would take care of the child if necessary...
...Participants agreed to be interviewed about their life with HIV and their reproductive and sexual histories...
...Several women described having felt discriminated against at some point in their lives due to HIV: “No matter where I go, there’s always someone who will reject me,” “It’s hard to live with a red ribbon stuck on my forehead, to always feel highlighted,” or “I felt like I was something bad, like the pest...
...Building on the already well-developed primary health care network, the Ministry of Public Health created an epidemiological surveillance system in each hospital to detect clinical manifestations of AIDS.10 The first Cuban HIV case was diagnosed in late 1985—a man who had served in Mozambiqueasan internacionalista (international aid worker...
...When she was diagnosed with HIV in 1990 after dating her second boyfriend, she was unaware of the severity of her diagnosis...
...access to voluntary abortion during the first 12 weeks of pregnancy...
...routine testing of HIV during the first trimester of pregnancy...
...She had already had one abortion at that time and later, after the diagnosis, had six more because she had no desire to be a mother...
...This was most likely due to an increase in the total number of women of childbearing age with HIV who were diagnosed late in their pregnancies...
...She gave birth by cesarean section and did not get “her tubes tied,” because she considers herself young and is hoping for a cure...
...It has also lessened the pressure that family members and health professionals often exert on HIV-positive pregnant women to have abortions...
...donations.11 The imported kits were distributed to all the blood banks and centers for hygiene and epidemiology of the island...
...By arachu Castro, yasmin Khawja, and Ida gonzález-núñez kIke caLvo / vW / THe ImaGe Works Since 2001, the local manufacture in Cuba of eight antiretroviral drugs has guaranteed access to effective AIDS therapy to all Cubans who meet the clinical criteria for the disease.1 Although the incidence of HIV in Cuba has continued to increase, both the number of deaths from AIDS and the incidence of opportunistic infections related to HIV have dropped, as has the number of hospitalized AIDS patients.2 Cuba has also successfully prevented mother-to-child transmission of HIV: Since 1986, only 29 children have become infected with the virus, ei therduringpregnancy,labor,orbreast-feeding.3 This very low infection rate led UNAIDS in 2006 to call Cuba’s program aimed at preventing mother-to-child transmission “among the most effective in the world...
...Cuba’s program aimed at preventing mother-to-child transmission of HIv is “among the most effective in the world,” according to unaIDs...
...Upon learning her diagnosis, she took her final exams, graduated, and moved to the sanatorium, where she met her current partner—who had been diagnosed with HIV two years earlier...
...However, according to our interviews, fewer HIV-positive women are seeking abortions than in the past.7 The stories of the women described here depict various aspects of the lives of women living with HIV in Cuba...
...and the distribution of evaporated milk as a substitute for breast-feeding—all of which are fully publicly subsidized and provided free of charge to Cuban citizens...
...In 2003, when she returned home to Santa Clara from the sanatorium, pregnant for the fifth time, Yeyslis did not want to have another abortion...
...After that year, when ambulatory care for people living with HIV was introduced, the absolute number of pregnancies carried to term increased...
...Kitiuska, who for now does not need ART, told us she planned to attend nursing school when her child was a year old...
...Everything has changed...
...Some of them also expressed, however, that they experienced a process of greater social inclusion in recent years, oftentimes enhanced by their having given birth...
...Speaking of her son, she says: “Since he was born, my life has completely changed...
...What I wanted, I got...
...We always wanted to have a child, but we asked around to know more,” she said...
...However, she later changed her mind and tried to become pregnant...
...As these women’s stories make clear, the social course of HIV in Cuba has taken a unique turn...
...Ida González-Núñez is a pediatrician at the Pedro Kourí Institute of Tropical Medicine in Havana...
...I’m happier...
...During the first two years after the introduction of AZT in 1997 to prevent mother-to-child transmission, most infected pregnant women either continued to have abortions or refused to take AZT...
...All but one became pregnant after June 2001, when ART became widely available in Cuba, and all gave birth successfully...
Vol. 41 • July 2008 • No. 4
