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, either during pregnancy, labor, or breast-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.”4
 Prenatal care at a Cuban maternity ward in Viales. Cuba’s program aimed at preventing mother-to-child transmission of HIV is “among the most effective in the world,” according to UNAIDS. (By Kike Calvo / VW / The Image Works) |
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 maternal and child health program prior to the HIV epidemic; routine testing of HIV during the first trimester of pregnancy; access to voluntary abortion during the first 12 weeks of pregnancy; 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; delivery via cesarean section to avoid a higher risk of transmission through vaginal birth; 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.
But the effects of this program go beyond quantitative measures. 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. 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. It has also lessened the pressure that family members and health professionals often exert on HIV-positive pregnant women to have abortions. 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. 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.
Until 1993, most pregnancies among Cuban women living with HIV were terminated; the few who carried their pregnancies to term gave birth by cesarean section and were advised against breast-feeding. After that year, when ambulatory care for people living with HIV was introduced, the absolute number of pregnancies carried to term increased. 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. 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. Since 1999, the number of pregnancies carried to term and the uptake of AZT have increased. More than half of all births to an HIV-positive parent occurred after ART became widely available in June 2001.
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. 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 Institute of Tropical Medicine (IPK), which is the national reference center for HIV, and all gave their informed consent to participate. These women were drawn from Cuba’s population of 213 HIV-positive or HIV-serodiscordant women who had given birth in Cuba between 1986, when the first woman was diagnosed, to December 2005—26% of Cuba’s population of HIV-positive women (who have collectively given birth to 229 children). Participants agreed to be interviewed about their life with HIV and their reproductive and sexual histories. The purpose of this structured, open-ended life history interview was to identify which factors contributed to these women’s decisions concerning their pregnancies. All the interviews were conducted at the hospital of the IPK, where a pediatrician (co-author González-Núñez) follows all the children born to HIV-positive parents in Cuba until the child’s negative HIV diagnosis is confirmed.
Of the women interviewed, 64% knew that she or her partner was HIV positive before their most recent pregnancy. All but one became pregnant after June 2001, when ART became widely available in Cuba, and all gave birth successfully. The great majority of these women had had serial abortions until their experience of living with HIV was transformed by the introduction of ART. 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. 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.
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 An HIV/AIDS sanatorium in Matanzas, Cuba, 1995. (By Rick Gerharter) |
At age 13, Yeyslis rebelled by dropping out of school.8 She did not have any stable work. When she was diagnosed with HIV in 1990 after dating her second boyfriend, she was unaware of the severity of her diagnosis. 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 1998, thanks to medicines donated to Cuba, Yeyslis became one of the first Cuban patients to be enrolled in the ART program. 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. 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. 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. Even Yeyslis’s doctors tried to persuade her to have an abortion, which only reinforced her motivation to carry her pregnancy to term. She gave birth by cesarean section and did not get “her tubes tied,” because she considers herself young and is hoping for a cure. 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.
Another woman, Yibaleitis, was diagnosed with HIV in 1993 at the age of 18. 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. However, she later changed her mind and tried to become pregnant. 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 be healthy too,” she said. Her family supported her decision, except for her mother-in-law, who insisted that she have an abortion. “But I was going to have that child, because I own my body,” Yibaleitis resolved. She began receiving ART at the start of her pregnancy when her immunologic defenses suffered. Speaking of her son, she says: “Since he was born, my life has completely changed. I’m another person, I’m different. Despite the fact that my child has [HIV], I’m so glad that I had him. I’m happier. Everything has changed.”
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. She went to get tested when she heard the rumor around her neighborhood that a former boyfriend had AIDS. 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. At the sanatorium they met other couples who were also living with HIV and had healthy children. “We always wanted to have a child, but we asked around to know more,” 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. Kitiuska had had an abortion when she was 15 because she did not want to interrupt her education. Five years later, a child came as a gift: “If I wasn’t already thinking too much about HIV, now much less so. He distracts me from the world around me. I only think about him, I am happy as I am. What I wanted, I got.” Kitiuska, who for now does not need ART, told us she planned to attend nursing school when her child was a year old.
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 deliver by cesarean section and that ART was available, and meeting HIV-positive women who had had HIV-negative children. When Dorelis, for example, was diagnosed with HIV at age 17, in 2002, she moved to the sanatorium in her province. 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. She had had an abortion at age 13 and this time decided to have the child. Although at first she was concerned that she could transmit HIV, Dorelis stopped worrying when she initiated prophylaxis at 13 weeks of pregnancy. 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 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. (By Sean Sprague / Global Aware) |
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. Only three women stated feeling pressured by their doctors or family to seek an abortion. Vanessa was diagnosed with HIV in 2000 at age 25 after having had a healthy child. After the diagnosis, however, she had three induced abortions. At the sanatorium in Pinar del Río, she planned a pregnancy with her partner after they were told that there was a 70% chance that her child would be born HIV-negative. 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 birth of her daughter in 2005 radically changed her life to a positive experience; her plans are “to keep going, to keep living.” 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.
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.” 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.
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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; pathology is always embedded in social experience. As these women’s stories make clear, the social course of HIV in Cuba has taken a unique turn. 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
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. 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 Mozambique as an internacionalista (international aid worker); his wife subsequently tested positive. 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 donations.11 The imported kits were distributed to all the blood banks and centers for hygiene and epidemiology of the island; by 1986, all blood donations were screened for HIV—an initially expensive measure that prevented blood recipients from becoming infected with the virus. 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. 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.
Arachu Castro is Assistant Professor in the Department of Global Health and Social Medicine at Harvard MedicalSchool. Yasmin Khawja is a student at the Albert Einstein College of Medicine in New York. Ida González-Núñez is a pediatrician at the Pedro Kourí Institute of Tropical Medicine in Havana.
1. This article is a revised version of “Sexuality, Reproduction, and HIV in Women: The Impact of Antiretroviral Therapy in Elective Pregnancies in Cuba,” AIDS 21 (2007): S49–S54. The authors are grateful to all the women living with HIV in Cuba who shared their life experiences with us. Arachu Castro is thankful for the generosity of Harvard Medical School’s Office for Faculty Development and Diversity (through its Bridge Award of the Minority Faculty Development Program), Atlantic Philanthropies (grant number 14217), and the Ford Foundation (grant number 1055-0735, made to the David Rockefeller Center for Latin American Studies at Harvard University).
2. J. Pérez et al., “Approaches to the Management of HIV/AIDS in Cuba,” in Perspectives and Practice in Antiretroviral Treatment (World Health Organization, 2004); H. de Arazoza et al., “The HIV/AIDS Epidemic in Cuba: Description and Tentative Explanation of Its Low HIV Prevalence,” BMC Infectious Diseases 7 (2007): 6; I. González Núñez, M. Díaz Jidy, J. Pérez Ávila, “Vertical Transmission in Cuba,” MEDICC Review 8, no. 1 (March–April 2006): 15.
3. A. Castro, Y. Khawja, and I. González-Núñez, “Sexuality, Reproduction, and HIV in Women: The Impact of Antiretroviral Therapy in Elective Pregnancies in Cuba,” AIDS 21 (Suppl 5, 2007): S49–S54.
4. UNAIDS, “Caribbean Factsheet” (2006).
5. UNAIDS, “Global Summary of the AIDS Epidemic” (2007).
6. A. Castro, P. Farmer, “Understanding and Addressing AIDS-related Stigma: From Anthropological Theory to Clinical Practice in Haiti,” American Journal of Public Health 95 (2005): 53–59; C. Abadía-Barrero and A. Castro, “Experiences of Stigma and Access to HAART in Children and Adolescents Living With HIV/AIDS in Brazil,” Social Science Medicine 62 (2006): 1219–228.
7. Castro et al., “Sexuality, Reproduction, and HIV in Women.”
8. Yeyslis’s name and those of the other women in this article have been changed to maintain confidentiality. We have attempted, however, to use names that reflect the creativeness embedded in the first names of many Cubans born in the past 40 years or the frequent use and adaptation of foreign-language names.
9. UNAIDS, “Report on the Global AIDS Epidemic” (2006).
10. J. Pérez-Ávila, R. Peña-Torres, J. Joanes-Fiol, M. Lantero-Abreu, and H. Arazoza-Rodríguez, “HIV Control in Cuba,” Biomedicine & Pharmacotherapy 50, no. 5 (1996): 216–19.
11. P. Farmer and A. Castro, “Pearls of the Antilles? Public Health in Haiti and Cuba,” in A. Castro and M. Singer, eds., Unhealthy Health Policy: A Critical Anthropological Examination (Altamira Press, 2004), 3–28.
12. Y. Hsieh, C. Chen, S. Lee, and H. de Arazoza, “On the Recent Sharp Increase in HIV Detections in Cuba,” AIDS 15, no. 3 (2001): 426–28.
13. P. Farmer and A. Castro, “Pearls of the Antilles?”
