Photo by Juanma Rada for the Proyect HIV Bolivia of Hivos . Licence Creative Commons.

This story was written by Dayana Martínez and published in Muy Waso on December 13. It was republished on Global Voices under an media partnership agreement. This text received the Second Honorable Mention of the 2023 National Feminist Journalism Award organized by Muy Waso.

When Mariela, whose real name we are withholding for security reasons, received an HIV-positive diagnosis, her husband refused a test and decided to abandon their family. Hers is the reality of hundreds of women with HIV in Bolivia. Not only do they face prejudice and discrimination, they are also often abandoned by their partners and must struggle to take care of their health and their children through informal work.

In Bolivia, three out of ten women are heads of households. In the case of single-parent families, 81 percent of homes are supported by women. Both sets of data come from the National Institute of Statistics of Bolivia (INE).

But the numbers could be higher in the case of women with HIV: more than 3,000 women living with HIV are heads of households, according to figures from the World Bank. This represents around 42 percent of the total women diagnosed with the virus. Many of the statistics on this population are projections from leaders of the National Network of People Living with HIV and AIDS (RedBol), a Bolivian organization that provides support and information to support patients in the country since there is no data from the state on how many men abandon their partners and families when they find out they are living with HIV. The State also does not have clear data on how many women with HIV are responsible for supporting their daughters and sons who are often also HIV positive.

Immersed in informality

In Bolivia, 80 percent of the general population works in the informal sector. Of that total, approximately nine out of every ten are women, according to data published by the International Labor Organization (ILO) in 2022. The typical profile of Bolivian women in the informal sector are adults Indigenous women with primary education who are often dedicated to commerce.

These figures are also reflected and expanded among women with HIV. Virginia Hilaquita, vice president of Redbol, quotes figures from the organization:

Si vemos a la población con VIH, incluso llegamos al 90 por ciento de personas que no tienen un trabajo fijo. La mayoría no tenemos trabajo. Las mamás salen a vender y viven del día.

If we look at the population with HIV, we see 90 percent of people who do not have a permanent job.  Most of us simply don't have jobs. The mothers go out to sell and live from day to day.

The pandemic: No tests, no medicines

During the pandemic, many people were forced to stop their antiretroviral treatments, which help control HIV symptoms. Restrictions on movement and travel prevented patients from going to health centers to receive their medications. This is how, especially those who lived in rural areas, were most affected. While COVID-19 absorbed laboratories, beds, and personnel, areas dedicated to HIV diagnoses were left behind and without resources. The percentage of cases of late-stage HIV rose considerably due to the pandemic.

José Armando Sandoval, the person in charge of the STI/HIV/AIDS program of the Departmental Health Service in Chuquisaca, a department in south Bolivia, explains that:

Los casos cautivos no diagnosticados durante la pandemia comenzaron a ser diagnosticados en 2022 y este 2023 (…) Muchos de estos fueron tardíos, es decir, pacientes en etapa sida. Normalmente teníamos menos del 10 por ciento, ahora hemos llegado al 15 y 20 por ciento. Esos casos tienen una menor esperanza de vida. La mitad muere al año de su diagnóstico, la otra mitad vive dos a tres más.

The captive cases not diagnosed during the pandemic began to be diagnosed in 2022 and 2023 (…) Many of these were  cases were already in the AIDS stage. Normally we had less than 10 percent of late-stage cases, now we have reached 15 and 20 percent. These cases have a lower life expectancy. Half die within a year of their diagnosis, the other half live two to three more.

This implies a risk for public health because the longer a person is unaware that they have HIV, the more likely they are to engage in risky sexual activity, Sandoval explains. Due to this situation, alerts were activated in some departments of the country. In Chuquisaca, for example, in April 2022, an orange alert was declared due to the increase in HIV-positive people.

Gender gaps in diagnosis

In Bolivia, there are two men with HIV for every woman living with the virus, according to RedBol figures. Unlike men, most women are diagnosed during their pregnancy. Since 2007, rapid HIV tests have been mandatory for pregnant people in Bolivia. It is because of these tests that many adolescents find out that they have HIV since they would not be able to access them without the written permission of their parents.

Hilaquita explains that HIV today affects increasingly younger people, which shows the need to improve the sexual health education systems around contraceptive methods to avoid unwanted pregnancies and prevent the transmission of HIV and other infections or diseases:

Ahorita la epidemia del VIH se concentra entre los 14 hasta 30 años. Antes era de 20 a 35 y a 40 años.

Right now the HIV epidemic is concentrated between 14 and 30 years of age. It used to be 20 to 35 and 40 years old.

Teenage pregnancies and HIV

Since the first diagnosis of HIV in Bolivia, registered in 1984, until the first days of June 2023, 124 cases have been registered in girls and adolescents between 10–14 years old and 40 in boys of that same age, according to government data. Among cases aged 15–19 years old, 1,951 were diagnosed in men and 2,183 in women.

In these two age groups, more women are identified as having HIV than men. “If we talk about children under 18 years of age, the majority of those diagnosed with HIV are women,” says Sandoval. This is also reflected at the international level. In Latin America, women represent 29 percent of new cases, while among those aged 15–24 this percentage rises to 36 percent, according to UNAIDS figures.

When asked if the cases of pregnant minors are a consequence of sexual crimes, Sandoval says that this information is not considered in the statistics. But, with his 11 years of experience in Chuquisaca, he warned that a large number of these cases involve teenage parents.

However, until October 31, 2023, the Public Ministry registered more than 10 cases of statutory rape or rape against children or adolescents every day. In Chuquisaca, one of these complaints arises every day and a half.

Regarding rape, Sandoval only remembers one case: a father who raped his nine-year-old daughter and transmitted HIV to her. “They arrested him in my office. He died in prison from AIDS,” he adds.

Although there is no data on cases of HIV transmission through sexual crimes, the media have recorded several incidents in the last year. Like one in Cochabamba, in which a father with HIV raped his wife and four daughters in May 2022. Or the case of a 10-year-old boy in Yapacaní, Santa Cruz, who was raped by four men with HIV who left him in intensive care in June 2022.

The biggest q'epi

Translation note: the q'epi is a form of the textile art of Bolivian women. It is a colorful cloth tied to the back that works as a backpack. They are pieces that accompany women throughout their lives, which is why they have a symbolic relationship with their stories, dreams, and regrets.

Every day, women face unequal treatment in society that affects their lives. From the way they dress to the way they exercise their sexual and reproductive rights. “When you have HIV your q’epi is bigger,” reflects Hilaquita. “They tell you ‘she's probably a whore, she probably got sick like that.'” Women with HIV suffer greater discrimination, including in health services. Daughters of women with HIV who decide to have children are also discriminated against.

This situation affects people with HIV in such a way, especially women, that a kind of self-censorship prevails on them. When they are not excluded or discriminated against, they seem invisible in the eyes of society and the State.