Twenty-two-year-old Marina, a mother of four, assumes she has kept her HIV positive status a secret from her husband. However, it is likely that he knows as he too is probably HIV positive and has just finished treatment for tuberculosis, says Patricia Arnez, the coordinator of the prevention of mother to child transmission (PMTCT) of HIV programme at the Centro de Salud 18 de Marzo, in Santa Cruz.
Marina (not her real name) made the nurse promise not to disclose her HIV status to her husband and in return Marina promised to attend the clinic. Despite not disclosing her status to anyone outside the clinic, Marina, who has lost both her parents, is doing much better now, and has successfully adhered to the PMTCT programme, says Nurse Arnez. “When Marina first came to the clinic she was depressed, addicted to glue, had little hair, was poorly dressed and was too thin – now she has gained nine kilos. You should see how confidently she walks into my office,” says the nurse.
Indeed, Marina enters the consultation room with the air of someone visiting friends. Her two older daughters, aged 6 and 7, are happily sucking sweets and Marina is carrying her 5-monthold baby, the only child fathered by her husband. Marina’s other daughter, almost 2, who was born when Marina was addicted to glue, lives with her grandmother and is receiving treatment for chronic malnutrition. Marina’s husband is still addicted to glue and unemployed.
As she sits, Marina and the nurse chat and laugh together. “You’re looking so good,” the nurse tells Marina, who smiles coyly. Marina is dressed in immaculate white jeans and a sky blue T-shirt; a chunky gold chain with a cross hangs around her neck. Her hair is thick and glossy.
After a while the nurse encourages Marina to talk about her experience of living with HIV. The high levels of stigma associated with HIV in her community and fear of abandonment are Marina’s major concerns. “My husband just thinks I’m taking tablets for another illness,” explains Marina. “If he finds out, he will leave me.” Her husband, she says, is never physically violent towards her but “he doesn’t talk to me when he is angry. He has just returned home as we had a year apart,” she says. “My community too would send me away if they found out.”
Her community is situated in the tropical lowlands bordering Brazil and is under the services of the clinic in Santa Cruz. The clinic serves about 55,000 people from at least four different indigenous population groups. HIV/AIDS prevention and treatment is one of the priorities as Santa Cruz is home to 50 per cent of all the country’s HIV infections. According to official figures the HIV prevalence is 0.15 per cent. Most of the reported infections are among high-risk groups: men having sex with men, intravenous drug users and sex workers.
Although this HIV prevalence is relatively low, preventing and treating HIV in some of the indigenous communities is a huge challenge. UNICEF HIV officer in Bolivia, Dr. Carmen Lucas explains, “These communities are nomadic; many children drop out of school, teenage pregnancies and gender-based violence are a problem and unemployment is high. Sex work is sometimes seen by both men and women as a means to supplement the family income.”
When Nurse Arnez began working at the clinic five years ago, people from the indigenous groups tended not to frequent the clinic. It was only after Nurse Arnez and another nurse, Veronica Frias, worked with an anthropologist to develop innovative and culturally sensitive methods to overcome the barriers that they began to have an impact. “We learnt about the food they eat and although some of the food was strange to us, like turtle soup, we ate with them.” Also, at weekends, the nurses would join them in team sports. “We found out that the women played volley ball and the men played football, so we played with them before we gave our health messages,” says Arnez. Nurse Frias often brings her 9-year-old daughter along too. “She likes to play football, so she joins the men,” says Frias. “It has made such a difference.”
The nurses also learnt that, due to the groups’ nomadic outdoor life style, they are unaccustomed to sitting around. “When they come here, they don’t like to sit, so we try to see them first as otherwise they would leave.” says Arnez. The clinic also uses colourfully designed reproductive health and HIV posters that reflect the people’s hunter-gatherer way of life; the messages are written in the local languages as well as Spanish.
Respecting different cultures and developing culturally appropriate messages, as well as technical support from UNICEF, have yielded encouraging results, particularly in the PMTCT programme. For example, in 2007 nationally less than 4 per cent of pregnant women took the test for HIV compared to 68 per cent in 2013. In addition, in 2013, 94 per cent of the pregnant women testing HIV positive (144 women) received antiretroviral (ARV) treatment to prevent HIV transmission to their unborn child. If a pregnant HIV positive woman does not receive ARV treatment, she has a one in three chance of passing the virus to her baby during pregnancy, delivery or through breastfeeding.
In the Santa Cruz centre, of the 13 women who tested HIV positive in 2013, two dropped out of the PMTCT programme. However, the nurses’ pride is obvious when they report that all the babies of the 11 women who adhered to their programme tested HIV negative two months after birth. Mariana remembers how she brought her baby for the HIV test three months ago. “I was worried,” she says. “And then I was so happy.” The relief is visible as her face lights up with a broad smile.
She is preparing to leave, and her daughters seem to be having fun helping their mother pack the boxes of ARVs and formula milk. Just before she leaves, Marina is asked about her future. “I think only about the present,” she says.