'Guardian Angels' for Pregnant Women with HIV

Dayana* was in shock. The 31-year-old mother had just learned she was four weeks pregnant—with twins, she’d later discover—and was trying to calm her racing thoughts as she sat in a clinic on the outskirts of Lima, Peru. She hadn’t yet collected herself when a nurse returned with more news. The results of her rapid HIV test, a required part of her pregnancy exam, had just come back. Positive.

“I was crushed,” Dayana recalls. “I felt as if the world was falling in on me. I was hopeless.”

Dayana felt completely alone in that moment, but her situation is not unique. In 2014, there were 1,000 pregnant women living with HIV in Peru and nearly 90 percent regularly took antiretroviral drugs (ARVs), according to a UNAIDS study. Pregnant women who take ARVs lower the amount of virus in their blood and, in doing so, prevent transmission to their child. 

Mother-to-child transmission of HIV can occur three ways: during pregnancy, when the mother shares blood with her developing child through the placenta; during labor and delivery, through exposure to the mother’s body fluids; and during breastfeeding, since breast milk carries trace amounts of the virus.

Global studies suggest that when women regularly take their medication, transmission rates fall to less than 5 percent. Without ARVs, that rate can jump to nearly 30 percent. Other measures help prevent transmission, such as an elective cesarean section or choosing formula over breastfeeding. But these aren’t always options for women living in parts of the world where access to quality health care is limited, and formula is expensive or hard to find.

Even when all these preventive measures are in place, they don’t necessarily stop transmission. That’s because, possibly more than anything, a positive HIV diagnosis is a mental and emotional blow. Women lose hope. They slip into depression and fail to see a path ahead. Some are abandoned or abused by partners because of their status. Others lose jobs if their diagnosis becomes public, and they struggle to make ends meet. None of these situations spark a desire to pay close attention to their health.

Socios En Salud (SES), Partners In Health’s sister organization in Peru, knows this is a reality for pregnant women living with HIV in and around Lima. Its solution? SES, in coordination with the National Program for HIV and the Peruvian Network of Women Living with HIV, launched a unique yearlong pilot program in which peer counselors—all of whom are HIV-positive themselves—contact expectant mothers and help them access the clinical and social services they need. Most importantly though, they are friends to women who, like Dayana, feel completely alone. 

Since February, SES has identified more than 130 pregnant women who tested positive for HIV at a handful of hospitals in and around Lima. Five peer counselors have reached out to them to offer support. The goal is to keep 95 percent of peer-counseled women on ARVs, and the same percent of at-risk infants on preventive treatment and formula for their first year.

While it’s too early to tell whether the newborns will test negative for HIV, SES is encouraged by results from the peer counselors’ interventions.

Take Dayana’s case. She had fallen into a deep depression and stopped taking ARVs. She lost all hope, and with it many pounds. She lived in the home of her children’s father, who helped with expenses whenever he could. That’s how SES peer counselor Katy* found her six months ago.

She was always by my side.

Diagnosed with HIV while pregnant five years ago, Katy intimately understood Dayana’s situation. She called regularly. She visited Dayana at home. She got Dayana to start on ARVs again and connected her with a psychologist at a nearby hospital.

“She was like a guardian angel,” Dayana says of Katy. “She was always by my side.”

And when there was no money for bus fares to her appointments or formula was hard to find, SES staff helped Dayana pay for transportation and found formula for her 6-month-old twins.

Peer counselors like Katy are expecting mothers’ biggest cheerleaders. They go along for prenatal appointments, encourage them to stay on ARVs, and connect them with specialists, such as dieticians or mental health professionals. Anemia is a common side effect of ARVs and can improve with better nutrition, while depression often accompanies a positive diagnosis of HIV.

Many times, pregnant women avoid seeking specialized care at hospitals because they don’t know about it or—out of shame or discrimination—don’t seek it out, says Engerid Chagua, a SES field supervisor for the program. 

More than half of the women in the SES program didn’t finish high school, Chagua says. Their limited education means job opportunities are few and far between, so many try to make ends meet as street vendors. Others rely on the income of their partner, or are single mothers who don’t work outside the home because they can’t find childcare.

That’s why it’s common for peer counselors to connect women with baskets of food, a constant supply of infant formula, and public transportation to doctors’ visits—as SES did for Dayana. These are the favors that families or friends would typically provide their loved ones in Peru, but an HIV diagnosis often strains relationships.

“Sometimes family doesn’t want to get involved,” says Chagua. “We try somehow to get them to understand that they can live alongside a person with HIV” and that their family member “needs a lot of emotional support.”

Dayana had never been close to her family. Katy filled that void and helped her get back on her feet.  

“I already feel better,” Dayana says. “I’ve gained weight. I feel more established. I feel strong enough to keep fighting for my children and everything they need.” Her infant twins are happy and healthy. So far, they—and her other four children—test negative for HIV.

“All the problems that I have, I put them behind me,” Dayana says. “I don’t pay any attention to them anymore, because I know it doesn’t help me. I prefer to look ahead, thanks to God’s will and with the help of Katy and Socios En Salud.”

*Names were changed or shortened out of respect for the women’s privacy.