Imagine having to travel for hours to a faraway health facility to get regular, critical care—even though there’s a similar facility just down the road from your home.

This is what Luis*, 49, struggles with in Western Guatemala. He wants to get the HIV care he needs, earn a living, and maintain his privacy all at the same time—but it’s difficult.

“In [the closest] HIV clinic, there is a cleaning lady who lives a couple of blocks from my home,” he says. “If she sees me, the whole village will know I am living with HIV.”

Clients like Luis fear social retribution, and worry that they won’t be offered work if their HIV-positive status is found out. Luis opts not to seek care in the nearest hospital for this very reason. And due to employment reasons, he’s had to drop out of HIV treatment several times in the seven years since he was diagnosed.

In Central America, where IntraHealth International leads the USAID | Central America Capacity (CAMPLUS) Project in El Salvador, Guatemala, Honduras, and Panama, social stigma is one reason why clients abandon their treatment plans. For some, the financial burden of traveling to a faraway health facility is too great—but so is the risk of running into someone they know closer to home. It’s a double bind.

Community Liaisons

According to UNAIDS, 112,000 people are living with HIV in these four countries. During October 2016 to September 2017, 25% of people living with HIV were not adhering to their antiretroviral therapy (ART), based on viral load results at HIV clinics.

To increase this number, health workers called community liaisons are tracking down clients who have dropped out of treatment.

The work is challenging. Community liaisons must search for vulnerable clients in isolated, hard-to-find places, while balancing discretion with a commitment to care. Once they find the clients, the liaisons can offer instruction on how to adhere to ART regimens and discuss ways to overcome the practical and personal obstacles clients face.

Pascacio Colop is a liaison in Quetzaltenango, Guatemala. He knows the importance of protecting patients’ privacy and earning their confidence to get them back to treatment.

“We must gain the patients’ trust,” he says. “Oftentimes clients drop out HIV treatment for fear of stigma and discrimination. Because of this, I introduce myself to them as a friend, not as a hospital employee.”

Poor adherence to treatment puts patients at risk of transmitting HIV to others, virus mutation, and secondary infection. By keeping their viral load at undetectable levels through a strict treatment regimen, they give the virus less of a chance to develop resistance—and themselves a greater chance of living a long and healthy life.

By conducting home visits, community liaisons represent a caring and respectful arm of the health care system. It’s this personal touch that ultimately compels many clients to recommit to ART.

“Having someone take the time to come to their home and say that they are concerned about their health and their lives is what finally drives a patient to resume treatment and become adherent,” Pascacio says.

An Advocate for Access

Community liaisons are resourceful and persistent. They advocate for people living with HIV and work with support organizations within the hospital to provide resources for client transportation, or even help deliver patients in need to the health facility.

Rodrigo,* 34, and his partner Gisela,* 33, were able to call upon their community liaison, Victor Arriaga, when Gisela’s health deteriorated after dropping out of treatment.

“We did not know who to call,” Rodrigo says. “The ambulances charge for fuel. So we called Don Victor. Thanks to him, she is alive.”

Community liaisons provide information in a culturally sensitive, thoughtful way.

“I have had some cases of patients reporting they are taking a medicinal plant, or saying the church pastor told them God cured them,” Pascacio says. “In those cases, we explain, with respect for their beliefs, how the virus works in their bodies and what they need to do to be well.”

According to Dr. Ana Gómez, Coordinator of the HIV Clinic of the National Hospital of the West, Quetzaltenango, "the search for treatment dropouts is a key intervention conducted with the support of the USAID | Capacity Project. We have recovered people who we considered lost. This approach is very valuable, since it combines institutional efforts with community action.”

982 People Back on Treatment

Finding people isn’t always easy, and liaisons have learned that it’s most effective to begin searching as early as possible when clients stop coming for treatment. As more time goes by, it becomes increasingly difficult to recover them.

From October 2016 to September 2017, 29 community liaisons in El Salvador, Guatemala, Honduras, and Panama set out to find 5,658 people marked in facility records as having dropped out of HIV treatment. Many of those people had died. In fact, the liaisons confirmed 2,510 deaths. And while 2,166 remain unfound, mostly due to a lack of contact information in the records, the liaisons recovered 982 dropouts through home visits.

The difference for those 982 individuals was the compassion shown to them by dedicated community liaisons.

Maria Jose, a liaison in dangerous gang-controlled areas of El Salvador, says that people feel valued when they get a visit from her.

“‘Seriously, you are concerned about me? You came to see me?’ patients always ask,” she says. “And this makes me proud to be a part of their recovery—that with these small actions, I can improve their quality of life.”

*Names have been changed.

The UNAIDS 90-90-90 goals stipulate that by 2020, 90% of people living with HIV will know their status, 90% of people with diagnosed HIV infection will receive sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy will have viral suppression. Adherence is vital to achieving these goals.

Renato Hernandez contributed reporting for this story.