“I did not know why I had to take these pills every day. I did not understand my mother’s insistence that I take them,” says Béatrice (name has been changed to protect her privacy), who is 26 years old. For years, Béatrice took medication without knowing why, even when she was not sick.
“When I was five, my mother told me I had a cough, so I had to take my medicine,” she recalls.
At the age of 12, everything changed when Béatrice was integrated into a support group for children in her hometown of Lubumbashi in Haut-Katanga Province in the Democratic Republic of the Congo (DRC).
Peer-based support has been a cornerstone of PATH’s HIV programming in the DRC. This support enables people living with HIV to maintain healthy and positive lives by creating and linking them into support networks to help them continue and stay adherent to HIV treatment and care.
Beginning in 2009, the US President’s Emergency Plan for AIDS Relief (PEPFAR)/United States Agency for International Development (USAID)-funded Projet Integré Contre le VIH/SIDA au Congo introduced the Child-to-Child model, a peer-based support approach that provided psychosocial and emotional support for orphans and vulnerable children living with or affected by HIV.
The program encourages children to actively promote their own well-being as well as the health and well-being of their household members.
“We started talking to each other, about everything. We became friends. I felt comfortable with them because they were also on the [same] medication as me—although I still didn’t know why. I was relieved because I wasn’t the only one.”— Béatrice (name has been changed to protect privacy)
Despite these efforts, treatment outcomes continue to lag among children and adolescents living with HIV. Treatment coverage for HIV is lower among children under 15 years of age (32%) than among adults (85%), and fewer than 90% of children and adolescents living with HIV had a suppressed viral load compared with more than 95% of adults 25 years and older as of September 2021.
To improve treatment continuity and viral suppression among children and youth, under the PEPFAR/USAID-funded Integrated HIV/AIDS Project in Haut-Katanga, PATH introduced the Operation Triple Zero approach, a youth-driven, peer-based support approach that has been successfully deployed in Ethiopia, Kenya, and Nigeria to improve adolescent treatment adherence, continuity, and suppression.
Leveraging human-centered design tactics, PATH worked with adolescents, health care providers, and government representatives to co-adapt Kenya’s Operation Triple Zero model for the Lubumbashi context. Under the DRC’s adapted Operation Triple Zero approach, three age-stratified Jeunes et Adolescents Vivant avec VIH (JADOV) clubs were created for children under 10 years of age, children between 10 and 14 years of age, and adolescents aged 15 to 18 years.
Building from a self-care mindset, each JADOV member committed to upholding the three primary “triple zero” outcomes—zero missed appointments, zero missed treatment doses, and zero viral load—with some groups opting to adopt a fourth and/or fifth zero: “zero unprotected sex” and “zero self-stigma.”
To help teenagers accept their serologic status, maintain optimal health outcomes, and prevent HIV transmission, PATH established JADOV groups in three high-volume health facilities in the greater Lubumbashi area in September 2021. Each JADOV group was led by peer group facilitators supported by health care providers at the facility each group was linked to. JADOV facilitators coordinated with health care providers to support members in:
- Using personalized strategies as daily treatment reminders, such as alarms/special ring tones and/or a designated peer contact or “treatment buddy” to support adherence.
- Sharing appointment reminders and follow-up after missed appointments via WhatsApp/SMS or home visits.
- Creating and moderating WhatsApp groups to provide a virtual support community for JADOV members.
JADOV members at Sendwe Center of Excellence conducting a campaign to raise awareness of and share strategies to prevent HIV, sexually transmitted infections, and unwanted pregnancies at a local secondary school in Lubumbashi. Photo: PATH/Gracia Chomba.
These groups also provided members with tailored peer counseling and psychosocial services.
“We were told never to forget to take our medication,” says Béatrice. She was 14 when she learned from her doctor about the nature of her daily medication and that she has had HIV since birth.
“I was upset,” she admits, thinking back to the day she heard the news. “I did not agree. I took it very badly. It was a very difficult time for me. I was young, and my dreams were crumbling before my eyes. I came home, angry at my mom; I didn’t want to talk to her or go to the support groups anymore.”
She also learned of her parents’ serologic status and the cause of her father’s death.
“I didn’t really accept living with the virus but I accepted taking the medication so I wouldn’t end up like my dad and some of my friends [who died]. I got interested in HIV, in the medication I was taking...and I understood that I had to accept it because it wasn’t going to change. It’s just the way it is,” says Béatrice. She thanks the older girls who have done so much for her and she decided to do the same for the younger ones.
After a training supported by PATH, Béatrice became a peer educator at Sendwe Center of Excellence. Her role is to enhance children’s and adolescents’ treatment acceptance and adherence to enable them to achieve and maintain a suppressed viral load. She also helps sustain positive behavior change among the group and broader community, including by holding quarterly awareness campaigns in schools about safe-sex practices.
“Adherence to the treatment is critical. I tell the children, ‘This is our weapon.’ I use the military as an example. A soldier couldn’t go into battle without his weapon. When we go to visit a friend, we take our medication with us.”— Béatrice (name has been changed to protect privacy)
In 2021 and 2022, 110 and 140 youths, respectively, enrolled in JADOV clubs with improvements in tracked outcomes each year, including increases in self-reported adherence (77% to 90%), children and adolescents with updated viral load counts (53% to 81%), and those with suppressed viral loads (71% to 94%).
Peer educators like Béatrice, and health care providers, positively impact medication-taking behaviors among people living with HIV by engaging in regular, ongoing discussions that describe the benefits of continuing and remaining adherent to their HIV treatment; meeting regularly with their doctors for health checks and having samples collected for other clinical measures that are influenced by adherence, such as viral load counts; identifying barriers to adherence and treatment continuity; offering support services; and providing information on other interventions that can improve adherence and reduce the risk of HIV transmission to others.
Despite her serological status, Béatrice has big dreams and ambitions for the future.
“I have managed to see the positive side of all this,” says the young woman, who is in university. “I [want] to become a lawyer to defend all those who are hurt by life.”
