“My parents died of HIV – almost all of my family, actually, died from HIV,” Eunice Omondi told visitors at the Rabour sub-county hospital in Kisumu, Kenya. “I, myself – I am positive, and have been my whole life.”
A 24-year-old peer leader for children and young adults, Eunice is emblematic of the uniquely challenging and complicated needs of children and teens managing an HIV+ status in the context of exceptionally difficult circumstances.
Guiding the 154 HIV-positive adolescents at the health center, she continues, “I used to think no one would ever accept me as someone living with HIV – when I came here, I was a shy person. I used to beat myself up about things, I used to cry a lot, I thought there was no future for me. Now I know better – I know there is a long future for me, and people who discriminate against those with HIV – I don’t care what they think.”
Eunice now spends her time leading children and adolescents to that same place of self-worth, dignity, and planning for the future – all at one of the 72 clinics operated by Family AIDS Care and Education Services (FACES), the HIV service delivery and research collaboration that launched in 2004 as a partnership between University of California, San Francisco (UCSF) and the Kenya Medical Research Institute (KEMRI).
For three decades, U.S. based investigators have been working in partnership with Kenyan researchers to tackle some of the most pressing global health issues in the region – which are some of the most complex in the world. As advancements in treatment and care evolve, it’s essential that leadership and execution of care sit fully with those who have an intimate understanding of communities being served and needs remaining unmet.
Nowhere is this more evident than at FACES. With funding from the Centers for Disease Control (CDC), the President’s Emergency Plan for AIDS Relief (PEPFAR), the National Institutes of Health (NIH), Children’s Investment Fund Foundation (CIFF), and generous private donors, the organization has expanded and contracted based on patient and community need – no small feat for an international partnership comprised of leaders from leading universities and Ministries of Health.
Originally operating in Migori, Homabay, Kisumu, and Nairobi counties, FACES now exclusively focuses their efforts in Kisumu County in the Nyanza Province – the region with the highest prevalence of HIV. Throughout the 72 healthcare facilities in 5 sub-counties, they serve the needs of the area’s 15.1% of the population living with HIV (nationwide prevalence of HIV in Kenya is approximately 6%; some parts of the Nyanza region have prevalence rates of 25%).
These staggering numbers made FACES a prime candidate for executing a project known as the Accelerating Children’s HIV/AIDS Treatment (ACT) Initiative, supported by PEPFAR and CIFF. With a slightly more flexible funding envelope, leadership focused the gift on designing 8 physical health clinics dedicated exclusively to serving adolescents (10 – 19-year-olds). Now, FACES is about to celebrate transitioning these clinics to the Kenyan Ministry of Health for management, including the one at which Eunice works.
A crowning achievement for the KEMRI-UCSF partnership, this move underscores how well-regarded FACES’ operations are throughout the region, and the investment of the Kenyan government in their younger generations. These adolescents are in need of particularly targeted interventions and support, highlighted at a recent site visit that explored the final construction of the clinics and future plans.
The central healthcare facility building in Rabour remains the site for general adult and pediatric care, but a short walk across the grounds takes you to newly erected trailers with exam rooms, an administrative and records office, and a health education office.
“I used to have to take a patient outside of the main building to get the privacy [they want],” says Eunice. “Now we won’t need to go somewhere to hide to talk, and I’m very excited about that.”
Painted on the side of the trailers are listings of services offered: Health Education, Preventive Health Check-Ups, Psychosocial Counseling and Support, and more, with HIV Testing Services nearing the end of list – by design.
“We want this to be a comprehensive health care clinic for adolescents – if it screams ‘HIV clinic’ then they will not come,” emphasized Maureen Ochieng, the clinic in-charge. Plus, “we do not only treat HIV – we are helping with other reproductive and sexual health issues, nutrition education, mental health issues, and more. Everyone regardless of status is welcome.”
There are plans for a billiards table in between the two trailers, and the bright colorful structures abut an open field where children and adolescents often play football or soccer. More socially engaging, holistic approaches to wellness have already turned the clinic into something of a neighborhood hub, which in turn offer an opportunity for education and outreach activities. A children’s play structure recently assembled next to the original clinic building became a community attraction.
“Children and their families would come into the clinic grounds to play on the structure, which is open to the community,” Maureen explains. “When they came in, casual conversations would start and we would ask – ‘do you know your HIV status? Do you want to get tested?’ And testing rates really did increase,” she says.
Normalizing testing and treatment is essential for taking care of oneself, Eunice adds.
Initially, “it was not easy for me to accept living with HIV. You are stigmatized a lot, you are rejected – some people didn’t see me as an important or valued person.” These same psychosocial issues are the very reason some teens are not yet virally suppressed at the clinic.
“Those [who are not virally suppressed], their biggest challenges are when they get overwhelmed and stop taking medication. Some of the children and adolescents are discriminated against so much; they are often also orphans and dealing with that pain and they kind of [give up].”
Having a regular place to socialize with other teens – HIV-positive or HIV-negative, with the presence of a dedicated leader like Eunice who can relate to their areas of struggle helps change that. This shift in perspective can be life-saving.
“HIV is not a killer, like people think it is. It’s just a condition that one has to live with. You can live with it actually very well – but it’s a decision you have to make [to care for yourself].”
This is true regardless of age, of course, and Rabour paints a picture of the scope of the work FACES undertakes in each community beyond just adolescents. Performing about 2,000 HIV tests a month, the approximately 20 patients who are subsequently identified as positive can access treatment immediately. Returning two weeks later to assess any needed medication adjustments or answer questions, patients are then scheduled for monthly visits.
Disclosure for children can be particularly challenging. Many families come in with HIV-positive children and only the parent knows of the status. When the family arrives, they are asked if the child knows their status – and if not, they work to disclose by the time the child is 6 years old. The sooner they are told, the sooner they can be educated, explain Eunice and Maureen.
“They have to know in order to take care of themselves, but also to understand and be prepared for the stigma and how to deal with it.”
And, once they know of their status, they now have a dedicated clinic space to care for their needs, answer their questions, or find an empathetic confidant.
Now that the dedicated clinics have been completed, what’s next for Eunice?
Staying right where she is, luckily. Especially on Fridays when most adolescents come to the clinic for visits, medication refills, or just affirming social interaction.
“Helping and supporting the other children and adolescents made me feel so much better about my own self, made me feel important and meaningful, and [gave me] purpose. It has changed my life in so many ways. Sometimes the children and teens come to the facility crying and so upset – but then they leave smiling after we talk, which makes me so happy.”
“I love this job,” she adds. “I think I will stay here for a very long time.”