How Community Support Is Transforming Lives in Advanced HIV Disease Care
Starting treatment for advanced HIV disease (AHD) is a critical first step, but outcomes depend on whether people can stay on treatment. Under the Unitaid-funded THRIVE project, led by CHAI in partnership with AFROCAB and Penta, AFROCAB AHD Champions in Zimbabwe support people through the period after diagnosis, when the risk of falling out of care is high. The stories of Linnet and Memory show what that support looks like in practice.
Linnet: Returning to Care
At just 26 years old, Linnet’s journey with HIV had already been marked by significant challenges. Diagnosed in December 2021 while living in South Africa with family, Linnet struggled to remain engaged in treatment. During this period, she experienced alcohol and substance use and, at one point, stopped taking her treatment.
When she eventually returned home to Zimbabwe, her health had begun to deteriorate. After three weeks of persistent abdominal swelling, she sought care. Tests showed a CD4 count below 200 cells/mm³, indicating AHD.
Linnet was re-initiated on antiretroviral therapy (ART) and received comprehensive AHD screening and baseline assessments. Importantly, at the clinic, she was connected to Elizabeth Ndana, an AHD Champion working with AFROCAB under the THRIVE project.
Further screenings at the clinic identified another health condition, for which Linnet was referred to a provincial hospital for further treatment. Elizabeth and the AHD Champions continued supporting Linnet, maintaining communication with her grandmother, reinforcing the importance of adherence, and helping monitor her progress. This post-diagnosis care and support became critical in helping Linnet stay connected to treatment rather than slipping out of care again.
For someone who had previously stopped ART for months, taking medication consistently represented a major change.
Working together, her healthcare providers and the AHD Champions kept Linnet connected to care. She began taking her ART and post-procedure medication consistently and attended her scheduled appointments. Over time, those small but consistent actions began producing visible results.
At follow-up, Linnet reported that the abdominal swelling had noticeably reduced and her overall health was improving. Her CD4 count was also rising, and her grandmother confirmed that she was taking her medication on time. Today, Linnet remains in care and is responding well to treatment.
Memory*: Closing the Gap Between Clinic and Home
Memory began ART in early 2026, at around two and a half years old. She was critically ill, with an oral infection that made swallowing difficult, rapid weight loss, and a low CD4 count of 125 cells/mm³. She was admitted to a pediatric ward in Bulawayo for treatment.
For Memory and her mother, however, starting treatment was only the beginning. Staying consistently on treatment presented its own challenges.
Memory had been born prematurely, and her mother was cautious in situations that she worried might worsen her health. On one occasion, she missed a medication refill because of cold weather. Work commitments also made clinic visits difficult.
Memory’s viral load later came back at 1,023 copies/mL, above the threshold for viral suppression. Interruptions in ART during her concurrent TB treatment were identified as a contributing factor.
Recognizing the need for additional support, a THRIVE AHD Champion, Kate Bonore, began actively following up on Memory’s case, extending care beyond the health facility and into the home. After a first visit in which the family could not be located, a second visit allowed Kate to speak directly with Memory’s mother about consistent dosing, timely refills, and regular clinic follow-up. Her mother also received enhanced adherence counseling, including an explanation of what may have contributed to the elevated viral load.
Kate continued to send reminders ahead of review and refill appointments, and when the family returned to the clinic, efforts were made to ensure Memory received clinical review, medication refills, and routine monitoring in a single visit.
Through repeated counseling, home visits, and appointment reminders, Memory’s mother came to understand the importance of consistent ART and regular clinic visits.
Memory is now adhering well to treatment, and her viral load has fallen to 20 copies/mL, meaning the virus is suppressed. Her mother remains engaged in her daughter’s care and ensures Memory receives the follow-up she needs.
The important role of community in AHD programs
Linnet and Memory faced different barriers, but both show that providing medication is only one part of successful HIV care. For people navigating illness, substance use, work responsibilities, and other everyday barriers, continued follow-up, practical adherence support, and a trusted connection between the clinic and the home can make the difference between treatment interruption and recovery.
*Name changed
Through the generous support of Unitaid, the Clinton Health Access Initiative (CHAI)-led THRIVE Project is enabling access to critical prevention, screening, and treatment commodities for advanced HIV disease to dramatically reduce mortality among adults and children living with HIV. The THRIVE project is conducted in partnership with AFROCAB and Penta.
Disclaimer: The views expressed are those of AFROCAB and do not necessarily reflect those of Unitaid or other partners.
