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Preventing Deaths in the Shadows: Pediatric HIV Care on the Frontlines of THRIVE

  • THRIVE
  • Jul 1
  • 3 min read
Mukasa's* Story


Saving Lives Through THRIVE's Community Champion Work

HIV-related mortality remains unacceptably high and far from global targets. In 2023, 630,000 people died from AIDS – more than one death every minute, with children bearing a disproportionate burden.


Global funding cuts are now threatening to reverse decades of progress, increasing the risk of illness and death, particularly among the most vulnerable children and adults who will be the first and hardest hit. These sudden disruptions to global health funding have had a significant impact on HIV service delivery in low- and middle-income countries.


In Uganda, when the stop-work order was issued, key HIV services were suspended indefinitely. One of the people affected was Rogers Balyejusa, a dedicated HIV index testing focal person whose role, previously supported by a CDC-funded project, was terminated due to the funding freeze. While some projects and activities resumed in varying capacities within two weeks, many community health worker (CHW) contracts were ultimately not renewed.

 

But Rogers didn’t walk away. Determined to continue serving his community, he returned to the clinic as a volunteer. Through support from the Unitaid-funded, CHAI-led THRIVE Project, Rogers was recruited and trained as an AHD (advanced HIV disease) Community Champion. His training focused on the WHO STOP AIDS package of care for children and adolescents.

 

2-year-old boy newly diagnosed with HIV and TB
2-year-old boy newly diagnosed with HIV and TB

One day at the hospital, Rogers noticed a mother and child, Mukasa*, who seemed unwell. He spoke to them, conducted HIV tests, and confirmed both were HIV-positive. He immediately referred them for further tests. Mukasa, just two years old and never previously tested, was diagnosed with both HIV and TB, and was severely malnourished. He was admitted to the hospital. At times, Mukasa’s condition became critical. Throughout the hospital stay, Rogers remained by the family’s side, checking in regularly and offering support. When they considered leaving early, before Mukasa was stabilized, Rogers gently but firmly explained the risk and the importance of completing treatment. Musaka stayed. After 2 weeks, he was stabilized and discharged home.

 

But Rogers didn’t stop there. After discharge, he visited the family at home to ensure Mukasa was adhering to treatment. During the visit, he learned that the father had abandoned them. Worried about the risks of post-discharge mortality—a known danger for children with AHD—Rogers brought in Sarah Kulabako Lugolobi, a THRIVE AHD Community Facilitator, to continue follow-up and ensure the child and mother stayed connected to care.


Post-discharge mortality in infants and children is particularly high. In one study, 46% of infants died within a 6-month follow-up period.¹

Integrated, community-centered support is a core foundation of the THRIVE Project. Led by CHAI in partnership with AFROCAB and Penta, THRIVE focuses on delivering life-saving care to people living with advanced HIV disease (AHD), with an emphasis on children. The project centers local leadership and community-driven solutions to reach people living with AHD right where they are. Working closely with national governments, CHAI and AFROCAB strengthen health systems at every level to ensure that no one—especially not vulnerable children—is left behind. For children like Mukasa, this work means the difference between life and death. 

THRIVE AHD Community Champion, Rogers, and Facilitator, Sarah, Entebbe, Uganda  
THRIVE AHD Community Champion, Rogers, and Facilitator, Sarah, Entebbe, Uganda  

THRIVE's engagement at the community level, including through champions like Rogers and Sarah, is helping prevent the silent epidemic of pediatric HIV mortality – children who too often die unnoticed and untreated. Their work is a powerful reminder: even in the face of funding cuts and uncertainty, the will to serve—and save—remains strong.


Across countries, the global funding cuts have severely disrupted HIV and AHD services. While Rogers was able to intervene in time with support from the THRIVE project, too many other children are left undiagnosed or drop out of care. Urgent action is needed from the global HIV community to ensure the continuity of essential care, especially as service disruptions are expected to lead to an increase in AHD cases. 


*Name was changed for privacy

1. Nduna, B., Moraleda, C., Sacaral, J., Beinomugisha, J., Zulu, I., Chitamatanga, M., Iroh Tam, P.-Y., Chawinga, C., Fernandez, S., Ballesteros, Á., Passanduca, A., Tagoola, A., Atibo, R., Nansera, D., Bwakura-Dangarembizi, M., Gambi, L., Mvalo, T., Madrid, L., Macmillan, B., Musiime, V., Moh, R., Buck, C. W., Chabala, C., Tagarro, A., Rojo, P., & Trial Empirical. (2023). High mortality in African infants living with HIV hospitalized with severe pneumonia. BMJ Global Health. https://doi.org/10.1136/bmjgh-2023-EDC.3

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.  






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