A new report by IMPAACT4HIV Consortium has uncovered alarming deficiencies in the awareness, diagnosis and treatment of Advanced HIV Disease (AHD) among children and adolescents living with HIV in several Nigerian states.
The community-led research, covering Kano, Gombe, Rivers and Lagos States, paints a grim picture of how systemic failures, pervasive stigma and limited resources have contributed to preventable deaths among young people.
The researchers, utilising focused group discussions and key informant interviews, documented personal accounts of young individuals falling through the cracks of the healthcare system.
The chief operations officer of the Institute of Social Change Development and a member of the research team, Dr Patrick Ikani, attributed the escalating cases of AHD in children to a lack of awareness and persistent stigmatisation
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Ikani highlighted poignant examples: "One mother in Lagos admitted she had never heard the term Advanced HIV Disease before speaking with researchers. In Kano, an adolescent reportedly abandoned life-saving medication due to the unbearable stigma associated with HIV."
A tragic case in Gombe State saw a boy lose his mother, his sole confidante regarding his HIV status, leading to over a year without treatment. "By the time he reached a health facility, the virus had progressed to a dangerous stage," Ikani stated.
The executive director of Support for Women & Teenage Children (SWATCH), Dr Ramatu Garba, explained that AHD occurs when the virus progresses unchecked, typically defined by clinical stages three or four of HIV infection or a CD4 count below 200 cells per cubic millimetre.
At this advanced stage, she noted, patients become highly susceptible to opportunistic infections such as tuberculosis and cryptococcal meningitis. For children under five, AHD is diagnosed irrespective of their CD4 count.
Such severe outcomes are largely preventable through early diagnosis, consistent treatment, and adequate caregiver support. However, the study indicates that thousands of Nigerian children continue to reach this advanced stage due to failing preventative systems.
Aaron Sunday, team leader from the African Network of Adolescence and Young Person Development (ANAYD), noted the widespread lack of AHD awareness as a particularly striking finding. Across all four states, caregivers and adolescents demonstrated minimal understanding of the warning signs of advanced disease.
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In Rivers State, over 60 per cent of community participants had limited or no knowledge of AHD symptoms. Stigma was also identified as a powerful driver of the illness and mortality, with researchers documenting cases of adolescents abandoning treatment due to fear of recognition at clinics.
In Gombe State alone, three deaths in the past year were linked to individuals seeking herbal remedies after being driven away from medical care by stigma
The report also underscores a critical shortage of essential diagnostic tools and medicines. Health facilities frequently lacked CD4 count testing equipment, cryptococcal antigen tests, and TB-LAM assays. In Gombe, three patients with cryptococcal infections were discharged from a federal teaching hospital due to the unavailability of necessary medication.
A significant gap identified was the absence of dedicated AHD policies at the state level. While states adhere to national HIV treatment guidelines, none of the four studied have established a standalone framework specifically addressing advanced HIV disease. Researchers argue that this absence leads to a lack of dedicated funding, monitoring, and a coordinated strategy to tackle the problem effectively.
