The warning comes in the wake of findings released by the IMPAACT4HIV Consortium, which conducted research across Lagos, Kano, Rivers, and Gombe states to assess the challenges affecting children living with HIV and their caregivers.
Lack of Awareness and Early Intervention
Presenting the findings to journalists in Abuja on Friday, Dr. Ramat Garra, Executive Director of Support for Women and Teenage Children, said many cases of advanced HIV disease could be prevented with greater awareness and early access to treatment.
The study, which employed focus group discussions and key informant interviews, revealed that many caregivers and community members had little or no understanding of AHD or its warning signs.
“In Rivers State, over 60 percent of community participants showed little to no understanding of AHD warning signs, while caregivers at HIV clinics in Kano said they had never been informed about the condition,” Garra noted.
This lack of awareness, she explained, often delays medical intervention until the illness has progressed to a critical stage.
Stigma Compounds the Problem
Stigma was identified as a major factor contributing to the worsening health of children and adolescents living with HIV. Many adolescents reportedly stop taking their medications due to fear of being seen at clinics, while some parents delay disclosing their children’s HIV status, allowing the disease to advance unchecked.
“In Gombe State, three people reportedly died in the past year after stigma pushed them toward herbal remedies instead of seeking medical care,” Garra added.
Diagnostic Gaps and Treatment Challenges
The consortium’s report highlighted serious gaps in diagnostic capacity at many health facilities, including the unavailability of CD4 count tests, Cryptococcal Antigen tests, and TB-LAM assays—critical tools for detecting advanced HIV disease.
Shortages of testing reagents in Kano were found to cause delays in diagnosis, while some patients with cryptococcal infections in Gombe were discharged without treatment due to medication shortages.
The study also revealed that none of the four states studied has a standalone policy addressing Advanced HIV Disease. Instead, they rely on general national HIV guidelines, resulting in insufficient funding and persistent gaps in the management of advanced cases.
Financial Barriers and Care Access
Experts further highlighted the financial burden faced by many families. Although HIV treatment is officially free, indirect costs such as transportation continue to limit access. In Rivers State, a change in drug pickup frequency increased travel costs for caregivers, while in Gombe, some case managers used personal funds to help patients access treatment.
Calls for Policy and Programmatic Action
Aaron Sunday, Executive Director of the African Network of Adolescents and Young Persons Development, urged governments, donors, and healthcare providers to intensify efforts to address the growing challenge. He called for state governments to develop dedicated policies on Advanced HIV Disease with specific budgetary allocations and to strengthen adolescent-friendly HIV services.
Sunday also emphasized the need for the National AIDS and STDs Control Programme and implementing partners to ensure consistent availability of critical diagnostic tools, as well as integrating AHD screening into paediatric, tuberculosis, and prevention of mother-to-child transmission services.
Consortium Recommendations
The IMPAACT4HIV Consortium—which includes the African Network of Adolescents and Young Persons Development, Initiative for Sustainable Community Development, and Support for Women and Teenage Children—stressed that addressing stigma, improving diagnostics, and expanding community awareness are key to preventing avoidable deaths among children living with HIV in Nigeria.
By improving early detection, ensuring treatment adherence, and reducing the social and financial barriers to care, experts say Nigeria can significantly reduce the burden of Advanced HIV Disease among its most vulnerable populations.