On a recent webinar hosted by The Global Network of People Living with HIV (GNP+), participants explored the cutting-edge field of pediatric HIV cure research and the essential role of people living with HIV (PLHIV) in shaping and guiding this work. The session titled “HIV Cure Research for Children: Where Do PLHIV Fit In?”, brought together experts and advocates, including Dr. Gabriela Cromhout, an HIV cure researcher and Nomonde Ngema - an HIV cure advocate to unpack the ethical, social, and scientific dimensions of this emerging area.
According to Dr. Cromhout, while pediatric cure studies are highly promising, every trial involving children is subject to strict ethical review. “Children are a vulnerable population,” she said. “Everything goes through extensive review, from the amount of blood drawn to the way we tailor assent forms for children who may not yet know their HIV status.” This flexibility ensures that children’s autonomy and understanding are respected while maintaining the highest ethical standards.
Ngema emphasized the need for protections that consider caregivers and social dynamics. “Participation in cure research should never expose children or caregivers to forced disclosure, stigma, or undue pressure,” she said. Privacy, transparent communication, psychosocial support, and ongoing engagement are all critical to safeguarding well-being. She stressed that the research process should account for real-life social contexts, recognizing the heavy emotional burden caregivers often carry.
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A key focus of the discussion was the Azaphile study, a sub-study of the Baby Cure Cohort (Ucwaningo Lwabantwana cohort). Dr. Cromhout explained that children enrolled in this study, who started treatment very early, often within days of birth, are monitored under an analytical treatment interruption (ATI). This approach carefully pauses antiretroviral therapy under close supervision to test whether children’s immune systems can control HIV without medication. The study is helping researchers understand how to target the virus and the immune system for potential long-term remission, while ensuring participants’ safety. “We are incredibly excited that this research is happening in Africa, the region most affected by pediatric HIV,” Dr. Cromhout noted.
Questions from participants highlighted the practical and ethical challenges of pediatric cure research. When asked about the scientific hurdles in finding a cure for children, Dr. Cromhout explained that children’s smaller blood volumes, the virus’s complexity, and individual immune responses all make pediatric research uniquely challenging. Pertaining the availability of long-acting antiretroviral therapies for children and whether a cure would ever be imposed on someone, both Dr. Cromhout and Ngema reassured attendees that cure research would remain voluntary, ethically guided, and contextually appropriate.
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The session closed with reflections on the importance of PLHIV leadership. Ngema encouraged researchers and funders to “not let humanity get lost” in scientific pursuit, ensuring that the voices of those directly affected remain central to decision-making. Florence Riako Anam, GNP+ Country Editor, thanked the speakers and participants, highlighting that such webinars are crucial for bridging the gap between research, policy, and community trust.
As Dr. Cromhout, Ngema, and GNP+ emphasised, pediatric HIV cure research is not just about science, it’s about ethics, community engagement, and centering the lived experiences of PLHIV. With continued dialogue, transparency, and collaboration, the field is moving toward a future where children living with HIV can benefit from advances in treatment and potential cures, safely and respectfully.
