Trust is fragile. Once it’s broken, it’s hard to get back, especially in communities that have lived for decades with HIV, stigma, and broken promises from science. If people feel misled, all the research and effort can be wasted. That’s why honesty matters as much as hope.
For people living with HIV, understanding that a cure isn’t one thing is a big first step. That detail is often missing from public conversations. Without it, people fall for misinformation, from social media scams to unregulated “miracle cures.” Cure research must be explained in plain, clear language. Webinars, community talks, printed materials, all of it matters. People should be able to make choices for themselves and their families.
A cure isn’t simple. Only a few people worldwide have been “cured,” and that was through stem cell transplants, dangerous procedures for people with life-threatening cancers. Even then, they still take medicines. There’s no magic shot. That’s why researchers are trying everything: antibodies, immune therapies, vaccines, early treatment. Multiple paths, not one silver bullet.
This is where children matter. Children born with HIV give science a unique chance. We know exactly when the infection happened. Treatment can start almost immediately, sometimes within days of birth, before the virus spreads too far. HIV plants “seeds” in the body. Medicine keeps them quiet, but they can grow again if treatment stops. Fewer seeds mean the immune system has a better shot at control.
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That’s the idea behind the Ucwaningo Lwabantwana cohort in KwaZulu-Natal. Children start treatment within 21 days and are followed for years. The study doesn’t promise a cure. It asks careful questions, How small can the reservoir get? How does early treatment shape the immune system? Why can a few children control the virus without medicine while most can’t? The answers will guide future work.
But this isn’t just science. Pediatric HIV care happens in families, in real-life contexts shaped by stigma, poverty, and fear. Many parents delay telling children about their status, sometimes until they are teenagers. Children usually figure it out before they are told. Disclosure isn’t a single moment; it’s a journey. Parents and guardians are advised to start with simple explanations about staying healthy, then slowly add concepts about immunity, illness, and eventually HIV itself.
Support is key. Parent groups, peer spaces for children, and trained facilitators help families navigate disclosure. Without it, children can feel scared, alone, or betrayed.
Looking ahead, people living with HIV must be partners in research, not observers. They need seats at ethics boards, governance meetings, and decision-making tables. Communities should shape what risks are acceptable, how consent is framed, and how research is explained. You don’t need to be a scientist to contribute, but you do need the information to ask the right questions and scrutinise assumptions.
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Children living with HIV can’t advocate for themselves. That responsibility falls on parents, caregivers, and the broader community. Living with HIV is lifelong, and research must reflect that reality. The search for a cure isn’t only about science. It’s about people. Its success depends not just on what is discovered in labs, but on who is at the table, and who is truly heard.
