South Africa: Why People Living with HIV Matter in Cure Research for Children

For more than 40 years, scientists have chased a virus that refuses to stand still. HIV mutates quickly, hiding in long-lived cells and forming what are known as viral reservoirs, one of the main reasons there is still no cure. Outside the lab, some believe a cure is being held back to protect profits from lifelong treatment. Meanwhile, prevention science is moving fast, with long-acting options like twice-yearly lenacapavir hailed as breakthroughs. But even with new prevention tools, many people living with HIV are still asking the bigger question - when will there be a cure?

The Global Network of People Living with HIV (GNP+) HIV Cure Desk hosted a discussion on HIV cure research for children, the ethical considerations involved, and the critical role of hashtag #PLHIV in shaping research and building community trust. Dr. Gabriela Cromhout and Nomonde Ngema explored the realities, opportunities, and ethical questions around HIV cure research for children, and the critical role of people living with HIV (PLHIV) in shaping research priorities.

Crombute leads a cohort in KwaZulu-Natal known as the Ucwaningo Lwabantwana cohort - a name drawn from isiZulu that loosely translates to - learning from children. The study follows mothers and babies where HIV transmission occurred in utero. The children are enrolled from birth and followed closely over time. This year, the oldest participants turn 11.

“The whole idea,” she explains, “is to see whether early treatment can be used as a mechanism to help with the cure.”

But in HIV science, even the word cure is complicated.

Cure or remission?

In adult HIV research, the term ‘cure’ is often used as an umbrella. Scientists distinguish between a “true cure” - complete eradication of HIV from the body - and what is more realistically being pursued today, sustained remission without antiretroviral therapy (ART). In remission, the virus is not eliminated, but it is controlled by the immune system without daily medication.

“In pediatric cure research, what we are really looking at is ART-free remission,” Crombute says. “Not necessarily eradication, but control without ongoing treatment.”

That distinction matters. For families raising children born with HIV, the daily pill is both a miracle and a burden. Modern ART allows children to grow, attend school, and imagine full adult lives. But adherence is lifelong. Access can be fragile. Stigma lingers. And as children age into adolescence, maintaining consistent treatment becomes more complex.

“Yes, treatment is amazing,” Crombute says. “But remembering to take it every day - and having access to it - is still a burden. Removing that burden is something we would all love to do.”

The science behind pediatric cure research rests on a paradox - children are biologically different from adults in ways that may actually offer unique opportunities.

“Children are not little adults,” she says. Their immune systems function differently. In the pre-ART era, infants progressed faster to severe disease than adults. But when started on treatment very early - sometimes within days of birth - that same adaptable immune system may limit the size of the viral reservoir, potentially making remission more achievable.

Early ART is central to the Ucwaningo Lwabantwana cohort. By starting treatment as soon as possible after birth, researchers hope to understand whether shrinking the reservoir early in life creates conditions where, one day, carefully monitored treatment interruption could lead to sustained control.

Yet pediatric cure research is not just about biology.

The ethics of involving children

Working with children introduces ethical and social complexities that adult studies do not face.

In South Africa, individuals under 18 cannot legally provide full consent to participate in research. Children aged seven and older can give “assent” - an age-appropriate agreement - but parents or guardians must provide formal consent. Disclosure is another sensitive issue: many children born with HIV are not told their status until later childhood.

“You’re not just working with a child,” Crombute says. “You’re working with a family unit.”

Grandmothers, mothers, siblings - entire households are part of the ecosystem that determines whether a child makes clinic visits, takes medication, and understands why they are enrolled in research. Cure science, in this context, must be family-friendly, culturally sensitive, and transparent.

The emotional weight of hope

For Ngema, an HIV advocate born with the virus, cure conversations are deeply personal.

“When I was a child and I learned about my status, one of the first questions I asked was: Will I ever be cured?” she recalls. The answer then was simple - no cure exists.

Years later, she found herself invited to an HIV cure meeting. Her first reaction was suspicion. “Is this real? Is this a cult?” she says. But inside the room, she encountered scientists explaining ongoing research - not promising miracles but sharing the work.

“It restored my imagination,” she says. “For the first time, I could envision my life beyond HIV.”

Cure messaging, Ngema says, must be grounded in scientific honesty. Words like ‘breakthrough’ generate headlines and clicks. But for young people living with HIV, they can also create false expectations.

“When people see ‘breakthrough,’ they think it means accessible,” she says. “And when they realize it’s still experimental, it creates cycles of disappointment.”

The solution, Ngema insists, is consistent language - always say “HIV cure research.” Emphasize that it is ongoing, evolving, and uncertain.

“Hope is important,” she says. “But honesty is more important.”

Profit, prevention, and public trust

The cure debate also unfolds against broader skepticism about the pharmaceutical industry. In some communities, there is a persistent belief that a cure already exists but is being withheld to protect profits from lifelong ART.

Crombute challenges the idea. HIV cure research is scientifically complex, expensive, and filled with uncertainty. Unlike treatment - which suppresses viral replication - a cure must eliminate or permanently silence every reservoir cell. The virus’s ability to mutate and integrate into host DNA makes it extraordinarily difficult.

At the same time, prevention science has made striking advances. Long-acting injectable options like lenacapavir, administered twice yearly, have been celebrated as transformative for prevention. They reduce the daily burden of pills and offer discreet protection. But they are not cures, and they do not address the millions already living with HIV.

Prevention and cure research, Crombute says, are not competing agendas. They are parallel tracks in a comprehensive response.

Growing up with HIV - and with science

As the children in the Ucwaningo Lwabantwana cohort approach adolescence, new questions emerge. How will they experience their participation in research? How will disclosure shape their identity? Will the early-treatment advantage translate into measurable remission outcomes in the future?

For now, the study continues - collecting data, building trust, and contributing to a global effort that remains incremental rather than explosive.

“There was a time when pediatric treatment was a grey area,” Ngema says. “Now children are part of the cure conversations. That makes me happy.”

There is still no cure. HIV still mutates. Viral reservoirs still hide. Scientists still debate definitions. Advocates still demand careful language. Communities still question motives.

South Africa: Why People Living with HIV Matter in Cure Research for Children

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