Opinion: Reigniting the global fight to end AIDS in children and youth

As HIV researchers, advocates, community leaders, and people living with HIV from across the globe converge in Mexico City this week for the International AIDS Society’s annual conference, the conversation will be a decidedly mixed bag. When it comes to children and youth, the community will have to acknowledge some very real setbacks — and raise an alarm to spur further action around our shared goal of ending AIDS. Failure to act swiftly for kids will erode the progress we have made and will jeopardize our chances of ending the epidemic for good.

Progress on ending AIDS in children and youth is stalling. In 2016, as part of the U.N. High-Level Meeting on HIV and AIDS, the international community agreed to 2018 targets to drive ambitious but achievable accelerated action on women, youth and children known as the “Start Free, Stay Free, AIDS Free” framework. Reaching these goals for children and adolescents was meant to be a milestone of significance in the fight to end AIDS as a public health threat.

Instead, the latest UNAIDS report indicates that none of those 2018 targets were achieved — and in some regions and countries, were missed by a wide margin. These missed targets must serve as an urgent call to action for all of us, particularly as we battle public perceptions that the global AIDS epidemic is somehow “over.”

Approximately 400 children are infected with HIV every day around the world, 90% of them through mother-to-child transmission. Without treatment, half of HIV-infected infants will die before their second birthday. About 1.8 million children globally have the virus, and every one of them could live long, healthy lives if diagnosed and treated early and properly. Just as troubling, deaths among adolescents living with HIV have doubled since 2000, despite a decade-long decline in AIDS-related deaths overall. AIDS is a leading cause of death among adolescents in Africa and the second leading cause of death for this age group globally.

Gains made to date on behalf of children with HIV are precarious at best. Countries touted as early success stories are now reporting increases in mother-to-child transmission rates. And while children comprise only 5% of the global HIV epidemic, they account for 15% of AIDS mortality. This is simply unacceptable. The science behind ending mother-to-child transmission has existed for more than two decades, yet hundreds of children still become infected with HIV each day, demonstrating a clear lack of political determination versus lack of know-how.

While the HIV “treatment coverage gap” between adults and children has long been discussed, reducing the “treatment quality gap” must be our new frame of reference. When children and young people receive treatment, their viral suppression rates are dramatically lower than in adults, driven in large part by delayed treatment initiation and suboptimal medicines. Children under the age of 4 living with HIV are more likely to die of an AIDS-related cause.

But often, effective interventions for children living with HIV are not pursued simply due to price.

Pediatric medicines remain expensive and lacking in innovation. For example, point-of-care early infant diagnosis is a game-changing intervention for infants, allowing caregivers to receive same-day test results and almost immediate treatment if needed. However, scale-up has stalled due to concerns about cost, despite the fact that conventional testing means that weeks or months can pass before caregivers receive results. This gap in time without treatment can be the difference between life and death for infants with HIV.

The epidemic continues to be fueled by complicated social factors including stigma and discrimination, gender inequality, violence, and discriminatory laws and policies, which are often invoked in discussions about children, but rarely addressed in a systemic way. Overcoming such barriers requires a focus on the whole child, not just their HIV status. By recognizing these factors, including the need for psychosocial support services and empowering youth participation, the global HIV/AIDS community can more effectively address the core needs of children, families, and communities affected by HIV.

However, today, almost no data is available on the effect of stigma and discrimination on HIV-positive children and their families in sub-Saharan Africa. One of the most commonly used measures of stigma, the people living with HIV stigma index, doesn’t even gather data people under age 16. It is impossible to understand fully the stigma and discrimination experienced by children living with HIV without proper tools.

In the coming weeks, a new executive director of UNAIDS will be chosen to lead the agency in the global, regional, and national response to end the epidemic. Such leadership, in the words of The Lancet editor Richard Horton, “may determine the future fate of the AIDS epidemic.”  As agency leaders consider candidates, it is essential that they advance those who understand and prioritize the unique and often neglected agenda around ending AIDS in children and youth — or risk rolling back the tangible progress of recent years.

Providing services for children and young people is most effective when you also serve the parents, caregivers, and communities that support them. It is clear that a new chapter for both UNAIDS and the epidemic itself is upon us — and we all must do more, including organizations such as Elizabeth Glaser Pediatric AIDS Foundation, by examining our own approach and performance.

Our community must push for a global AIDS response that not only champions the needs of children and youth but also understands their inextricable link to the global goal of defeating the epidemic worldwide. We have raised the alarm, we have called for renewed urgency — but most importantly, we have made a promise to millions of children, women, and families and our work is not done until we succeed.