Opinion: Standing up for children living with HIV amid COVID-19

This year marks 40 years since the first cases of HIV were reported. It is a particularly meaningful milestone for the Elizabeth Glaser Pediatric AIDS Foundation as it also marks 40 years since our founder and namesake, Elizabeth Glaser, tested positive for HIV after unknowingly passing HIV to her daughter, Ariel.

As we work each day to honor the legacies of Elizabeth and Ariel through our efforts to reach women, children, and families affected by HIV around the world, we are at the same time witnessing the collision of HIV and COVID-19. How do we stop COVID-19 from rolling back the progress we’ve made in HIV?

The answer lies in dropping complacency, taking urgent steps right now to prioritize children and youth, and driving action toward ending AIDS as a public health threat, all while pushing through the uncertainty of COVID-19.

The impact of COVID-19 on the global AIDS response cannot be underestimated. In September, the Global Fund to Fight AIDS, Tuberculosis and Malaria announced that, for the first time in its history, select indicators of progress in the fight against HIV — including testing rates and people reached with prevention services — had gone backward. UNAIDS also indicated that over a dozen countries have seen a decrease of 25% or more in the prevention of mother-to-child transmission services since the start of the pandemic.

Additionally, nearly 12 million women across 115 low- and middle-income countries have lost access to family planning and unintended pregnancies have risen. This correlates to an increase in HIV infections in pregnant women and transmissions to children. In a majority of the U.S. President's Emergency Plan for AIDS Relief priority countries, pediatric and adolescent treatment coverage has also dropped over the last year.

Such HIV service disruptions illustrate that the lasting impacts of COVID-19 will be felt for years to come, especially for children. Before the pandemic, progress for children living with HIV was already lagging. 

Today, 1 out of 2 children living with HIV, who are not on treatment will die before they reach the age of 2. And while children represent only 5% of people living with HIV, they account for 15% of all AIDS-related deaths globally. Only 54% of children living with HIV have access to the treatment that will save their lives, compared to 74% of adults, and only 40% of children on treatment have achieved viral suppression compared to 67% of adults.

Why aren’t children being reached at the same rates as adults?

Without a voice in the response, children have an unequal opportunity to call for solutions to their needs. Children also do not present symptoms of HIV in the same way as adults and often do not have reliable access to early testing and treatment. These harsh realities have only been exacerbated by COVID-19 as stay-at-home orders, travel disruptions, stigma, and fears of COVID-19 infection have affected service delivery.

To counter this reality, it is imperative that global and national stakeholders push through the challenges and reinvigorate a pediatric agenda. The following are bold steps that should be included:

1. Prioritize political leadership. Strong political commitment is necessary to steer the global AIDS response through the deep disruption of a new pandemic. I am encouraged by the nomination of Dr. John Nkengasong of the Africa Centers for Disease Control and Prevention by the Biden administration to lead PEPFAR.

A dual citizen of the U.S. and Cameroon, Nkengasong has used his expertise in public health and virology to champion effective and accessible approaches to pandemic responsiveness that have strengthened global health equity. This is a highly valued approach given the widening gaps and significant impacts that COVID-19 has had on PEPFAR activities.

I am also excited by the recent announcement that the United States will host the next Global Fund replenishment conference, a key moment that will determine the course of HIV, TB, and malaria resourcing and activities for much of the next decade.

However, none of this matters without greater national and local leadership at the forefront. Political leadership, not only from the U.S. government and international donors, but also within African countries where the AIDS burden is highest is particularly important if children are to be elevated within ongoing and future global and local HIV/AIDS responses.

2. Find the children. Improving efforts to find and diagnose children of all ages living with HIV is an essential gateway to improving pediatric HIV outcomes. The effectiveness of point-of-care early infant diagnosis is a well-documented game changer, yet adoption and scale up of this strategy has stalled and must be scaled up globally. Once found, children must receive test results as soon as possible, with immediate initiation of optimal treatment to improve infant mortality rates and achieve viral suppression.

3. Invest in primary prevention. Despite the significant scale up of PMTCT coverage in the last decade, new infections in children persist, especially during the breastfeeding period. Primary prevention efforts for pregnant and breastfeeding women must be intensified, including through preexposure prophylaxis and other new prevention technologies. Pregnant women need repeat testing and immediate access to treatment if they test positive. And customized services are essential for young mothers, as 43% of new infections among pregnant and breastfeeding women occur among adolescent girls and young women.

4. Drive innovation to address inequities. Children living with HIV require age-appropriate, effective, and accessible formulations. Yet, in 2020, 800,000 children living with HIV were not on treatment. The development and uptake of optimal, child-friendly HIV treatment lags far behind such work in adults, resulting in poorer health outcomes and preventable deaths for the youngest patients. Rapid transition to better pediatric formulations — in combination with improved HIV diagnosis for children — is desperately needed to reduce the estimated 120,000preventable pediatric AIDS-related deaths.  

Forty years into the AIDS pandemic, we‘ve seen significant progress. Mothers and children have access to HIV prevention and treatment services that were unimaginable when Elizabeth was diagnosed with HIV. Millions of lives improved and saved are clear reminders that the global movement to end AIDS can and must continue to evolve, innovate, leverage, and grow in order to meet any obstacle that keeps us from realizing the end of the epidemic.

The global community must rally to create an AIDS-free generation while also seeking to end the widening health care gaps made glaringly apparent by the COVID-19 pandemic. Let’s not shrink away from this challenge but rise to meet it together. The lives of our children and future generations depend upon it.