As the global HIV/AIDS community came together virtually for the 23rd International AIDS Conference (AIDS 2020), it provided a prime opportunity to bring the tools we’ve developed over the past three decades to address our newest challenge: COVID-19.
Throughout AIDS 2020, there was intensive discussion around how we can leverage the HIV/AIDS response to battle the new coronavirus. Yet during that same conference, the Joint United Nations Programme on HIV/AIDS (UNAIDS) released an update that shows just how significantly children and young people have been left behind in the global AIDS response.
The figures for children are discouraging. Last year, 150,000 children became newly HIV positive, dramatically missing the 2020 target of 20,000 new cases. Only 53% of the 1.8 million children living with HIV have access to medications they need to stay healthy — much lower than the 67% of adults on treatment. Without treatment, half of HIV-positive children will die before their second birthdays. And while the numbers of AIDS-related deaths worldwide have declined over the past decade, that number has dramatically increased for adolescents.
We often talk about bringing the successes of the HIV/AIDS response to the COVID-19 response — but we must also ensure that we don’t repeat our failures. This time, it is essential that we seek to fully understand the unique impact this pandemic may have on children and how to treat them, before it’s too late.
It’s clear that children were not a priority in the national response to AIDS in the late 1980s and early ’90s. Misconceptions that certain populations weren’t heavily impacted wrongly led to children going without, including age appropriate medicines. Children were lost to AIDS but no one considered children part of the AIDS crisis. The late mother and activist Elizabeth Glaser saw the lack of resources for HIV-positive children when her daughter, Ariel, and son, Jake, were diagnosed with the virus in 1985. Ariel died at 7 years old in 1988, after a long and painful bout with AIDS-related illness.
Glaser feared Jake would soon meet the same fate and began aggressively advocating for new medications and legislation to help children, and raising millions for pediatric HIV/AIDS research. She and her friends Susie Zeegen and Susan Delaurentis organized trailblazing think tanks — bringing together the best minds in immunology to solve the HIV puzzle, funded cutting-edge research, and collaborated with the National Institutes of Health (NIH) and other leading institutions. This laid the groundwork for better pediatric HIV treatments and helped establish protocols to prevent mother-to-child HIV transmission — eventually leading to the virtual elimination of such transmission in the United States.
While the policy changes driven by Glaser’s work were ultimately profound, they were far too slow. Congress eventually passed The Best Pharmaceuticals for Children Act (BPCA) in 1996 encouraging the pharmaceutical industry to complete pediatric studies by providing an additional six months of drug exclusivity. The Pediatric Research Equity Act, passed in 2003, requires that drug companies study appropriate formulations of their products for children. Thousands of children contracted HIV and hundreds died before we reached acceptance of a simple truth: children are not small adults. Diseases — and drugs — effect children uniquely. Therapies must be studied specifically for use in children, who require specialized dosing, indications of use, safety information, and data on efficacy.
While studies show that children have been mildly affected by COVID-19 generally, the emergence of the severe Pediatric Multisystem Inflammatory Syndrome (PMIS) across Europe and the United States demonstrates the need for ongoing vigilance across all age groups. As with HIV in the 1980s, immediate investment in research is paramount to understand causes, risk factors, and identify treatment interventions. The full spectrum of PMIS is not yet clear, whether the current geographical distribution reflects a true pattern, or if the condition is not being recognized elsewhere.
I’m heartened that AIDS 2020 included a specific focus on COVID-19. Though, I must also wonder: Have we truly learned from our failures to address HIV in children? And if so, will we apply those lessons to do better for children amidst COVID-19?
Elizabeth Glaser famously stated “actions are what save lives.” With so much at stake, we cannot afford to repeat the early history of pediatric AIDS with COVID-19 — or children will be left behind yet again. We need U.S. leadership and urgent action by the NIH and the Food and Drug Administration (FDA), as well as the World Health Organization (WHO) and others, to prioritize pregnant women and pediatric populations in key COVID-19 research, clinical studies and eventual vaccination strategies. Only with adequate data and timely information can we address the specific needs of these populations.
We cannot predict what will come next, nor how this newest pandemic will play out across the globe. What we must do — in the middle of so much uncertainty — is rise to the new challenges COVID-19 presents while continuing our unwavering fight for an AIDS-free generation.
Charles “Chip” Lyons is president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), which fights HIV in children. Click here for the more information and resources on COVID-19 from EGPAF.