At the 2024 RECOVER–Treating Long COVID (TLC) Workshop, one message came through loud and clear: children cannot keep waiting for clinical trials. Families already carry the weight of delay in their daily lives. They should not have to wait for science too.
A familiar pattern keeps repeating. Trials begin with adults. Children are added years later, if at all. The assumption is that results in adults will trickle down. But hand-me-down research does not fit growing children. It leaves families with nothing while illness steals years that can never be returned (Yonker et al., 2025).
Childhood Cannot be Reclaimed
A twelve-year-old who misses all of middle school because of Long COVID will never get those years back. The friendships, the school days, the milestones—once gone, they are gone forever.
Nearly six million children in the United States may now be living with Long COVID, making it the most common chronic illness of childhood. Every delay in clinical trials costs children more of what they cannot afford to lose: time.
Families Need Answers Now
Families do not need promises of future answers. They need safe and effective treatments identified now. They need trusted clinical trials that reflect children’s experiences from the very beginning. They need researchers and clinicians to use what already exists, including pediatric patient-reported outcomes and long-standing methods to adapt dosing safely for younger patients (Yonker et al., 2025).
The path is clear:
Bring safe and effective treatments to children quickly, so no child spends years waiting.
Move pediatric trials forward now, building on RECOVER so children are never left behind.
Design studies that reflect what families live every day, so findings lead to real care.
Share findings quickly so treatments reach children, not just research journals.
Fighting for Care that Cannot Wait
When Long Covid Families joins the Second Annual RECOVER–TLC Workshop this year, we will carry family voices into every conversation. Our goals are simple but urgent:
Push for trial designs that include children from the start.
Ensure pediatric data is not an afterthought but a driver of clinical priorities.
Work to create pathways where recognition leads to diagnosis and diagnosis leads to care—without years lost in between.
We know what happens when children are excluded: years without answers, without treatments, and without hope of improvement. We also know what happens when they are included: research moves faster, and care becomes possible
The Work Ahead for Children
The next chapter of pediatric Long COVID research will depend on collaboration among researchers, clinicians, advocates, and the families living this crisis. The message is clear: children cannot be left waiting at the back of the line. They must be placed at the center of clinical trials, guiding the search for answers and shaping every step forward.
Because every day lost is a day of childhood that cannot be returned.
Reference
Yonker LM, Kane B, Pretorius E, et al. Equity in research: a global consensus statement on the urgency of including children in long COVID clinical trials. 2025.
