‘Disabling’ Chronic Illness in Children Not Taken Seriously: Experts

A new study by Rutgers University has highlighted that a significant number of young children are experiencing ongoing symptoms after COVID-19 infection, signifying that greater research needs to be poured into evaluating the risk and treatment of long COVID in children.

The study, released on July 23, coincides with Pediatric Long COVID Awareness Week, running from July 21 to 25, run by the advocacy group Long Covid Families.

Over the course of the week, the group has been bringing together families, clinicians, researchers, and advocates to raise more awareness on the wide-reaching impact of long COVID in children.

“This is a public health crisis for children. And it demands action,” Long Covid Families said in its promotion of the condition’s awareness week.

“Because people operate under the false assumption that if you are young and healthy, like kids, COVID is an inconsequential nothingburger and we should not worry about it,” Dr Ziyad Al-Aly, a professor of medicine at Washington University in St. Louis, told Newsweek.

“Of course, this is not accurate at all,” he added. Long COVID in children “always demanded more attention and seriousness.”

What The Study Found

The study assessed 1,011 children, of whom 472 were aged 2 or younger, and 539 were aged between 3 and 15.

It was found that 101, or 15 percent, of the 677 children who had previously tested positive for SARS-CoV-2 infection were identified as likely having long COVID.

Long COVID is recognized as symptoms and health complications following COVID infection that persist for several weeks or months after the initial infection. It can result in a wide range of symptoms, affecting multiple systems in the body.

Co-author of the study, Lawrence Kleinman, who is also chair of the Department of Pediatrics at Rutgers University, told Newsweek that he was not “surprised by these findings and would not be surprised to learn in the future that they understate the prevalence of long COVID.”

Previous studies estimated the prevalence of long COVID in children to be between 10 and 20 percent—suggesting it has become one of the most common chronic illnesses in children. Asthma, often described as the most common chronic illness in children, affects 16 percent.

“Our methods were designed to be conservative, that is to maximize the likelihood that we distinguished long COVID from other causes,” Kleinman said. “That means that our estimates are likely to be lower than the actual rate of long COVID.”

“At the beginning of the pandemic, no one knew that long COVID existed,” he added. The first reports from China included” inaccurate reports” that children were spared COVID, he said, adding that the reports “grew into a myth which in turn created a mindset that COVID in kids didn’t matter.”

As a result, there “was a misconception that children could not get COVID – but we know that’s not true,” Melissa Stockwell, another author of the study and chief of the Division of Child and Adolescent Health at Columbia University, told Newsweek.

“We are still very behind in raising awareness about long COVID in children,” she added.

Another reason why long COVID was not taken seriously in children is that “the symptoms associated with long COVID in children were not properly defined,” Dr. Akiko Iwasaki, director of the Center for Infection and Immunity at the Yale School of Medicine, told Newsweek.

She added that the study underscored “the need for the society to take long COVID in children seriously.”

However, Dr. Gerald Teague, a professor of pediatrics at the University of Virginia School of Medicine, told Newsweek that the study’s investigators “did not confirm COVID infection with diagnostic tests nor did they measure antibodies to COVID in the participants,” which would have provided a more accurate screening of the condition.

He also noted that children not flagged as having COVID in the study may have had “asymptomatic infection.”

Although, despite some concerns, he said, with the study, that it was a “proof of concept that long COVID may be a bigger problem than we thought.”

The Impact Of Long COVID On Children

“There is great concern for the younger generation, both about the long-term impacts of the pandemic itself, but also for those with Long Covid,” Stockwell said.

Long COVID in children can manifest in a number of different symptoms, ranging from “annoying to disabling,” Kleinman said.

The chronic illness can cause “pain, distress, or disability” in children, directly impacting the child’s interaction with their family and friends, and may “hurt school performance, athletic performance, or even the capacity of children to conduct normally routine activities,” he added.

These factors are of great concern, Al-Aly said, as “we worry about kids’ educational attainment, forming friendships, sports, and others, and all of these facets of normal development could be impaired in long COVID.”

“This may negatively affect kids in their most formative years—leaving them scarred for a lifetime,” he added.

Long COVID can leave some children bedbound for years, Iwasaki said. “If you have ever spoken to a parent of a child with long COVID, you quickly learn how devastating it can be to the lives of the children and their family,” she added.

What Experts Think Should Be Done

One key part of tackling the issue is down to “improving vaccine uptake,” Al-Aly said.

However, the Trump administration has recently removed COVID vaccines from the Centers for Disease Control and Prevention (CDC) recommendation for healthy children and pregnant women, as part of Health Secretary Robert F. Kennedy Jr’s “Make America Healthy Again” (MAHA) campaign.

Kennedy Jr, a well-known vaccine sceptic, said, when announcing the update on X: “It’s common sense and it’s good science.”

Another important step is increasing understanding, Stockwell said. “We really need pediatricians to understand what long COVID looks like in children and understand that symptoms are actually different in different-aged children as well,” she added.

Treatments are the next vital step, Kleinman said. “We need to develop and identify effective treatments for long COVID in a rapidly iterative and long-term approach to quickly identify promising treatments and to evaluate their effectiveness and safety in practice.”

That treatment, though, needs to “get at the root causes of the disease,” Iwasaki said. She added that long COVID is a disease “driven by the virus and the host responses to the virus involving the immune, neurological, cardiovascular, gastrointestinal and pulmonary systems.”

From a policy perspective, “flexible attendance at school, proper training of teachers and pediatricians, insurance coverage and more funding for research” would all help tackle the issue, Iwasaki added.

More broadly, supporting children with long COVID and preventing further cases will require “investment in health and health care services, physical and occupational rehabilitation, and mental health services,” Kleinman added, saying this “will be critical for the population health of our children for the foreseeable future.”