These days, Dr. Jessica Lilley isn’t surprised by much. When weeks bring her a sudden influx of new pediatric-diabetes diagnoses, numbers that would have been a rarity before the pandemic, she chalks it up to the new normal, a pace that she has come to expect in the COVID era.

When the pediatric endocrinologist at the Mississippi Center for Advanced Medicine heard the Centers for Disease Control was warning of a possible link between COVID-19 and pediatric diabetes earlier this month, Lilley had to hope that the broader medical community was finally catching up.

The CDC study represents just one more piece of evidence for a link Lilley has sounded the alarm over for months, which the Crirec reported in September 2021. “All of us in the pediatric endocrine community have been concerned about the rise in pediatric diabetes over the pandemic,” Lilley said in a January 2022 interview after the study’s publication.

The CDC study states in no uncertain terms that COVID-19 may severely increase the risk of diabetes in children, even after mild or asymptomatic cases otherwise dismissed as inconsequential. This study is the first major investigation of a trend that many pediatric endocrinologists and other experts in the field of childhood diabetes have long feared, following a stunning rise in new pediatric diabetes diagnoses over the course of pandemic.

The CDC study examined health-care claims across two data sources—IQVIA and HealthVerity. Data from March 2020 to February 2021 revealed a significant increase in diabetes diagnoses for children under the age of 18 who had been diagnosed with COVID-19 compared to those who had not been diagnosed.

“New diabetes diagnoses were 166% (IQVIA) and 31% (HealthVerity) more likely to occur among patients with COVID-19 than among those without COVID-19 during the pandemic and 116% more likely to occur among those with COVID-19 than among those with (acute respiratory infections) during the pre-pandemic period,” the CDC stated.

In late 2021, Lilley warned the Crirec of the meteoric increase in new pediatric diabetes diagnoses at her practice, growing by “roughly 30% to 40%, compared to 2019.”

Lilley worried that the spike in diagnoses was a result of COVID-19 spreading unabated through Mississippi’s children, a process the most infectious variants of the pandemic have only accelerated.

‘The Lies We Believe’

But that concern—founded in practical analysis of growing diabetes trends often failed to penetrate the popular, convenient fiction that COVID-19 only harms adults. “One of the biggest lies that we believe is that COVID is only mild or inconsequential in children,” Lilley added.

It is not. COVID’s lethality does increase with age, but its ability to generate serious illness, organ damage and even death in children is well documented. The CDC’s study is not a smoking gun that firmly establishes an explanation for what pediatric diabetes experts have seen in 2020 and 2021, but it is solid evidence that the link should be strongly investigated, Lilley said.

Four women stand together in front of red stairs
A Centers for Disease Control study is warning of a possible link between COVID-19 and new pediatric diagnoses of diabetes, just as Dr. Jessica Lilley, pediatric endocrinologist at the Mississippi Center for Advanced Medicine, previously warned the Crirec in September 2021. From left: Emily Mann RN; Anna Baldwin PharmD CDE; Dr. Jessica Lilley; Valerie West RN CDE. Photo courtesy Jessica Lilley

Elements of the CDC’s study are clearly intended to challenge popular dismissals of the visible trend in new pediatric-diabetes diagnoses. “I’ve had a lot of resistance from people who say, well, of course, we’ve seen an increase in diabetes because all these children are sitting at home, not going outside. Their diet has changed, and they’re gaining weight.”

But the study compares outcomes in children with or without COVID diagnoses over the same time period—with both groups experiencing the same pandemic conditions.

“I think what we are seeing is new, insulin-dependent diabetes in the aftermath of SARS-COV-2,” Lilley said. “I think that we’ll see that it’s not just the environment, it’s not just the change in activity. It’s not just about diet, (but that) there’s something specific about the way this virus interacts with the pancreas.”

Additionally, the study compares diabetes diagnoses in COVID-19-positive children to diagnoses in pre-pandemic children who experienced other forms of acute respiratory infections, like colds, influenza and sinusitis. The 116% comparative increase is one more data point suggesting that COVID-19 may have a more direct relationship to diabetes diagnoses than any given generic viral infection.

Previously, research from the National Institutes of Health depicted bizarre and dangerous “reprogramming” effects on some of the body’s organ systems after some COVID-19 infections. “Changes in gene activity within pancreatic cells following SARS-CoV-2 infection showed … (production of) less insulin and more glucagon, a hormone that encourages glycogen in the liver to be broken down into glucose,” then-NIH Director Dr. Francis Collins wrote.

“We’ve seen that in the adult setting,” Lilley added. “With severe infection, you’re seeing the body handle insulin a lot differently: the way the body releases insulin, the way the body processes insulin.”

‘I Still Hope I’m Wrong’

In the months following Lilley’s dire warning about COVID and pediatric diabetes, the delta wave receded, leaving a record number of diagnoses in its wake. As 2022 unfolds, it is omicron that sweeps across the nation, spreading many more cases than any previous variant. Lilley fears the trends of the pandemic, and especially the highly infectious delta, will replicate in the weeks and months to come.

Lilley cannot say for certain whether the growing evidence of a link between COVID-19 and pediatric diabetes proves the virus is directly causing diabetes in children who would have otherwise never acquired it, or if the mass spread of the disease is simply triggering several years worth of eventual diagnoses early. Only time and intensive study can reveal that. But Lilley doesn’t find gambling on that outcome worth it.

“When you have a bunch of advocates for children,” Dr. Jessica Lilley said, “especially female advocates for children, people are more likely to listen to someone on Twitter telling them what they want to hear.” To Lilley’s right stands late patient Contrel Bean, a reminder to her of the seriousness of the lifetime struggles of diabetes. Photo courtesy Jessica Lilley

Lilley anticipated that so many would ignore the clear signs of a potential connection between COVID infection and serious long-term endocrine damage. It is a casual dismissal that she has learned to expect.

Pediatric endocrinology is a disproportionately female profession. Lilley told the Crirec that this designation leads others, even some health-care workers, to take the field’s conclusions and warnings less seriously. “When you have a bunch of advocates for children,” Lilley said, “especially female advocates for children, people are more likely to listen to someone on Twitter telling them what they want to hear.”

“Sometimes,” Lilley said, “when I’m talking to my male colleagues, I feel like I’m the teacher from Charlie Brown.”

Vaccination: A Powerful Protection

Lilley stressed that parents have a powerful option to protect their children from whatever long-term damage COVID may be capable of: vaccination. “What we’re seeing is that vaccination is preventing other long-term effects of COVID, like MIS-C. That’s been proven. So it stands to reason that preventing COVID infection, period, and preventing severe COVID as well, is going to curb the long-term effects.”

As a mother, Lilley understands the hesitancy some parents have over vaccinating their children. With three young kids of her own, she had to make that decision for her own family. To Lilley, the risk of unvaccinated infection and the unknowns of long-term viral damage made the decision clear.

“We’ve had a lot of robust data and a lot of really rigorous clinical trials looking at this,” she said. “And you know, just looking at the very elegant and clean immune response that you get from a single protein rather than an entire killed or attenuated virus like we do in some other vaccines—it’s a very good option.”

With rock-bottom vaccination rates for children in Mississippi, Lilley worries she will see the downstream effects in her office, in the form of more diagnoses. “We do all kinds of things as parents to prevent harm to our children,” she said. “We make sure they wear bike helmets. We make sure they’re in the best car seat. We send them the healthiest lunches we can. (Vaccination) is another way of doing the best we can for our children.”

And yet omicron’s unparalleled infectivity has convinced some that protective measures are no longer possible, a state of surrender that Lilley worries will exacerbate the diagnoses she expects to see as 2022 unfolds.

“Our policy decisions reflect that we don’t really care about kids. Because nobody wants to hear this,” she said with a sigh. She is too frustrated for vindication. “I want it to be incidental. I hope that five years down the line that we look and say, ‘Oh, well, there’s this compression effect where we found everybody who would have been diagnosed anyway,’ and then we have far fewer diagnoses next year, you know?”

“I really still hope to be wrong,” Lilley finished.

Nick Judin began his career in journalism at the Jackson Free Press in 2019, coming on as State Reporter to cover the 2020 legislative session. That posting quickly gave way to a year leading the JFP’s COVID-19 coverage. Nick’s reports from the frontline of coronavirus have repeatedly made national headlines, as he has asked hard questions of state leadership and done critical interviews with the state’s top public-health experts. Email the Jackson, Miss., native at [email protected] and follow him on Twitter at @nickjudin.