Health leaders said Tuesday that continued investments in public health and awareness campaigns are necessary to get ahead of the anticipated rise in long COVID cases in Illinois. [Health News Illinois]

Jerry Krishnan, associate vice chancellor for population health at the University of Illinois Chicago, said those in the clinical field are becoming more aware of the condition, but public awareness of the impact of long COVID remains low.

Initial research has shown that the economic toll of long COVID is over $1 trillion, Krishnan said. And that number is expected to keep increasing as individuals face symptoms like “brain fog” and persistent restlessness.

“We need to be thinking now about how to mitigate the health and economic burden of long COVID,” he told the Senate’s Public Health Committee during a hearing in Chicago. "It is definitely there, and just because it's not being tracked by the state doesn't mean it's gone.”

One of the main challenges, Krishnan said, is the lack of up-to-date data on COVID-19 trends in Illinois. 

He noted the Department of Public Health has stopped some of its COVID-19 reporting since the end of the public health emergency in May, which makes it more difficult to track trends and whether stakeholders are making any progress with their outreach efforts.

Dr. Melissa Simon, director of the Center for Health Equity Transformation in the Feinberg School of Medicine at Northwestern University, said raising public awareness is also a major step to addressing long COVID. As a practicing OB-GYN, she said she still regularly talks with patients who have no idea of the effects of long COVID, especially on vulnerable populations.

She said stakeholders need to prioritize historically underserved individuals, specifically Black and brown residents. While roughly 15 percent of adults who caught COVID-19 in Illinois experience long COVID, Simon said the challenge is knowing what racial and ethnic groups bear that disproportionate burden of long COVID.

Both Simon and Krishnan said an important step to addressing that issue is to better fund the public health infrastructure.

“I think that all of that data combined are very compelling to to underscore why this is such a critical issue to not ignore,” Simon said. “Even though COVID is a topic that people want to run away from, especially in the political arena, Dr. Krishnan and I fully agree that COVID is not gone, it's here to stay, and it could get worse again.”

Arti Barnes, chief medical officer for the Department of Public Health, told lawmakers they are talking with federal partners about the need for better diagnostic coding for long COVID that will “capture severity as well as the associated symptoms.” 

Additionally, she said they have discussed the need for clinic-based claims data and social security disability claims related to long COVID to help the department better understand the impact of the disease in local communities.

While those discussions are ongoing, Barnes said the department is working with providers to better identify long COVID conditions so they can best serve patients.

They are also continuing the public push for COVID-19 vaccinations, saying that being vaccinated remains one of the best ways individuals can protect themselves from long COVID, she said.

Sen. Robert Peters, D-Chicago, said long COVID-19 is an issue that lawmakers will need to take a closer look at when they return next spring, 

 “We really have to mainstream this, and we got to make sure that the data that was discussed earlier is better tracked, particularly for people that have those intersectional identities,” he said. “We (also) need to make sure that we are pushing up federal lawmakers on this issue.”

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