SPRINGFIELD, Ill. (WAND) — While many people may contract COVID-19, RSV or the flu over the next few months, Illinois lawmakers are trying to figure out the best ways to address long COVID. Roughly 10-15% of Americans who contract COVID-19 have long term effects.

Over 4 million people in Illinois contracted COVID-19 throughout the pandemic. Health care experts believe roughly 14% of those Illinoisans have experienced long COVID symptoms.

"We know in the United States, in general, of the 15% that ever experience long COVID amongst adults, about 18.6% are Latino or identify as Latino," said Dr. Melissa Simon from the Northwestern University Feinberg School of Medicine. "That's the largest proportion of those who identify with long COVID whereas non-Hispanic white is about 15% and non-Hispanic Black is about 12%."

Yet, experts told the Senate Public Health Committee Tuesday that Illinois does not have proper demographic data on long COVID patients. Many believe the state should provide funding for a study to analyze the impacts of long COVID on underserved communities.

"While my understanding of my long COVID has evolved and grown over time, my physicians have not helped me to find solutions to my many health challenges," said Marta Cerda, CEO of ASI Homecare in Chicago. "During my physician visits, they look at me with blank stares and with confusion when I tell them about the many health issues that are attacking the major organs of my body."

Illinois long COVID

Dr. Melissa Simon from the Northwestern University Feinberg School of Medicine spoke during a Senate Public Health hearing about long COVID on September 26, 2023.

Advocates stressed that Illinois can address this issue by expanding public awareness programs about COVID-19, improving access to treatment programs, and tracking data on the impact of long COVID. Others said that the state needs to implement better strategies to help long COVID patients in rural communities.

"Your constituents are being left behind," said Beth Finta from the Southern Illinois Center for Independent Living. "I ask that funding be considered to fund long haul COVID clinics, provide medical transport to these clinics, to continue to fund grants such as mine that are able to provide these critical referrals for access to health and social services."

The Illinois Department of Public Health said long COVID is grossly under-diagnosed or not reported to healthcare providers. Agency officials hope to solve that issue over the coming year.

"IDPH has discussed the need for more sophisticated diagnostic coding for long COVID that could capture the severity as well as the associated symptoms with our federal partners," explained Dr. Arti Barnes, the department's chief medical officer. "We have discussed with them the need for clinic-based claims data as well as social security disability claims related to long COVID."

Although, senators are concerned that IDPH no longer reports the daily COVID-19 cases and hospitalizations on the department's website. Barnes said they will continue to provide COVID-19 statistics on a monthly basis.

The Senate Public Health Committee said they are committed to continuing discussions with the Illinois Department of Public Health and community experts to find solutions for long COVID patients. 

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