Why decentering Long COVID in the 2024 election was a mistake for all Chicagoans
By Khalil Dennis
Aditi Aggarwal, center, attends a town hall meeting with Parallel Play at the Chicago Public Library West Loop branch on Nov. 16, 2024. (Joel Angel Juarez/for City Bureau)
Once a sponsored sailboat racer and geologist, Jamie Grisko, 35, faced early retirement after an acute COVID-19 infection. Grisko, of North Lawndale, was diagnosed in December 2020 during early clinical trials. As a patient with Long COVID, also known as a long hauler, her illness progressed to constant vomiting, nausea and debilitating fatigue, requiring 17 hours of sleep a day.
“If your cell phone battery is at 100%, and that's what ‘healthy’ feels like, it feels like having a cell phone battery at 5%,” Grisko told City Bureau in an interview while resting in bed. “I could shower, but I couldn't do anything else for the day. I could catch up on emails, but [afterwards] I'm going to be asleep for three days throwing up [with] a constant headache [that] feels like a concussion that never goes away.”
Amid the election season’s heated debates, stump speeches and political analysis, politicians and pundits repeatedly referenced one constant and deadly issue in the past tense: COVID-19, specifically Long COVID. COVID-19 was the 10th leading underlying cause of death in the United States in 2024, with hundreds or thousands dying each week, and its effects are persistently felt across racial and economic lines.
And experts and advocates say people aren’t taking it seriously enough.
In summer 2024, Chicago hosted the Democratic National Convention amid bustling street fairs, Lollapalooza, and waterfront events. With COVID-19 rates surging nationally and in Chicago during the summer , many DNC attendees later tested positive.
Around 18 percent of all U.S. adults have had Long COVID, broadly defined as “a chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months,” according to the Centers for Disease Control and Infection.
A 2023 survey from the Chicago Department of Public Health showed at least 10.8 percent of Chicagoans were living with Long COVID. Low-income, Black, Latine, transgender and disabled people experienced Long COVID at higher rates after testing positive for the virus, according to the study.
It’s possible those numbers could be even higher; the data in the study was self-reported, there was another surge in summer 2024.
Long haulers and researchers told City Bureau the compounding health complications have made it difficult — if not impossible — to work. Recent research has shown millions of Americans haven't been able to return to work within three months of a COVID infection, and it's having a big effect on local and global economies.
And the question remains: In the face of a mass disabling event, why are officials minimizing this threat? With mounting misinformation about Long COVID and its devastating impact on health and employment, Chicago organizers and disability advocates are urging residents to demand that public officials reinstate citywide COVID mandates, such as mandatory masking and testing. COVID-19 mitigation was largely a non-issue during election season, a discouraging reality for long haulers who are pleading for broader precautions.
Now, under President Donald Trump’s second administration, health data and resources about Long COVID and other conditions have been targeted, paused, archived or removed from federal websites.
“Politicians don't frame this conversation as ‘we are all at risk of developing Long COVID.’ [It’s affecting] the people they don't want to think about [and] negates that that corner is growing, said Jess Maciuch, a Northwestern University graduate student and researcher doing bioinformatics analysis for Long COVID. “It's like seeing a complete disconnect from reality.”
Jess Maciuch, a Ph.D. student at Northwestern University’s Driskill Graduate Program, poses for a portrait at her home in Chicago on Friday, November, 15, 2024. (Joel Angel Juarez/for City Bureau)
Susceptibility, COVID Transmission & Long COVID
In early 2024, the CDC and World Health Organization designated COVID-19 an airborne virus. Aerosols can linger for hours in the air, particularly in poorly ventilated buildings and crowded outdoor spaces.
Long COVID can damage every organ system leading to weakening immune function, and recently vaccinated carriers can still face organ damage even if they feel perfectly healthy, said Lavanya Visvabharathy, a University of Chicago infectious disease immunologist and Long COVID researcher.
As of 2022, more than 200 health symptoms were associated with Long COVID, according to the American Medical Association. Symptoms range from irregular heartbeat, skin rash and brain fog to more life-altering conditions such as chronic fatigue syndrome (ME/CFS) and diabetes and neurological diseases. Even worse, these conditions often occur in tandem, according to researchers and long haulers. It also spreads more easily than the flu, according to the CDC.
Immunocompromised and elderly people, including those with comorbidities, are more vulnerable to getting severe COVID-19, but everyone is equally at risk of contracting the acute infection “across the board,”Visvabharathy said.
“There's nobody who's at an increased susceptibility for COVID infection – everybody's getting COVID. Vaccination protects [you] from severe disease, but vaccination does not prevent you from getting infected,” Visvabharathy said.
Research in 2023 showed booster shots were less effective against the Omicron variant compared to the Delta variant.
“An effective vaccine needs to prevent infection. This vaccine is only 32% effective at four months preventing infection. In those terms, it's not that effective,” Visvabharathy said.
As of August 2024, the most recent data available, 16.6 percent of Chicagoans are up to date on COVID-19 vaccinations, according to the Chicago Department of Public Health vaccine coverage dashboard. Visvabharathy maintains that everyone must get their updated vaccines to prevent severe disease. But it’s critical the country funds development for vaccines that prevent COVID-19 transmission altogether, not just prevent severe disease, she said.
Jess Maciuch, a Ph.D. student at Northwestern University’s Driskill Graduate Program, poses for a portrait at her home in Chicago on Friday, November, 15, 2024. (Joel Angel Juarez/for City Bureau)
Maciuch, who lives with Myalgic encephalomyelitis/chronic fatigue syndrome, one of the hallmarks of Long COVID, said her condition would be catastrophic for someone with fewer resources. An estimated 1-2.5 million Americans live with the disease, rendering 75% of those affected unable to work and 25% homebound or bedridden, according to MEAction, an advocacy group that battles for greater recognition of the disease.
“There is a relationship between Long COVID and being able to rest after getting [an] infection. If you're working minimum wage jobs [and] push yourself to overexertion, [this may] push you towards developing chronic illnesses,” Maciuch said. “If you're talking about communities that already have issues accessing health care [and struggle with] financial [and] housing instability, adding Long COVID is adding fuel to the fire.”
With individuals presenting Long COVID differently, the onus is placed on primary care doctors, many of whom cannot identify, diagnose, or believe the existence of Long COVID, Visvabharathy said.
Grisko and her wife, a paramedic firefighter, contracted COVID-19 during the pandemic. Disability benefits weren’t a reliable option for Grisko and her wife, primarily because their income is just under the limit. So if they made more money in a given month, they wouldn’t qualify, Grisko said.
City rental assistance and other safety net programs were too slow or insufficient to prevent the couple from experiencing housing insecurity, Grisko said. The couple crowdfunded for consistent housing and debt repayment, but it hasn’t been enough, Grisko said.
With Grisko bedridden and her wife acting as both breadwinner and caretaker, hope feels slim.
“If something were to happen to her, I would seriously be considering medically assisted suicide,” Grisko said. “I know fixing COVID is expensive, but it feels more expensive not to fix it.”
Anna De Ocampo Kain speaks during a town hall meeting with Parallel Play at the Chicago Public Library West Loop branch in Chicago on Saturday, November, 16, 2024. (Joel Angel Juarez/for City Bureau)
‘We Can't Afford to Put Our Seatbelt on Halfway’
Raising awareness of Long COVID’s threat on working-class Chicagoans is a vital first step to creating an environment for political pressure, activists say.
Since the start of the pandemic, Chicago organizers have distributed free resources to help people stay healthy as well as raise awareness about how broad prevention protects all communities.
Reaux X, a co-organizer of Collective Air, said the solution is simple: masking and air filtration. Advocates want community members to push the city leaders to reinstate mandatory masking in essential hubs where immunocompromised people need to go, including hospitals, schools and workplaces.
Having spent time teaching in schools, Reaux is no stranger to seeing students and teachers falling ill en masse. She urges parents to advocate for masking and better air filtration at school board meetings and pressure newly elected board members, stressing that this is not an isolated battle.
“My student came to school sick as a dog. I knew immediately he had COVID. We came to school the next day [and] my students [were] dropping like flies. Head hurts, throat hurts, coughing sounds horrible.”
“Everything almost came to a halt because people were dying. Their jobs had such bad labor practices. It's a breeding ground for [teachers] to get sick.”
Collective Air provides high-quality masks via mask dispensers on CTA platforms and buses. Their goal is to provide dispensers for all public transit riders in the next five years, with specific attention to the South and West Sides. Free and accessible masks are essential since “masks are $20 [if bought on your own and] you get maybe a pack of three if you're lucky,” Reaux said.
Even DIY air purifiers such as the Corsi-Rosenthal Box air cleaner, when paired with other layers of protection like masking, testing, and staying home when sick, have been shown to reduce airborne viruses in indoor environments.
”I don't care how big of an air purifier you get. The best practice is masking and air filtration. Simple,” she said.
Chicago Mask Bloc delivers free masks and rapid tests to Chicagoans with help from fundraisers and volunteer delivery drivers. In October alone, they covered the cost of 540 at-home rapid tests and 2,200 3M Aura respirator masks. Clean Air Club provides high quality air purifiers for venues hosting touring artists and musicians.
Other groups such as Care Not COVID Chicagoland also are advocating to reinstate mandatory, universal masking for health care workers in medical institutions, saying unmasked personnel harms patients.
There aren’t enough federal protections for sick and disabled workers, such as ample rest at their jobs for long haulers, organizers said. Policies such as the isolation periods the CDC implemented at the behest of Delta Airlines are not enough, Grisko said.
“[Policy] needs to come from J.B. [Pritzker’s] office or the federal level, because they're going to keep working employees that are sick,” Grisko said.
Klyn Kennedy, left, and G. Matthews, right, attend a town hall meeting with Parallel Play at the Chicago Public Library West Loop branch in Chicago on Saturday, November, 16, 2024. (Joel Angel Juarez/for City Bureau)
This sense of urgency is critical “as we dive deeper into COVID-denialism, fascism [and] eugenics,” Reaux said.
An executive order to cut references to “gender ideology” on federal websites has led to removals of key health information and data. That included the Household Pulse Survey which tracked Long COVID according to gender and sexual orientation, The Sick Times reported. The page has since been archived with a note saying the data is no longer being updated. Web pages on accommodations for long haulers also were scrubbed, and another executive order directed the Department of Health and Human Services – now led by prominent vaccine denier Robert F. Kennedy Jr. – to terminate an advisory committee on Long COVID, according to The Sick Times.
“I know everyone's tired of hearing about COVID. It's scary and we do not have it under control, but it's possible to turn things around,” Grisko said. “If everyone started doing 50% more protective measures, wearing a mask when you're around [crowds], getting the vaccine – even though it does not prevent long COVID, it does prevent you from dying on a ventilator.”
Ultimately, COVID-19 is a matter of collective responsibility, Reaux said.
“Day after day, infection after infection, death after death — COVID is getting smarter, harder and larger,” she said. “We can't afford to put our seatbelt on halfway. We need full protection.”
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