During her teenage son’s last baseball game of the season in October, Denali Dasgupta’s family found out a teammate’s parent had tested positive for COVID-19.
Dasgupta’s family has private insurance and a pediatrician who can treat patients at prominent Lurie Children’s Hospital in the downtown Streeterville neighborhood.
“We thought, OK, this is not going to be hard” to find a test, said Dasgupta, 37, who lives in Chicago’s Mayfair neighborhood on the North Side.
They got some phone numbers to call. Then a physician assistant in the pediatrician’s office gave Dasgupta a warning — even though her son was possibly exposed to the virus, testing centers would try to turn him away because he had no COVID-19 symptoms.
“So let’s talk about what you’re going to tell them,” Dasgupta recalled the physician assistant saying.
“‘You’re going to tell them that he has asthma,’ which is true,” Dasgupta said. “‘And then you’re going to emphasize that your husband is still going out to work, your younger son is still going to group school, and that you’re pregnant. And just don’t let them turn you away.’ … She really coached me on it.”
This is what it’s like for many people in Illinois who are trying to get a COVID-19 test in the midst of an unrelenting surge of the virus. Navigating the already confusing world of health care to find a test can be an exhausting, frustrating ride.
Yet medical experts say getting tested is a crucial part of stemming the spread of COVID-19. Getting a timely positive test means infected people can more quickly quarantine.
Then the so-called positivity rate comes down, and more of the economy opens back up. More people could go back to work, and more schools could get kids back in the classroom.
“Everything hinges on that test, right?” said Dr. Larry Kociolek, who leads the COVID-19 response team at Lurie Children’s. “If we want parents to keep their kids out of school even with mild symptoms, miss a day of work, keep their siblings home. … and then let any contact know of those people and get them out of school, you need to be able to get tested quickly. If that initial step – if that’s the bottleneck – everything else gets held up.”
But even as Illinois is shattering records for the number of people getting tested for the virus, it’s still not enough to control one of the worst outbreaks in the nation. And a WBEZ analysis shows that, like much of the spread of COVID-19, that need for more testing disproportionately affects Black and Latino communities the most.
Access to a COVID-19 test isn’t equal
In Chicago, the Southwest Side is inundated with COVID-19. At Esperanza Health Centers, a group of clinics that treat mainly low-income people of color, the demand for testing has doubled in the last few weeks. So has the positivity rate. In two Southwest Side zip codes, 60629 and 60632, the positivity rate is more than 20% since Oct. 12 — more than double the citywide figure.
That’s about a week before Chicago Mayor Lori Lightfoot announced the city was in the throes of a second COVID-19 surge.
“People are really sick,” said Esperanza CEO Dan Fulwiler. “We’re fairly regularly now sending people straight to the ER.”
The latest surge crept up so fast that Esperanza is having a hard time keeping up with the testing demand. It’s a staffing issue, Fulwiler said.
COVID-19 testing facilities are located throughout Chicago, according to a map of nearly 100 such locations posted online by the city. However, a WBEZ analysis of testing data shows that Chicagoans are not getting tested at even rates.
Residents of majority-Black and majority-Latino ZIP codes in Chicago are getting tested at far lower rates than their counterparts in other areas of the city. For instance, since Oct. 12, the testing rates for majority-Black and majority-Latino ZIP codes hover around 1,650 tests for every 10,000 residents. But the rate is more than 2,200 tests for every 10,000 residents for the city’s majority-white ZIP codes during that span.
In fact, the 12 Chicago ZIP codes with the lowest rates of testing since Oct. 12 are all either majority Black or majority Latino.
And testing rates lag even in areas struggling with elevated positivity rates. In 60629 and 60632 on the Southwest Side, both majority-Latino ZIP codes with more than 20% positivity rates, the testing rate is less than 1,600 tests for every 10,000 residents since Oct. 12, according to the WBEZ analysis.
By medical provider, big teaching hospitals are doing most of the COVID-19 testing in Chicago, according to the city’s public health department. But publicly-funded community health centers like Esperanza are typically the go-to for low-income people and those who don’t have insurance.
While the Chicago Department of Public Health plans to add a testing facility at Midway Airport next week, as people swarm the city’s other free testing sites, it wants to boost access to the most vulnerable populations even more. So it’s working with community health centers to ramp up testing.
There’s a goal in mind: to knock down Chicago’s positivity rate to no more than 5%. That’s a standard the World Health Organization set in the spring that would indicate an outbreak is under control before reopening more of the economy.
It’s an ambitious goal. For that to happen, the amount of testing in Chicago needs to nearly triple from just a few weeks ago, to an estimated nearly 275,000 tests a week, a city public health spokeswoman said. The latest estimate was as of Nov. 11.
Community health centers are typically just making ends meet financially. Esperanza is billing both Medicaid and the federal government to help cover the cost of increasing testing.
Christina Anderson, chief of operations for the COVID-19 response at the Chicago public health department, said the city has distributed $14 million in grants to community health centers and hospital systems in part to expand testing.
Chicago public health officials are also working on another crucial piece: finding enough staff to help with testing. They’re exploring partnerships with nursing schools and other people in the pipeline to become health care workers.
“For a lot of these tests, you don’t need a license (to provide one),” Anderson said. “I have one sitting on my desk at home that I can administer myself.”
That’s another possible breakthrough, Anderson said, that could help bring down the amount of the virus flaring through Chicago and beyond and expand access to testing.
There are also ideas about health centers using vacant parking lots to test in and creating a registration system to direct patients to the closest testing sites.
As for the long lines at the city’s free testing centers, Anderson said: “They are free and they are also convenient. Part of what you get with that is people who shift away, folks like myself, if I think through do I want to go with my 2-year-old and stand in line at the urgent care for two hours, or do I want to go sit in my car at a city site for 30 minutes and get tested.”
The city is encouraging people who have private insurance to get tested at a non-public site, or get a home test.
“We do not want to be in a place where we are turning folks away from our city sites for any reason,” Anderson said.
Some parts of Illinois are testing deserts
While testing has improved since the pandemic began, it’s still a major barrier for large areas of the state beyond Chicago’s borders.
More than half of residents who live in the central and southwest part of the state are more than 10 miles from the closest testing facility, according to the draft of a study written by several researchers affiliated with the Illinois public health department, Northwestern University and the University of Chicago.
In some pockets, people are still 40 to 50 miles from a testing center.
Dr. Vidya Sundareshan, who practices in Springfield, says the availability of testing is particularly acute in rural areas.
“That’s where we have a lot of problems,” Sundareshan said.
If she sees a patient who lives in Effingham or Quincy and she thinks they need a COVID-19 test, she said she refers them to the state public health department’s online directory of public and private testing facilities.
But a glance at the list shows there’s one testing facility within a mile of Effingham and the next closest one is 27 miles away. In Quincy, the distance to a testing site is even starker: 2 miles away, then 52 miles.
Jaline Gerardin is one of the co-authors of the study. She’s an assistant professor at Northwestern University whose background includes modeling malaria in other countries around the world, and now COVID-19 for the state.
She points out that testing access reveals just as much disparity as all of the other trends in COVID-19. Across the state, Latinos have taken consistently fewer tests per capita across every age group than Black or white residents, according to the study.
During the pandemic, Latino and Black residents have died or been infected with the virus disproportionately compared to other racial groups.
But the spread of COVID-19 is so dire right now, Gerardin said, that even improvements to access wouldn’t stem the immediate tide of cases.
“Under our current conditions, I’m not sure any amount of testing is going to be enough,” Gerardin said. “I think we need to change the way people are contacting each other in order to move away from our steep increase.”
Representatives at the Illinois Department of Public Health did not respond to interview requests for Dr. Ngozi Ezike about how state leaders are coordinating testing, if they are.
Earlier this month, Ezike, who leads the department, encouraged everyone in Illinois to get tested regularly for COVID-19.
A patchwork of information and long lines
Beyond the lack of access for Black, Latino and rural communities, there’s a general confusion and lack of information for anyone who wants to seek out a test, something many experienced early on in the pandemic but that is just as acute in this surge.
For example, there is limited information in the state’s online directory of testing facilities about what kind of tests are available at each site, who qualifies for a test, and even the age of the person they will test. That can mean hours of phone calls or more online research to get those details.
The state acknowledges the list is not comprehensive and says some testing sites don’t want to be identified.
Consider a number of other headaches. At private testing centers, a slew of appointments could pop up online at midnight, only to vanish by breakfast. Some facilities are only open during work hours, and sometimes not every day. That’s a big barrier to low-wage workers who work a 9 to 5.
The lines at free testing sites run by the Chicago and Illinois public health departments are backing up for blocks, with people waiting sometimes hours for a test. These testing sites take anyone who needs a test, regardless of symptoms or insurance. The city sites, though, do not test kids younger than 1.
Last week, a DuPage County-run drive-thru site reached capacity less than two hours after opening at 7 a.m.
“We’ve used the city testing sites every time,” said Virginia Thomas, 36, a few days after she got tested again. She lives in Portage Park on Chicago’s Northwest Side, co-owns a bar called Beermiscuous and has private insurance. “I can’t even tell you how many times it’s been at this point. It gets harder every time we go. The slots are going so fast.”
Just because there’s a testing facility around the block from where you live doesn’t mean you can use it. Some require patients to have COVID-19 symptoms, along with a doctor’s order. Getting a test at a private facility depends on your age and the type of insurance you have.
Alexis Friedman, 38, who lives in north suburban Northbrook, illustrates the lengths people have gone to find a test. After her father died this summer, she wore a mask during his outdoor shiva, a Jewish mourning custom. But still, she worried that she expanded her typically tight bubble.
“I hate to say it, but I was worried about having to wait,” Friedman said. She knew she might not qualify because she didn’t have strong COVID-19 symptoms and heard that some people were waiting nearly two weeks for results.
“So I checked the box of potential exposure, even though nobody I knew personally had called and said, ‘Hey you know what, turns out I was positive,’” Friedman said.
She got a test, and her negative result came back within 48 hours.
And as the demand for testing intensifies, testing facilities are seeing supplies dwindle and struggling to have enough staff members to not just take nasal swabs and saliva samples, but also bill patients’ insurance if they have it.
Dr. Seth Trueger, an emergency physician at Northwestern Memorial Hospital in downtown Chicago, said he’s watched friends and family struggle to get tests at outpatient facilities.
“I know a couple people who tried to get rapid tests at an urgent care,” Trueger said. “They open at 7. You’ve got to get there at 6 for a line, and the line’s around the block and only the first 100 people can get it. People get turned away.”
In some cases, frustrated people who need a test and can’t find one show up at the emergency room, Trueger said. That’s typically one of the most expensive places to get medical care.
Testing challenges for children
As cases crop up at school, day care and or local sports teams, one of the hardest things to find is a test for a child.
Absent a comprehensive database that would show which facilities would test them — and do they need to have symptoms? — frustrated moms and dads are swapping tips in private Facebook groups to make the arduous process a bit less painful.
“It’s confusing even for me,” said Dr. Laura Zimmerman, a primary care physician at Rush University Medical Center on the Near West Side.
Parents can use the free state or local government testing sites. But the lines are long, perhaps too long for a screaming toddler.
CVS doesn’t test children younger than 10, while Walgreens doesn’t test kids younger than 3.
Lurie’s Kociolek understands the frustration. He lives in southwest suburban Frankfort, about two hours round-trip from the children’s hospital.
“I’ve wanted to get my kid tested when they’ve had symptoms,” he said. “My choice is to get into Lurie Children’s … or I can get it done in the suburbs. You go to the (state’s) testing site web page and you can’t filter sites that test children. So now you’re calling every urgent care and community-based center and you may find out no, they don’t test kids. Or they’re only open on Monday, Wednesday, Friday, or they run out of tests an hour into the work day.”
He has a hard time finding a test for himself near his home, and opts to get tested through work instead. He said Lurie wants to expand testing for kids who don’t have COVID-19 symptoms, but doesn’t have the resources to do so. Only some asymptomatic kids can be tested, such as those having surgery.
Dr. Jihad Shoshara is a pediatrician and president of Pediatric Health Associates, a large private practice in the west and southwest suburbs. They offer a rapid COVID-19 test for kids who have symptoms, where they could find out in about 15 minutes if they’re sick.
But Shoshara said children who have government-funded Medicaid health insurance because they’re low-income or disabled can’t get the test. Medicaid doesn’t have the ability to reimburse for it.
“Your ability to get a test and how quickly it can be done depends upon your insurance, depends upon where you live,” Shoshara said. “It’s very frustrating as a provider because I can’t treat all patients equally because of it.”
Instead he sends those patients to health systems that, these days, might be so backed up it could take two to three days to get tested, and another few days to find out results.
When Shoshara’s college-age son got COVID-19 over the summer, his son isolated in the basement.
“I sealed off his vents so his air would not go into air in the rest of the house,” Shoshara said. “I did wear almost full PPE. We have a bedroom and bathroom down there for him. He stayed there almost the entire time. I would go down there in everything but a gown and leave disposable plates, disposable forks, the food. … It made me empathize all the more for families who don’t have the ability to do what we did.”
As for Dasgupta, they could have booked an appointment to get a test for their son within 48 hours at a private testing location. But given his asthma and other factors, they didn’t want to wait.
Instead, they scheduled a same-day appointment at Chicago’s free testing site at Dr. Jorge Prieto Math and Science Academy in the Belmont-Cragin neighborhood on the Northwest Side.
The line of cars waiting for drive-thru testing snaked around several blocks. After some confusion and miscommunication with workers at the site, Dasgupta’s husband, Michael Burns, and their son parked the car and joined the walk-in line.
“We were in and out in 15 minutes,” Burns wrote in the chat session of our Zoom interview.
Their son tested negative for COVID-19.