In late February, several weeks before the coronavirus outbreak shut down American cities and rose to the level of a national crisis, Kerri Rawson began to feel sick. “I was hit out of nowhere with what feels like the flu at first,” says Rawson, who also has asthma and takes cardiac medication for high-blood pressure. “You’re fine, and then all of a sudden you have a fever below 100°F and chest congestion.”
Rawson is a 41-year-old writer and mother of two in Florida. (You may recognize her name from her 2019 memoir, about growing up as the daughter of a serial killer.) Her fever lasted for 11 days, during which time her children also developed above-normal temperatures. Her son’s fever rose to 102°F but tapered off in a few days; her daughter, however, developed a barking cough that Rawson had never heard before. A doctor diagnosed the 11-year-old with bronchitis.
“That’s when my first conversation about COVID-19 started,” Rawson says. On March 6, still struggling with fever and chest congestion, she asked her family doctor whether she might have contracted the coronavirus. He was skeptical. (There were, at that point, fewer than 10 reported cases in Florida.) “He asked me questions about traveling and contact,” Rawson says. “He said, ‘Our hands are basically tied by the CDC [the U.S. Centers for Disease Control and Prevention]. We can’t test. Call the state health department, call the local one.’” Rawson did so, but was told they were only administering tests to those who had traveled internationally, had contact with someone who had, or were in critical condition, none of which described her.
Over the following week, Rawson’s condition worsened. Her blood pressure rose, her heart rate was up, and she began to have shortness of breath. Rawson saw a family doctor. “I just sort of collapsed on her table,” she says, and told the doctor she was worried it might be COVID-19.
The doctor sent her to the emergency room. “I was basically in hypertensive crisis by the time I got to the ER,” Rawson says. She was admitted to a hospital in Altamonte Springs, FL, and placed in a room on an observation floor with a sign on the door requiring nurses to take precautions like mandatory gloves and surgical masks. Doctors tested her for “everything under the sun,” she says, but not COVID-19.
Courtesy of Kerri Rawson
Kerri Rawson
It had now been nearly two weeks since Rawson first noticed any symptoms, and she still had not been tested for the virus—a sadly common tale during the early weeks of the pandemic, when U.S. officials overwhelmingly failed to make widespread testing available to sick Americans. Florida’s pandemic response, in particular, was compromised by meager funding to state and county health agencies and cuts to research funding, according to a Tampa Bay Times investigation, as well as Governor Ron DeSantis’s slowness to issue a stay-at-home order.
On March 12, Rawson received a CT scan. When doctors saw the results, “they freaked out,” she says. She was diagnosed with bilateral pneumonia. Most concerningly, the scan of Rawson’s lungs revealed “ground-glass” opacities—abnormalities in the lungs that show up as grayish patches, resembling ground glass—that are common among COVID-19 patients. “When they saw the ground-glass look in the lobes, they contacted infectious disease, and that’s when everything hit the fan,” Rawson says. “Friday morning, the nurse comes barreling in, tosses all my stuff on my bed. They throw a sheet over me. They put me in the hallway, they wipe down my bed, put a mask on me, and rush me through a couple floors up to the zero-air containment room.”
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Finally, on March 13, after being moved to an isolation room on a progressive care floor and prescribed two different antibiotics, Rawson received the nasal and throat swab test for COVID-19. Six hours later, the test came back negative.
Rawson believes it was a false negative, and that the test was not administered correctly. “I ended up having a really bad nosebleed and my swabs were covered in blood,” Rawson says. “[A nurse] in the ER said that could have even affected the test.” (We’ve reached out to the hospital, AdventHealth Altamonte Springs, for comment in response to Rawson’s claims in this article. The hospital has not provided an on-the-record comment.)
Soon she was kicked out of the isolation room and moved back to the observation floor. “They ended up having to evict me at like 1:00 a.m. because they needed it for someone else,” she says. “And the night nurse didn’t really want to be around the COVID [patients]. She wasn’t really having any of it. I had to, like, push my dumb IV pole around and collect all my stuff when I was really sick.” Rawson was told the room was needed for another suspected COVID-19 patient.
On March 14, she went home, where she spent a week battling a difficult recovery from pneumonia, including suffering from neurological issues and sleep deprivation—“it was horrible,” Rawson says. She wound up back in the ER a week later when her fever returned. By mid-April, she still had not fully recovered.
Reason to be skeptical of test results
Rawson’s experience with the virus—assuming this was indeed COVID-19—was extreme, but her testing experience is not uncommon. The nasal swab diagnostic test, which involves amplifying small traces of DNA using a laboratory technique known as polymerase chain reaction, or PCR, is far from infallible. One preprint article from China estimates the false-negative rate to be as high as 30%.
In practice, that figure would mean that “if you tested 100 people who all had COVID-19, 30 of them would still get a negative result,” says Dr. Catherine Carver, a PhD student in Population Health Sciences at the Usher Institute, University of Edinburgh.
This would also mean that thousands of Americans have received test results telling them that they do not have the virus when in fact they do. “This is a significant problem because it could create false reassurance for the people getting the false negative result that they are well and won’t infect other people,” says Carver.
In early April, a Yale physician grew alarmed and wrote a New York Times op-ed urging patients who have coronavirus symptoms but test negative to assume they are positive. Citing anecdotal evidence from fellow doctors, he noted that such situations are “uncomfortably common.”
So far, there is little reliable research into overall COVID-19 test performance. But it’s dangerous to place too much faith in the test’s verdict, says Dr. Colin West, a physician and professor of medicine at the Mayo Clinic in Rochester, MN. “Testing is still going to be a very important part of managing this pandemic,” West says. “But we need to understand that the tests aren’t perfect. No test is perfect. And if there’s a certain percentage of false negative results that we may expect, we need to be cautious and not celebrate too soon if we get a test result that comes back negative.”
