Weeks into a national 2019 novel coronavirus outbreak that has killed dozens and infected thousands, the uniquely American saga of struggling to obtain a diagnostic test for the deadly disease has strained doctors, sick patients, and family members across the country.
Testing capacity has been ramping up amid a deluge of White House vows to do more. Meanwhile, stories of frustration, sorrow, and rage were ubiquitous.
One 29-year-old New York City doctor—who asked not to be identified over fear of professional retaliation—said he hadn’t even been able to get his younger sibling tested, despite a persistent cough and the fact that they recently returned from a study abroad program in a European country with a serious outbreak.
“It’s been difficult,” the doctor told The Daily Beast Monday. “Despite all of my credentials, none of it has been helpful in sorting this out. It’s incredibly frustrating for us who work in the system and then find it difficult to navigate when your family members need it most.”
As many others told The Daily Beast, the doctor said he tried the New York coronavirus hotline, emergency departments, hospital operators, urgent care centers, and the state health department, to no avail. The New York Department of Health did not immediately respond to a request for comment on Monday except to point to its testing criteria, which appeared to include the potential case of the doctor's sibling.
“It is impossible,” said the doctor, noting that he agreed patients should be discouraged from going to the emergency room if they aren't experiencing severe symptoms. “But, for me the crux is, then where should people be getting tested? How do patients figure that out? Because as a doctor, I don’t know how to figure that out.”
And though the doctor himself had no symptoms, if his sibling has the disease, he could be transmitting it to patients.
“You’re in this, like, moral dilemma of how we handle this situation,” he said. “We’re in the eye of the storm right now; the worst is about to come.”
One woman, who said she wanted to help shed light on the issue but asked to remain anonymous over fear of drawing undue attention to her family, told The Daily Beast on Monday that her 95-year-old grandmother, based in White Plains, New York hadn’t been able to get a test. This despite documented exposure to a confirmed case of the virus through a health aide, the woman said.
“I think my family’s situation illustrates a concerning gap in protection,” the woman, who is based in Maryland, told The Daily Beast on Monday. “My grandmother could not immediately access testing, even though her health aide’s father has been hospitalized with the virus. She and my mother are on a priority list for testing, but we have received no timeline from the state regarding when testing will actually happen.”
The Centers for Disease Control and Prevention (CDC) has come under fire in recent weeks for a botched diagnostic test kit rollout that left the U.S. far behind other countries in documenting confirmed cases of the virus, even though it may have been spreading for some time.
“In the meantime, the aide agency won’t give her another aide until she can prove she doesn't have the virus, so my mother—who is herself in her sixties—has to take care of her, potentially exposing herself to the virus as well,” the Maryland woman continued.
“They have both done everything they can to sanitize the apartment and keep reasonable distance from each other, but it’s a small living space, so there's only so much they can realistically do,” she said. “The hospital told my grandma that she can't be admitted without symptoms, so they don’t have the option of having her wait there.”
“The process is pretty confusing and frustrating for everyone involved,” she said.
The CDC has said it recommends tests for patients who have recently traveled to countries with known outbreaks, patients who have been exposed to confirmed cases of the virus, and others in high-risk groups with severe and unexplained respiratory illness with no known connections to other cases.
Sarah, a nurse practitioner in New Jersey who works at women’s health clinics—and asked not to be identified by her last name over fear of professional retaliation—told The Daily Beast Monday that she had a patient with severe viral pneumonia who traveled through an airport where a TSA member had a confirmed case of the virus. She has not been able to get her tested, she said.
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Sarah added that she was told that her patient likely would not qualify for a test because she had not had definite exposure to a confirmed case of the virus, though federal test criteria have since loosened. Sarah said she eventually ordered tests through private lab companies, but they hadn’t arrived yet as of Monday morning.
After this story was published, a CDC spokesperson emailed The Daily Beast, “I am not aware of this individual case and can’t respond to specifics. However, at all times, clinicians have discretion to test patients based on their individual assessment of that patient’s illness and risk of exposure. Our clinical team working with state and local health departments to assess Persons Under investigation has not said no to any request for testing.”
The New Jersey Department of Health did not immediately respond to a request for comment from The Daily Beast on Monday.
“How do we confirm a case if we're not able to test our patients?” Sarah asked, adding that the CDC told her to call the state health department, which told her to contact a hotline, which told her to contact a provider.
“I am the provider!” Sarah said. “It’s a disaster. It’s an unmitigated disaster.”
“And here is my patient, she’s quite sick, and she doesn't want to go to any emergency room because they can’t test her,” said Sarah. “She doesn't want to be exposed to anything else.”
Sara Tucker, who lives in Fort Worth, Texas, claimed in a now-viral Facebook post that her doctors were “pretty sure” she was a case of the novel coronavirus but that she was not a high-risk enough patient to get tested due to the shortage of available kits. Tucker did not immediately respond to requests for comment from The Daily Beast on Monday.
Some Americans have had better luck.
A 25-year-old San Francisco-based financier who’d come into contact with a confirmed patient of the virus told The Daily Beast on Monday that she was able to get a test on Sunday, but only after putting forth an “incredibly strenuous” effort that included six hours of research, several phone calls, and even a text to a local politician.
“I think I would still be here waiting if I had not pushed so hard,” said the 25-year-old, who asked to remain anonymous over fear of professional consequences from being associated with the deadly illness. “It was incredibly difficult to get a test.”
The woman told The Daily Beast that she expected her results to come back on Thursday, more than a week after she may have come into contact with the virus, when she taught a private Pilates class to a friend who contracted the disease on a work trip. That friend contacted her a few days after the class to say she had a confirmed case.
“When she texted me that she was positive—the illness [was] finally real to me,” said the 25-year-old. But by then, she had already flown to Westchester, New York.
The woman started coughing on Saturday, then she “immediately called the state hotline,” she continued. She waited for about 30 minutes, and was added to a list, she told The Daily Beast. Then she decided to reach out to her Westchester County legislator, Catherine Borgia, who had offered her phone number in a Facebook post for anyone having trouble getting a test for the coronavirus.
“She flagged my name to the state hotline, but it was all she could do,” said the 25-year-old, who was able to get an appointment the next day.
“I called [the clinic] four times before I got someone. When I told them my symptoms and exposure—and that I had found an appointment online—they said, ‘OK, come, and call when you get here,’” she said.
The test itself only took about five minutes, she said, but she won’t know the results until Thursday.
Sulome Anderson, a 34-year-old journalist who normally splits her time between New York City and Beirut, said that she began violently and “uncontrollably” coughing last Tuesday on a train from Washington, D.C. to New York.
“I got home and started to feel extremely unwell,” said Anderson. “What scared me is that it happened so fast, and I was on a train with a bunch of people and wanted to make sure I hadn’t infected anyone.”
Anderson said she first called the state’s coronavirus hotline, where an official told her she should not get tested unless her fever was over 103-degrees. She was coughing so hard she could not speak, and was having trouble breathing, she said.
“She just said, ‘We don’t have enough tests,’” said Anderson. “But I thought, ‘If I infected someone on the train, it would really haunt me, so I called Mount Sinai Beth Israel around midnight, and they said, ‘Ignore the hotline. Come in, we just got permission to use the test more widely.’”
“The entire policy has been chaos,” said Anderson. “They haven’t known what to do from one day to the next; it changes constantly. It’s out of control and really dangerous.”
During several hours in isolation at the hospital, Anderson said she was tested for the flu, strep throat, and novel 2019 coronavirus. She got home after 6 a.m., where she self-quarantined for three days until she got her test results back: They were negative.
But a nurse warned her that the test was only about 70 percent accurate, said Anderson, who acknowledged how lucky she was to be tested at all, considering the widely publicized nationwide shortage.
Anderson said she flew to Toronto to be with her husband after she was cleared by her test. She said she was “psychotically careful” on the plane, wearing a mask and gloves and staying away from other passengers.
In a more encouraging case, a 25-year-old described a comparatively easy process for getting a test in Birmingham, Alabama over the weekend.
Sarah, a woman who asked her last name be withheld over fears about her medical information becoming public, said she was worried she had contracted the coronavirus through her job in the service industry, when she developed “all the primary symptoms.”
Sarah said that she’d heard that a Birmingham-based lab got approval to administer tests at two locations, where they were offering drive-through testing in the city’s suburbs. Once her primary care physician recommended she use one of those facilities, Sarah said it was relatively simple.
President Donald Trump announced on Friday that several new test kit-related initiatives would be rolled out in the coming days and weeks, including drive-through testing in select locations, including Alabama, in addition to partnerships with private companies to expand the current U.S. testing capacity.
After visiting a website on Friday, then calling a number and getting a recommendation for the test, she downloaded an app with a virtual patient portal, where she uploaded her insurance and identification. After a 15-minute drive and a four-hour wait, she was seen by a doctor and swabbed for the coronavirus, the flu, and other respiratory illnesses, she said.
“She administered the test through my car window—a single nose swab could test for everything—and I was told I would have results in the app within 24 hours,” said Sarah, who got her negative coronavirus test results on Saturday morning around 9:30 a.m.
“I was massively relieved,” said Sarah, who was on Monday afternoon still waiting for her flu results. “I wasn’t worried so much about myself, but the people I work around and serve.”
—Reporters Pilar Melendez and Emily Shugerman contributed to this story.
