BOSTON — First came the tickle in the throat. Then, a hacking cough. Then, a shortness of breath she had never experienced before. Hillary King, a 32-year-old consultant in Boston who lives down the street from a hotel where dozens of Biogen executives contracted the new coronavirus, decided that she had better get tested.
But getting tested is far easier said than done, even as testing slowly ramps up nationwide. Five days after President Trump announced that anyone who wants a test can get a test, Ms. King’s experience shows how difficult it can be in the United States to find out if you have the coronavirus.
Many who fear they have the virus have faced one roadblock after another as they try to get tested, according to interviews with dozens of people across the country.
Some have been rejected because they had no symptoms, even though they had been in proximity to someone who tested positive. Others were told no because they had not traveled to a hot spot abroad, even though they had fevers and hacking coughs and lived in cities with growing outbreaks. Still others were told a bitter truth: There simply were not enough tests to go around.
“The system is not really geared to what we need right now, what you are asking for. That is a failing,” said Dr. Anthony S. Fauci, who leads the National Institute of Allergy and Infectious Diseases, in testimony before the House Committee on Oversight and Reform on Thursday. “It is a failing. I mean, let’s admit it.”
Dr. Fauci added: “The idea of anybody getting it easily the way people in other countries are doing it, we are not set up for that. Do I think we should be? Yes. But we are not.”
In some parts of the country, demand for the tests is low. Elsewhere efforts are underway to make testing easier. States like Colorado have even instituted drive-through testing to streamline the process.
But even there, demand has far outstripped supply. By 11 a.m. at one drive-through lab in the Denver neighborhood of Lowry on Thursday, a three-hour line of cars had formed. The clinic had to stop allowing more vehicles.
The inability to test widely in the United States — which is far behind other countries in this regard — has severely hampered efforts to contain the outbreak. An early test rolled out to states by the Centers for Disease Control and Prevention was flawed, and delays have continued ever since. Public health experts have warned that each day people do not know whether they have the virus, they risk spreading it more widely.
In cities that have experienced serious outbreaks — Seattle; Boston; New Rochelle, N.Y. — patients who fear they have coronavirus describe Kafkaesque quests to find out their status.
“They said they do think it is possible that I have the virus,” said Ms. King, who spent five hours in the emergency room at Massachusetts General Hospital on Wednesday. “They said they really want to test me.”
A doctor told her she did not meet the criteria since she had not traveled abroad or had any contact with a person who had tested positive, but because she was so sick he tried to get an exemption from the state’s Department of Public Health. When it was not granted, doctors sent her home, where she plans to stay in self-quarantine for 14 days.
The number of tests in Massachusetts were said to be so scarce that even people who were in close contact with some of the dozens who tested positive at a recent Biogen conference have not been given the test. At least one Biogen employee has been ordered to quarantine at home, but he has not been given the test because he is not showing symptoms.
Hours after Ms. King was sent home, doctors were informed that a new batch test kits was being made sent to Massachusetts. Public health officials said that they expected enough kits to test 5,000 people and that two commercial labs — Quest Diagnostics and LabCorp — have started testing. On Thursday, one returned a presumptive positive case, which was included in the state’s numbers.
But many in the medical community said that far more tests were needed.
“In a large city, you should be doing at least 1,000 a week, and ideally you’d be doing 10,000,” said Marc Lipsitch, director of the Center for Communicable Disease Dynamics at the Harvard T.H. Chan School of Public Health. He said the U.S. Department of Health and Human Services has allocated a “laughably small number of tests” to look for signs of community transmission.
Fewer than 2,000 people in total have been tested since New York State was approved to test in-state in late February, even with an escalation in testing in the last several days, according to officials.
For now it appears that a large majority of New Yorkers who end up having the coronavirus are likely to not know it during the duration of their illness because testing is so limited.
Several state labs in California have been unable to use some of the state’s more than 8,000 test kits because the kits lack chemical ingredients known as reagents, Gov. Gavin Newsom said in a briefing on Thursday.
Mr. Newsom compared the problem to having a printer without ink cartridges.
“We want to test more people,” Mr. Newsom said. “This has been an issue in terms of providing more tests,” he said of the missing components, “and we hope it is resolved very quickly.”
For days Mr. Newsom has lamented the lack of testing capabilities in the state. On Tuesday he pounded the lectern in a live television briefing and said, “The bottom line is that we need more tests.”
Some places, like Missouri, have more testing capacity than demand. The state laboratory can test about 100 specimens per day but is doing less than 20, according to Lisa Cox, a spokeswoman for the Missouri Department of Health and Senior Services. Sixty-five people total have been tested in the state, and all but one turned out negative.
But even states that have seen few cases are preserving their tests for patients who are viewed as most at risk.
“You want to be judicious,” said Dr. Dora Mills, an epidemiologist and the chief health improvement officer for MaineHealth, the largest health system in Maine, which has seen only one patient test positive, and no sign of community spread. “Any time you have an epidemic, you have two epidemics — you have the epidemic of the disease itself, and you have the epidemic of fear.”
But in places that have seen cases spike in recent weeks, many people expressed frustration that the more likely they were to get the virus, the less likely they were to have access to a test.
In Washington State, where at least 378 people have tested positive and 31 have died, public health officials spoke of having to ration the tests and living hand-to-mouth with testing supplies. “At this time we are limiting testing to preserve availability for our most vulnerable,” said Debra Carnes, a spokeswoman for PeaceHealth Columbia Network, a nonprofit health system that operates clinics in Washington, Oregon and Alaska.
Overlake Medical Center in Bellevue, Wash., has been running low on nasal swabs to collect specimens from patients.
“We expected another shipment tomorrow,” said Morgan Brice, a public relations specialist.
One mother in Kitsap County, Wash., said her doctor told her that the state was so low on tests that only one of her children could be tested.
That left many anxious people with mild symptoms running a never-ending gantlet: primary care doctors referred them to state public health officials, who referred them to emergency rooms, who referred them back to primary care doctors. Some patients said they gave up and went into self-quarantine, and had to make peace with the idea that they will never know for sure if they had the virus.
Christy Karras of Seattle tried to get tested after some people at a party she attended came down with flu-like symptoms. But her doctor did not have the test and advised her that it did not matter whether she had the virus: Either way, she had to stay home.
“From a public policy standpoint, that’s true,” Ms. Karras said. “From an individual standpoint, you really want to know what you have. It was very frustrating to me because we were all trying to do the right thing.”
Finally, Ms. Karras contacted the Seattle Flu Study, a research project to study the spread of influenza in the region. She ordered a kit, sent her sample and heard back: She was positive for the coronavirus. (Since then, the flu study has been told by federal authorities to stop doing that kind of testing since it is not properly certified.)
Even those who have good reason to think they may be infected are being denied testing.
The Grand Princess cruise had 21 people on board test positive for the coronavirus. After docking in Oakland, Calif., this week, passengers have been quarantined at military bases.
Peggy Moy, 71, a retired nurse and passenger, is still waiting to be tested. She had a sore throat and stuffy nose during the cruise, which she reported, but by the time she left the ship, those symptoms had gone away.
She is worried for her husband, who has lung cancer, and assumed, as other passengers had, that she would be tested as soon as she got to the base. So far that has not happened, though medical personnel have been taking their temperature twice a day.
Not knowing is making Ms. Moy nervous, as hundreds of people from the ship, mostly older guests, are in quarantine on the base now, and many of them may have been exposed to the virus. People are wearing masks, she said, but are still mingling in common areas, like the lobby where people get coffee and water. They take off their masks to drink and eat.
“I would like to know who among us is positive,” Ms. Moy said by telephone. “I don’t know. None of us know.”
Yet for those who do manage to get tested, the experience can be byzantine. Andy Carvin, 48, a senior fellow at the Atlantic Council in Washington, went to the Howard County General Hospital in Maryland last Thursday with a persistent fever and cough following a meeting with foreign journalists in February.
It started well. Health workers had cleared a path for him to walk to a back room. One doctor wore a large hooded mask and helmet and “looked like an Imperial Guard in ‘Star Wars.’”
They ran several tests, including of his blood. They swabbed his nose and throat about 10 hours later. But then it took a week to get the results back.
With no clear point of contact, Mr. Carvin made multiple calls — to the hospital, the state health department and two county health departments — to try to get the result. Three days later, he was told that one of the two swabs taken had never been sent to the state. At one point, he was given the wrong result. He called it “covid19purgatory.”
On Thursday, he finally got the good news: negative.
Reporting was contributed by Sabrina Tavernise from Washington; Sean Keenan from Atlanta; Patricia Mazzei from Miami; Wudan Yan from Seattle; Kate Taylor from Cambridge, Mass.; John Eligon from San Francisco; Christopher Dixon from Charleston, S.C.; Campbell Robertson from Pittsburgh; and Vanessa Swales and Nicholas Bogel-Burroughs from New York.
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