Utah patients who tried to get tested for coronavirus describe what happened

(Francisco Kjolseth | The Salt Lake Tribune) Crews set up three tents for drive through testing for COVID-19 outside University of Utah's new Sugar House clinic on Saturday, March 14, 2020. The in-car testing facility will be open to the public Monday but requires a call to be screened ahead of time for those exhibiting symptoms.

Editor’s note: The Salt Lake Tribune is providing readers free access to critical local stories about the coronavirus during this time of heightened concern. See more coverage here.

Alastair Bitsóí thought he’d be a shoo-in for coronavirus testing.

Bitsóí developed the signature cough and fever of the virus on Wednesday, about three days after he flew home to Utah from New York City, where there are more than 150 confirmed cases. He worried that others on his flight might be infected and unwittingly spreading COVID-19.

But after long queues for an online doctor's exam, a dead-end call to Utah's automated coronavirus hotline, a negative flu test in Intermountain Medical Center's emergency room, and a daylong wait for a response from nurses at the University of Utah, Bitsóí got word:

He did not qualify for a coronavirus test.

"I need to have been exposed to a positive case," Bitsóí said, moments after his final rejection on Friday. "That's what [the nurse] told me."

Bitsóí and other Utah patients say they’ve navigated a gauntlet of automated phone trees, conflicting instructions and circular logic as they tried — and failed — to get tested for coronavirus.

A shortage of diagnostic tests has been a major setback as Utah tries to confront coronavirus — and a problem that has plagued responses nationwide. As of Friday, Utah’s state lab had the capacity to test 41 patients a day, said state epidemiologist Angela Dunn.

But the state is getting a lot more requests than that.

“Our epidemiology line is ringing constantly, and it’s almost always a provider on the other end of the line with questions about whether they should test a specific patient,” said Utah Department of Health spokesman Tom Hudachko.

While private labs expect to make more testing available in coming days, the lag in diagnoses has patients doubting state-reported numbers — and questioning the suggestion that the risk of infection had been relatively low in Utah because there was no confirmed “community spread” until Saturday.

“The most ironic part for me is, one of the main criteria they’re using to determine whether they do a test is whether or not [the patient] has come into contact with someone who’s ‘confirmed’ to have the virus,” said Lehi resident Shawn Ivey, who was denied a test on Thursday despite developing symptoms while he was traveling home from Hawaii.

“How in the world can you possibly know if you’ve come into contact with someone who’s ‘confirmed,’" he asked, "since the vast majority of those with symptoms are not allowed to test?”

‘Ten patients ahead of you’

In trying to get tested, Utah patients described a confusing battery of consultations and phone menus, all while they’re laid up with high fevers and debilitating coughs.

Ivey called his doctor on Thursday, after his symptoms had persisted for more than a week — and he was particularly concerned about being a source of infection because his wife works in food service. The doctor told Ivey to call the Utah Coronavirus Hotline directly to ask for a test, since his symptoms had developed at the end of a trip to Hawaii.

The hotline gave him a phone menu: Press "2" if you have symptoms and have had contact with a confirmed patient or traveled to an area with widespread infection, or press "1" if you only have symptoms.

Ivey said he pressed "1." A recording told him he was not eligible for a test.

He tried again, pressing "2″ this time. A recording on the hotline referred Ivey to Intermountain Healthcare’s Connect Care app, where a provider would determine whether he needed a test — even though Ivey’s doctor already said he needed a test and referred him to the hotline.

Bitsóí said he started with the Connect Care app on Wednesday when his fever shot up to over 100 degrees, but he gave up after a couple of tries because it appeared to bill him double his usual copayment and placed him in long queues for consultations: “There’s a listing of doctors, and then it just gave, ‘Eight patients ahead of you,’ ‘Ten patients ahead of you,’” Bitsóí said.

Bitsóí then went to the state hotline where he got the same response as Ivey: Use the Connect Care app.

On Thursday, as activities in the state began to shut down, Bitsóí grew more alarmed. He called Sacred Circle Health Care, a Salt Lake City clinic owned by the Goshute Tribe and designed to serve American Indian patients (Bitsóí is Diné and a citizen of the Navajo Nation) — but staff there said they were referring all potential coronavirus to Intermountain Medical Center in Murray.

So on Thursday afternoon, just before Intermountain issued public warnings against non-emergency visits, Bitsóí joined a horde of patients at the Murray hospital.

After about five hours, staff denied him a COVID-19 test but “reluctantly” gave him a flu test — “I had to beg,” Bitsóí said — which came back negative.

Bitsóí called University of Utah Hospital for a second opinion, and a nurse said that between his recent travels and negative flu test, he should be eligible. He was told to wait for a call back, which didn’t come until Friday, when a nurse told him he was ineligible.

A friend who is a health care worker advised Bitsóí to try again — but exaggerate his symptoms, he said.

“I had a cough, chest pain, body aches — but didn’t have shortness of breath,” Bitsóí said. “I guess that’s where I was supposed to lie. But for me to lie? Ugh. I’m not going to lie.”

Defining ‘affected’ areas

The nurse did tell Bitsóí he met two criteria — symptom onset and travel to an affected area — a combination that calls for testing, according to state guidelines in place since Thursday.

Tom Hudachko, spokesman for the Utah Department of Health, confirmed that "travel to an affected area plus symptoms would meet the guidance" for testing.

But, he said, details of providers' conversations with doctors could affect the outcome. For instance, Hudachko said, "Where exactly in [New York] were they? Was there ongoing community spread in that location? What was their exposure to others during travel?"

Vague guidelines as to what areas count as “affected” appear to have stymied some patients’ efforts to be tested.

A Layton woman began to develop symptoms during a cruise to Grand Cayman and Cozumel, Mexico. By the time she returned home on Saturday, March 7, she had a fever and had coughed “until my ribs were hurting,” she said.

The woman, 63, said she tried twice during the past week to get a test for COVID-19 because a friend she’d traveled with had serious underlying health conditions.

Even though doctors ruled out bronchitis and influenza and on Tuesday urged her to call the state hotline for a test, hotline staff told her she didn’t qualify, she said. The Salt Lake Tribune has agreed to not identify her, based on her concerns about being stigmatized over her illness.

The woman said she was told that because she had a runny nose in addition to more common coronavirus symptoms, she probably didn’t have COVID-19. Apparently, she said, the cruise didn’t qualify as travel to an affected area — even though the U.S. State Department had three days earlier recommended against cruise ship travel due to the risk of infection.

As of Saturday, the state’s testing guidelines linked to the U.S. Centers for Disease Control and Prevention’s travel website, which provided a map of the world with spread rated only by country; individual cities or states within the United States are not listed as affected by community spread.

Even if the CDC applied clear guidance to specific locations, testing in the U.S. has been so limited that very few locations might have qualified as “affected.”

‘Everything has been a challenge’

There are multiple reasons testing has been delayed in the U.S., but the first major disruption came several weeks ago, when federal officials at the CDC decided not to use tests devised in other countries and instead create their own test. That test didn’t work, and it took weeks for the CDC to produce and distribute a functional test.

Meanwhile, private and academic labs were unable to begin developing their own tests because the U.S. Food and Drug Administration would not remove certain regulatory hurdles until the end of February.

But once they were free to develop tests, private labs were beset by supply shortages, said Julio Delgado, medical director for ARUP Laboratories in Salt Lake City, which is now conducting COVID-19 tests for the University of Utah. Chemical reagents and consumables like tubes and other instruments were suddenly in high demand.

"There are just a lot of requests from all over the country, from laboratories, from government organizations," Delgado said. "They're doing their best to provide that, but it's difficult for them to get you a lot of the reagents."

Since obtaining clearance and supplies, ARUP’s team has been working 14- to 16-hour days to get testing online and ramp up capacity, Delgado said.

Even with all of the physical requirements in place, private labs need to have enough personnel to conduct the tests — and staffing can be precarious with a viral infection keeping employees at home and school closures preventing parents from working.

"Everything has been a challenge," Delgado said.

Meanwhile, the state lab remains hampered by a shortage of reagent — and testing in general is slowed by a shortage of personal protective equipment for health care providers, Dunn said Saturday.

"We're trying to figure out more out-of-the-box solutions to try to ensure that our health care workers are protected, such as screening sites where the provider could use the same [equipment] for multiple patients, so they're not changing to test every single patient, and also looking at industry and seeing if their [equipment] is acceptable for health care workers," Dunn said.

‘China was underestimating?’

As of Saturday, state officials had confirmed at least 19 cases of COVID-19 among Utah residents, with at least five additional cases among tourists.

But patients who struggled to get tested said official counts are meaningless because so few people have been tested.

“And here people were critical because they felt China was underestimating the number of cases?” Ivey said.

For the first time, state health officials on Saturday confirmed a case of “community spread” — that is, the transmission occurred within Utah, but its origin is not known. Community spread has long been discussed by state officials as a significant factor in understanding the risk of exposure in Utah.

But testing guidelines in Utah and nationwide have generally required that a patient must have traveled out of state or had contact with a confirmed case — effectively ruling out testing for most of those who might have indicated community spread earlier than Saturday. Only those with acute illness or who are at risk of serious illness have been able to be tested without a link to a known outbreak — and almost no well people been tested, despite increasing evidence of transmission before symptoms develop.

Patients who struggled and failed to get tested said they worried the state had restricted access to testing in order to delay acknowledging the spread of the virus.

“I feel like they’re just avoiding the situation: a major outbreak in a health care system [where] there’s gaps, that is not addressing what’s needed,” Bitsóí said.

The rationing of tests isn’t nefarious, Hudachko said.

“If we didn’t have criteria for testing, we would very quickly exceed our capacity to test those who need to be tested,” Hudachko wrote. “We try to establish testing criteria to ensure those who are most likely to be at a high risk of infection are prioritized for testing.”

But the patients say their trust is running low, juxtaposing Trump’s assurance that "anybody that needs a test gets a test,” against their own experience, as well as media reports that federal officials did not pursue aggressive testing solutions because an accurate count of infected people would hurt Trump politically.

“I find it concerning and frustrating that officials are openly talking about how there are millions of tests now available and that anyone can simply ask to be tested at the direction of their physician, which I was,” Ivey said. “That clearly is not the case.”

The Layton woman was more blunt. “President Trump," she said, “lied to me.”