Arizona appears far behind many other states in coronavirus testing — Here's what we know about the numbers

Lisa Williams went all the way to the top.

When her doctor in Apache Junction told her she couldn't be tested for the new coronavirus, the 53-year-old called Gov. Doug Ducey's office.

"I was really in a panic yesterday," she said. "I don't understand why it's taking so long to be able to just get tests."

Her doctor was using outdated information to deny her a COVID-19 test, the Governor's Office told her.

Despite Williams testing negative for the flu and strep throat, her doctor would only sign off if she'd recently traveled or been in contact with someone who has COVID-19 — which is no longer the state testing guideline.

Williams has had symptoms consistent with the virus for about 10 days. She's tried going back and forth with the doctor's office with no luck. She tried to reach the Pinal County Public Health Department but couldn't get through to anyone.

"How can you count on all these numbers that are coming out if nobody's being tested?" Williams said. "I don't think that I'm the only one."

Many Arizonans fear they have the virus but can't get confirmation.

In some ways, the lack of testing in Arizona reflects nationwide problems. Supply chain obstacles, including availability of available protective gear and nasal swabs, are affecting all states' ability to test broadly.

Testing protocols have also been an issue: When the first case was confirmed in Arizona Jan. 26, protocols focused on people who had traveled to an affected area or who had contact with a person known to be infected. Meanwhile, the virus may have been circulating throughout Arizona communities.

By the time the state's first case of community spread was detected and announced March 5, protocols included people who were severely ill with no other known cause of their sickness. But, again, protocols did not include those with mild symptoms who could have been spreading the virus to others.

In other ways, Arizona appears to be falling behind its neighbors.

Doctors say they struggle to get tests and solid answers about testing. Patients say they can't figure out who to contact to get a test. And health officials say there's not enough equipment needed for tests to go around right now.

Health care professionals and patients also have found testing criteria confusing and incomplete. And the public doesn't know how many people in Arizona have been tested overall, because the state's numbers do not include the private labs now testing for coronavirus.

States with fewer residents show more tests completed

Arizona had one of the country's earliest known COVID-19 cases, a member of the Arizona State University community who had traveled to Wuhan, China. The state also had a case of what's known as community spread, meaning the individual didn't have known contact with an area or infected person, before many other states.

Despite these early warnings, the number of tests the state has publicly reported remains low for its size. States with similar populations appear to have tested far more people than Arizona has, according to the COVID Tracking Project, which relies on numbers provided by states.

States also are tracking how many tests they've done and how many positives they have in different ways — some include numbers from private labs, while others don't. In Arizona, state numbers don't reflect private testing, meaning the actual number of tests completed to date could be much higher.

Because the state's numbers are not comprehensive, it's impossible for the public to know just how prevalent testing is in Arizona. Arizona Department of Health Services Director Cara Christ has indicated that private labs also report only positive results to the state rather than the total number of people tested, and it wasn't immediately clear whether DHS could implement broader reporting requirements.

The Arizona Republic this week asked Phoenix-based Sonora Quest, one of the first commercial labs that began testing in the state, to provide the number of people the company had tested for COVID-19.

"The number of samples that have been sent to Sonora Quest is proprietary and confidential," the company replied.

As the publicly reported testing numbers stand, Arizona looks to be behind states with much smaller populations.

In New Mexico, for instance, officials are performing tests at a state lab and with a company called TriCore Reference Laboratories. Nearly 3,000 people had been tested there as of March 19, compared with fewer than 400 reported tests in Arizona.

That's despite New Mexico running into its own hurdles: The state has machines it wants to use for testing that the Food and Drug Administration has yet to approve for that purpose, according to the Santa Fe New Mexican.

Idaho's numbers, which include both private and public labs, top 600, with 445 of those done by a state lab — higher than the number of tests done in Arizona's state lab. In North Dakota, the state's public health lab has conducted more than 800 tests.

In Colorado, which had reported about 3,000 tests as of March 19, the state took early steps to be prepared for an increase in testing, said Ian Dickson, a spokesman for the Colorado Department of Public Health and Environment.

Colorado Gov. Jared Polis “has stressed the importance of testing from the beginning, and the state public health department initiated surge planning in January,” Dickson said.

The surge planning included ordering supplies, training staff and putting procedures in place, which allowed Colorado to have the appropriate Centers for Disease Control and Prevention procedures in place the day after the agency announced updates to address initial testing issues, he said. Cross-trained staff also have helped meet demands for testing.

Testing capacity set to increase, but data remains limited

Some private testing has ramped up in Arizona in recent days, including drive-up options in Coconino County and at the Mayo Clinic in Phoenix. Other private labs, such as Sonora Quest and LabCorp, say they're also able to test for the virus now.

Arizona's state lab can process about 450 samples per day, Christ has said. As of Tuesday, Christ said private lab Sonora Quest could handle about 1,000 per day, with hopes of getting to about 4,000 per day.

Christ said the state doesn’t collect negative test results because test results can change over time. You could be negative, then get sick and later test positive, she said.

“Having that whole community look at what is negative just gives you what that was at that individual point of time, but doesn't give you real-time knowledge of what's going on in the community,” she said.

People with mild to moderate symptoms currently cannot get tested in Arizona, Dr. Rebecca Sunenshine, director of disease control for the Maricopa County Health Department, said in a letter to Maricopa County health providers on Wednesday.

While some commercial laboratories have the capability to test for COVID-19, there is a lack of specimen collection supplies including nasal swabs, she wrote. And primary care providers say they lack adequate personal protective equipment supplies to collect specimens.

"Unfortunately, the supply chain is interrupted. We have raised this need to the very highest levels of government and elected officials," she wrote. "But we don’t have a solution yet."

On Wednesday, Christ said the state was expecting a shipment of personal protective equipment from the Strategic National Stockpile, which would then be distributed to the counties.

The state had its own cache of supplies, but it has already been used up, she said.

Testing limits create confusion

Banner Health, in partnership with the Arizona Department of Health Services and Sonora Quest Laboratories, could change the testing landscape in Arizona. The plan is to have testing for people with symptoms and no doctor's order will be needed, though patients will be required to do a pre-screening by telephone.

There has been no specific information about when that will start, and most patients have yet to see an impact. Those who believe they could have coronavirus have contacted news outlets and written on social media about how difficult it has been to obtain a test.

Several who shared their stories with The Arizona Republic described similar paths.

They felt sick in a different way than with past respiratory illnesses. They navigated bureaucracies by calling various health care providers and agencies. But they couldn't get a test.

Now, they don't know if they should be fully isolated from family members. They don't know if they should notify people they came in contact with that they're sick.

Limited testing early on may be causing Arizona to look further behind than other states, said James Hodge, a public health law professor at Arizona State University.

Arizona testing guidelines now say severely ill people should be tested, but only if other respiratory illnesses have been ruled out. For weeks prior, people were told they could only get tested if they had traveled to countries with widespread of the virus or been in contact with a person who tested positive — despite early evidence of community spread.

There seems to be lingering confusion among Arizona health professionals about who can be tested and where because of these late changes.

“We may have hung onto those beliefs too long,” Hodge said.

States that expanded their criteria faster, on the other hand, may have ramped up testing more quickly, he said.

“I think as a metro area, we've appeared, for a little while longer, unscathed,” Hodge said. “That was a false premise, probably. And consequently, when you appear unscathed, you're not seeking to run massive amounts of tests.”

Small sample skewing numbers

Limited testing also means the number of cases in Arizona and the nation is artificially low, according to health experts.

Or, as Ahwatukee family physician Dr. Joy Wolfe put it on Facebook: "You can’t have cases when you don’t have the ability to test for them."

Wolfe told The Republic she's fed up with what she characterizes as misinformation coming from county and state health officials about COVID-19 testing. It's a "merry-go-round" of answers where patients call the health department and are told to call their family doctors, she said, but family doctors aren't able to get tests or personal protective equipment.

In the meantime, patients are meandering around the city and their community, ill and potentially sharing the virus with others in the state, she said.

"We are on a path that is going to mirror the disaster that has occurred in Italy," she said.

Wolfe said she tested a fellow health provider who had symptoms of the illness, but it took two tests and a lot of phone calls and haranguing before she got the results — four days after they conducted it. It was negative.

"If we lack the ability or will to test patients, of any age, we are lacking the ability to understand the spread, infectivity, intensity and potential mutation of this virus," she wrote on Facebook Thursday.

Dr. Frank LoVecchio, an emergency room physician at Valleywise Health, said testing is not a silver bullet. But he pointed out that South Korea, which had mass testing for COVID-19, did not have severe spread.

"They figured it out — who had it and who didn't," he said. "If you tell people they have it, people tend to take it a little more seriously. They are more stringent about social distancing."

Preventing a big surge of patients and severe illness all at once, in turn, buys time for scientists to develop a vaccine and a treatment, he said. And he said that spreading out cases over time eventually creates a level of community immunity.

Testing also can give people peace of mind and a sense of control. The HIV outbreak was terrifying and people were extremely worried, for instance, but, after several years, there was a test and it is now easy to get, he said. H1N1 influenza in 2009 also was frightening and contagious, but there was a test and, eventually, a vaccine.

In the U.S., people are buying up groceries and toilet paper because it's a modicum of control in a situation where they can't access tests or a cure, LoVecchio said. It's a way to feel they have done what they could to take care of themselves and their families.

As far as why other states have more widely available COVID-19 testing than Arizona, LoVecchio said he didn't have an answer.

Shortages of critical supplies

The Arizona Department of Health Services acknowledged the state is experiencing shortages of personal protective equipment and nasal swabs needed to conduct the test, as many other states are.

Health care systems often use the same suppliers, according to assistant director Jessica Rigler, so they’re all requesting the same supplies from the same handful of vendors.

“If you think about what’s happening in the grocery stores with toilet paper, it’s the same thing,” she said. “These things are just not coming in fast enough from suppliers to meet the demand.”

The state is accelerating resource requests to the federal government, Rigler said, while encouraging health care providers to continue working with their normal vendors to see if they can get more supplies that way as well.

“It’s a very fluid situation, so what’s in stock in the state today may be very different tomorrow as more supplies are made available,” she said.

Rigler stressed that Arizonans should be doing their part for the community by allowing priority groups, such as older adults or people who live in a setting with many older adults, to be tested first.

As for testing of health care workers and emergency responders, she said the state is “ensuring they prioritize” that, but was not aware of how many, if any, tests had been done on health workers.

As the virus has spread throughout the country, private testing companies and hospital systems have promised to start their own testing. At news conferences in both Phoenix and Tucson this week, Health Department Director Christ named Utah-based Arup as one of the commercial labs that would come online in Arizona.

But in a statement to The Republic on Tuesday, a spokeswoman for Arup said that due to supply chain challenges, the company would limit its testing to Utah.

"Our main concern is providing patients with quick turnaround times and at this point, with the limited resources needed for testing, we want outside clients to use labs where there will not be a wait due to supply shortages," the statement said.

As of Friday, Utah had conducted 2,147 tests in both state and private labs, according to the COVID Tracking Project.

If you can't get a test, stay home

For patients, there's no easy, palatable answer for how they can get tested if they're getting mixed answers from various medical professionals.

But one thing is clear: They should stay home.

LoVecchio, the ER physician, said he saw a patient in the emergency department the other day who was sick but not severely ill. She had a sore throat and cough.

She tested negative for other major respiratory infections, including the flu, but LoVecchio couldn't test her for COVID-19 because she didn't fit the state's current testing criteria.

She wanted LoVecchio to write a note saying she did not have COVID-19 because she wanted to go back to work. LoVecchio had to say he could not do that. Instead, he told her she had to assume she did have COVID-19 and that she needed to stay home and away from other people.

"I talked to her for a while, and she left very frustrated," he said. "My patients are not happy. To be honest, I am not super happy. I understand."

The availability of testing is not what will ultimately affect the spread of the outbreak, Sunenshine, the county health director, wrote in her letter to health providers on Wednesday.

Staying home when sick, washing your hands, not touching your face, and avoiding unnecessary physical contact and group gatherings of more than 10 people will.

It's critical for providers to tell their patients with any respiratory illness to self-isolate at home, drink fluids and rest. The vast majority of people do very well recovering at home, she wrote.

Williams, the patient who hasn't been able to get tested, is doing just that.

She has chronic obstructive pulmonary disease and has been staying home and avoiding outside contact since she got sick. But she has seen her husband, who is older and has diabetes, and their daughter, who has gone back and forth between houses.

Williams is worried she will infect them. She said she feels frustrated and anxious on top of being sick to the point where she feels like all she can do is lie down.

A test could help ease some of that anxiety.

"If I don't have it, imagine how much better I would feel," she said.

Reach reporter Rachel Leingang by email at rachel.leingang@gannett.com or by phone at 602-444-8157, or find her on Twitter and Facebook.

Support local journalism. Subscribe to azcentral.com today.