It started with a bellyache and a painful tightening of her chest.

Seemingly overnight, the symptoms transposed into a dull, pulsing throb at her temples, a raw throat, sore muscles and crushing fatigue.

Jocelyn Cruz hoped to at least rule out COVID-19, the zoonotic respiratory disease that found its way to civilization at an exotic meat market in China before exploding to pandemic proportions by the time she asked for a test last week.

But when the 52-year-old San Jose artist told her doctor the cues of what ailed her, he said she wouldn’t qualify for a diagnosis.

Aside from being pre-diabetic, Cruz has no severe underlying health conditions, doesn’t work on the frontlines of the outbreak and showed none of the most life-threatening symptoms caused by COVID-19, such as labored breathing. Her physician reportedly said he couldn’t justify using scarce testing supplies on someone likely to recover with time and rest in the comfort of home.

One of Cruz’s friends around the same age with some overlapping symptoms described a similar experience. “My chest was on fire,” says Matt Cann, a 53-year-old pharma executive. “You could almost feel the inflammation from the inside, like the ‘Battle of Evermore’ was waging in my chest. And the cough was weird. Imagine coughing after your lungs have been dipped in baby powder.”

When he asked for an assessment through a private healthcare provider, his doctor basically told him tests are reserved for the bed-ridden and breathless.

Marlee Smith, a 25-year-old public policy analyst with an otherwise clean bill of health, reported similar hallmarks of the disease a couple weeks prior. “I had a sore throat,” she recalls, “I was super tired, and I thought, like, ‘OK, there’s enough in common with this coronavirus, so I should probably get this checked out.’”

On March 9, she finally called a doctor at Stanford Express Care Clinic, where a nurse urged her via teleconference to get tested. Four days later, she pulled up to Stanford Health Care’s drive-through Palo Alto clinic in her gray late-model Jeep. A nurse in head-to-toe protective gear stuck a giant swab—one in each nostril—and bagged up the samples to send to a university lab. Nearly a week later, she opened an email with the results: whatever plagued her, it wasn’t the novel coronavirus known as COVID-19.

An untold number of people in Santa Clara County sought medical help after experiencing signs that pointed to possible coronavirus transmission, only to be told that their circumstances didn’t warrant tests. One San Jose resident went to a Valley Med clinic with a sore throat and cough, and the examining doctor advised him to go home and drink tea with honey. “You should stay away from here,” he said, a cryptic reference to the infection’s presence, which staff at the county hospital were told not to discuss.

Others live with people who tested positive for the lung-throttling virus but never got diagnosed themselves. Caught off-guard without adequate plans to respond, the measures—or lack thereof— created a viral superhighway to transport COVID-19. And as it spread, a scarcity of tests, a fractured system of public labs and sequestered private counterparts with no legal obligation to fully disclose data left health officials struggling to map the scope of the outbreak.

As epidemiologists and public health officials try to make sense of result patterns to slow the spread of the coronavirus, they’re stumbling over show-stopping disparities in reported data. Some states and counties hide negative tests while others disclose them. Some monitor public labs but overlook results from companies and universities.

In California, specimens collected at doctor’s offices, clinics, hospitals and drive-throughs are sent to private labs with no obligation to notify local health departments that they’re running tests at all, let alone disclose the quality controls or timelines in place.

With no overarching strategy to define the outbreak’s scope, public health officials have had to fly blind in the face of a pandemic that threatens to hobble the nation’s hospital system and kill millions. “It would be much more effective from an epidemiological perspective to have an idea of what testing capacity looks like, to know more about the transmission,” Santa Clara County Executive Jeff Smith, a licensed physician, acknowledged in a recent phone interview. “But at this point, at a local level, we’re in a much more reactive mode than planning mode.”

That’s why, on Tuesday—after prodding from San Jose Inside about the lack of comprehensive data—seven Bay Area counties issued a public health order requiring all laboratories to disclose all positive, negative and inconclusive results to local authorities within an hour of receiving them. Though the regional stay-home order has slowed the spread of the virus compared to places that eschewed such drastic measures, as MSNBC host Rachel Maddow pointed out on her show the other day, local officials say the more they know, the more effective they can be.

And there’s still too much they don’t know.

“The scientific evidence shows that at this stage of the emergency, it is essential to slow virus transmission as much as possible to protect the most vulnerable and to prevent the health care system from being overwhelmed,” the directive states. “Accurate and precise diagnostic testing is an essential tool for combatting the spread of COVID-19.”

Yet the availability of accurate and precise data about testing varies wildly from state to state, according to a crowdsourcing effort called the COVID Tracking Project, and that can blur the full picture of what’s actually happening. As South Bay leaders prepared to step up data collection, a White House task force mirrored the move on a national scale.

On Sunday, the U.S Surgeon General’s Office tweeted: “Not all labs are reporting yet (or promptly), but the ones that do, report that 90 percent of tests (which are usually people exposed or w/symptoms) are #COVID19 negative. That means even among the highest risk people, most don’t have #coronavirus…”

In announcing what appears to be the first edict of its kind in the nation, Santa Clara County Public Health Officer Dr. Sara Cody emphasized how private entities can literally save lives by keeping local governments in the loop.“Commercial and academic laboratories are important partners in providing testing to our community,” she said. “Receiving this critical information from those labs will help local health departments respond to COVID-19 during this unprecedented time.”

Because in a pandemic, what we don’t know can hurt us.

Test Run

Dr. Cody wields sweeping emergency powers that make it a crime to play pickup basketball in a pandemic-related lockdown. But until now, she could do no more than beseech private labs for exhaustive data, which Quest Diagnostics and Stanford Health Care finally provided over the weekend (and which the county has yet to provide to us).

As the tally of confirmed cases reached 300,000 among South Korea’s population of 52 million, the United States reported 44,183 positives and a death toll of 544 on Tuesday as Santa Clara County’s ticked up to 400 and 16, respectively.

But until Monday, nine days after San Jose Inside began asking about negative test data, Santa Clara County’s Public Health Department kept those results secret. When it finally unveiled the numbers that evening, they came as a shock.

Just 647 of the county’s 2 million people had been tested. That few out of so many.

Smith says the county’s actual infected population is probably closer to 10,000, an estimate he shared publicly for the first time on Tuesday, rather than the official count of 302 announced two days earlier. With each coronavirus carrier statistically likely to pass it on to at least a few other people, he cautions, the outbreak is no doubt proliferating at a rate beyond what official test results suggest.

“If we had all of the negatives for the entire region, and we were doing testing basically on an as-requested basis so that anybody could get tested, whether they were sick or not,” Smith says, “then we could have some epidemiological data on how much the virus has entered the community.” Since a shortfall of tests makes that all but impossible, he says the next best option is to get the negatives from folks with symptoms or known exposure.

“We’re really trying to guess less,” says Cindy Chavez, president of Santa Clara County’s five-member Board of Supervisors.

The virus has already touched every single hospital in the South Bay, according to the county. And it’s already prompted the CDC to add 250 overflow beds in the Santa Clara Convention Center to brace for the influx of critically sick patients to the local healthcare system. With no way of measuring the extent of the infections, the county must act like it’s already fully encompassed.

“Initially, the focus was on trying to identify and mitigate the disease,” Smith says, “then we switched rapidly to community distancing and now the real issue is trying to prevent the health system from getting overwhelmed.”

Vince Tran balked at the revelation about the county’s low testing numbers. When his 67-year-old mother, Thu Tran, became one of the first few dozen South Bay residents to test positive for COVID-19 after a recent trip to Seattle and Kirkland, Washington, he says the county’s perfunctory contact tracing surprised him. As did Kaiser Permanente’s decision to refuse to test his dad, who fortunately has felt no ill effects yet.

“It’s clear now that the testing systems in place are a complete mess, and are the main reason why there’s so little information to make decisions with,” Tran says. The county’s admission about how little it knows, he adds, shows “the glaring disorganization between testing facilities and between public and private entities.”

With studies emerging about the role of asymptomatic people driving the exponential spread of the virus and reports about increasingly younger and healthier demographics succumbing to lung failure endemic to COVID-19, Tran says it’s more vital than ever for public officials to urge caution.

“That’s all another piece of the puzzle that we only get with more test data,” says Tran, who’s quarantined in his San Jose home with his wife and two young kids. “We can’t really know the magnitude of the problem if we don’t have more testing data. And it sounds like, based on what the county is saying, that they’ve basically had their hands tied this whole time. But still, they should have told us that sooner.”

San Jose Councilman-elect Matt Mahan, who repeatedly sounded the alarm about the shortage of robust test data this past week, applauded the county’s move toward transparency. “It’s a positive step,” he says, “but we shouldn’t be in this position. I’m concerned that we seem to be totally dependent on private testing companies and have not seen enough urgency—at all levels of government—around getting testing to scale.”

By expanding reporting requirements to include negative results, the new Bay Area-wide disclosure mandate will give the public a clearer picture about whether the growing case numbers indicate ramped-up diagnostic assays or the spread of the outbreak.

Doctor’s Orders

The evening before Dr. Cody unveiled her disclosure mandate, Betty Duong—who leads the county’s communications team after PR chief María Leticia Gómez tested positive for the coronavirus—sent a letter thanking San Jose Inside for questioning the paucity of data. “We are doing our best,” she wrote in a 2,000-word missive at Smith’s behest, “but realize the demand for detailed information on everything that is happening is understandably insatiable.”

Of course, the opacity comes from the top down. As has been thoroughly documented by investigative journalists in national news reports, President Donald Trump’s now-famously-botched response to the coronavirus as early as January put the whole nation behind the curve in preparing for the inevitable. The absence of testing, Duong wrote, has “hampered our ability to monitor the epidemic, to focus mitigation measures and to inform individual people of their infection status.”

Unfortunately, according to Duong, the county and state have “very little control over this situation” because most of the authority and resources needed for testing come from the U.S. Centers for Disease Control (CDC) and Prevention.

The CDC didn’t authorize the county to test until Feb. 26, already well over a month into the global outbreak, and the initial test kit didn’t even work. Though the CDC provided the reagents needed for accurate readings that same week, testing resources have yet to scale to what the county needs, public health officials say.

“The role of the local public health laboratory is limited: it serves as a specialty reference laboratory offering testing for emerging infections such as COVID-19 while other laboratory sectors (commercial and academic) come on-line to test for those new diseases,” Duong explained in her letter. “For example, at the beginning of the West Nile Virus epidemic, only public health laboratories were able to test for West Nile Virus, but West Nile Virus testing was very soon offered widely in the commercial sector. In the United States, unlike in some other countries, high-volume testing is done exclusively by commercial private sector labs.”

Santa Clara County’s public health lab can run up to 100 tests a day, officials say, and can only use resources provided by the CDC. With a critical shortfall, the county says it has to triage the highest-need patients.

“The lab is not structured, physically and otherwise, to scale to commercial-volume testing,” Duong says. “As a result, the current focus of the public health laboratory testing is to ensure that hospitalized patients get tested, as well as people who live or work in high-risk settings such as long-term care facilities, healthcare professionals and first responders, while we continue waiting for large-scale testing capacity to come on line through the commercial labs.”

The whole nation missed its chance to contain the virus, which puts the county—like its peers—on the defense. And the whole nation grapples with a shortage of swabs, vials and other tools needed to collect and test specimens.

“Because of limited testing capacity, the public health laboratory has focused its very limited testing capacity on testing patients with more severe illness and in high-risk, critical roles like healthcare workers and first responders,” according to Duong. “Because of this, and because we are not testing people without any symptoms, the number of cases that we detect through testing are only a small portion of the total number of people infected in the county. In addition, because we are primarily testing hospitalized patients, the cases we detect are more likely than the total number of infected persons to be seriously ill and are more likely to be hospitalized.”

That’s why Thu Tran’s husband—Vince Tran’s father—was never screened, even though he lives with a COVID-19-sickened wife. “He stays healthy,” Thu Tran says in a phone call from her Gilroy home, where she’s still bedridden and tethered to an oxygen tank.

But she says the dizzying nausea, gut-twisting pain and gasping breathlessness she experienced make her worry about passing it on to anyone else.

“Especially the people who have a health problem already,” Thu Tran cautions. “Because it’s a very, very strong virus. It multiples quickly and sticks to the air sacs in your lungs. You know? It’s a tough virus to fight.” 

For the Tran family, uncertainty about endangering others adds another layer of anxiety over concerns about the economy and prolonged physical isolation.

In the face of so many unknowns, Mahan says, the public needs frank, detailed communication from the experts. “Going forward, I’d hope to see frequent reports from the [county] detailing our testing goals, daily metrics, plans for scaling, barriers they’re working to break down, requests for public and private sector help, and so forth,” he says. “Transparency will only increase focus, speed, and results.

After all, understanding the present outbreak will prepare us for its inevitable return.

“We need to have a full scope of data to deal with this crisis,” Cruz says. “We need that Silicon Valley thinking, to go big, go bold and then scale it out because that’s what we do. This won’t be the last pandemic, so we should learn as much as we can from it.”