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.