For many people in the U.S. who fear they’re already sick with covid-19, the past few weeks have been a confusing maze of bureaucracy and inadequacy, only to find out at the end that they won’t be able to get tested.
Washington state resident Jon, who asked that his last name not be used to protect his family’s privacy, told Gizmodo that his wife has been ill for close to a week with a fever, dry cough, and other flu-like symptoms.
And yet, according to Jon, they were told by the King County Novel Coronavirus call center and her primary care doctor that she was not immediately eligible for testing, not having traveled to a high-risk location where known outbreaks of the disease were spreading locally. She would need to either visit her doctor and rule out the flu first before she got any additional testing done, or visit the emergency room if her condition deteriorated, and possibly get tested there.
“She’s very sick, but strongly prefers to be cared for at home rather than go through that process,” Jon told Gizmodo.
Other people have told similar stories of being bounced around from call to call, told by health authorities either to stay home unless they’re severely sick or that there simply aren’t enough covid-19 tests. But these testing gaps have obscured what’s likely to be a reality in the near future: Most people with covid-19 in the U.S. will never be tested, and many people will never know whether they had the virus or not.
When the very first reported U.S. cases of covid-19 began showing up in February, public health officials and epidemiologists tried to do the sort of work that’s given them the unofficial moniker of “disease detectives.” A person’s positive test leads to a sweeping investigation of their recent whereabouts in an effort to trace back every possible person they may have exposed and potentially infected.
“We would want to get a very, very detailed understanding of all their movements that are relevant within the time period they were contagious. Then, for instance, if they were on an airplane, can we get the airplane manifest? If they were at a restaurant, can we figure out who else was there?” Anne Massey, a PhD student at the University of Washington School of Public Health, told Gizmodo. Massey is part of a team of students brought in to assist local public health officials with their early covid-19 investigation. (Massey did not conduct any of these interviews herself).
This type of investigation, known as contact tracing, is a critical public health tool for tracking and hopefully stopping the transmission of an outbreak early on, through monitoring and isolation of other cases. It’s often a meticulous exploration. A case study last week on the first known human-to-human covid-19 transmission in the U.S. mentioned that over 350 people connected to an infected husband and wife were found and tested.
Unfortunately, without enough tests available, contact tracing can’t work as well. While it’s possible that more available tests could have helped prevent covid-19 from spreading widely in the U.S. through more effective contact tracing, that point has become moot. The virus is now spreading widely in the U.S., and testing remains elusive for most people.
As of Tuesday afternoon, covid-19 has been found in every state except for West Virginia, though that’s probably only because that state has performed just 84 tests. New York and Washington state have now said that residents should assume they’ve been exposed to the virus, regardless of whether they are sick or know anyone who is sick. We’ve reached the tipping point where it’s become impossible to stop the outbreak.
When an epidemic is this widespread, it’s no longer a good use of resources to track the contacts of every single case, according to Janet Hamilton, director of science and policy at the Council of State and Territorial Epidemiologists, a nonprofit organization that represents many of the country’s epidemiologists and often collaborates with the Centers for Disease Control and Prevention. All we really can do is try to slow down the flow of new cases enough so that they don’t overwhelm our hospitals and health care workers.
“Mitigation is the right thing for us to be doing right now, because we’re no longer in a situation where we believe that we just have one or two cases. We actually believe that the virus is moving through the community, in which case, our surveillance strategy changes,” she told Gizmodo. “It’s less important to know about every single person than it is to have a good estimate, so that we can make really good evidence-based policy decisions.”
These surveillance strategies on a national level will look very close to how we track the flu and other common illnesses, according to Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials, which represents state and local public health agencies across the U.S.
Public and private testing labs, as well as clinical labs inside hospitals, will continue sending positive tests to local and state health departments, which will then send that data to the CDC. That’s how the CDC has been tallying the number of current reported cases in the country (over 4,000 as of March 16) so far. But these tests, even if and when they become available, will still be primarily given to people strongly suspected of having the virus, i.e., people who are already sick. This, of course, will not provide a true picture of how many people have the virus, since so many people appear to be infected without showing symptoms.
We’re also going to start seeing something called sentinel surveillance, where a random slice of people in emergency rooms and doctors’ offices who have flu-like symptoms across the country are screened for the coronavirus.
“Most people are in the emergency room because they’re ill. So it’s not like, here’s the prevalence of covid-19 in the general public, but the idea is to give us a better sense of how prevalent this is in the community,” Plescia told Gizmodo. From there, you can try to estimate how many people generally have the virus in the country, similar to how scientists estimate the prevalence of influenza every year.
We can rely on the same network of labs, emergency rooms, and hospitals used to track the flu to surveil covid-19. Indeed, the CDC has already activated some of these labs to sweep for covid-19, and there’s also the National Respiratory and Enteric Virus Surveillance System, which tracks other respiratory viruses, including the coronaviruses that cause the common cold.
This ideally means that we should be able to rapidly increase our surveillance once labs and hospitals have tests available. But there’s still no clear timeline on when that will happen. Another potential problem, according to Hamilton, is that it can be very difficult for these various entities to communicate with one another.
“Our current methods for sharing data are slow and cumbersome—paper records, phone calls, and faxes. To respond to this outbreak at the speed and intensity in which it requires, we need rapid data sharing from healthcare to public health,” she said.
The CDC’s surveillance system may also involve contributions from troubling private companies. In February, the Department of Health and Human Services and the CDC awarded $676,874 to Palantir Technologies—a company known for its controversial work with big data analytics—for “information technology software,” likely for its continued use of the company’s Foundry platform. Palantir has in the past helped the NSA spy on people, and more recently it’s helped ICE track down undocumented immigrants.
Neither Palantir nor the CDC has responded to requests for comment from Gizmodo regarding their relationship or whether Palantir will be involved in covid-19 surveillance.
Public health officials need to know how far covid-19 has spread in the U.S. That knowledge can help us know where to send valuable resources like ventilators for critically ill patients. And ideally, the country should be able to screen any and every person who could have covid-19. Just on Monday, the World Health Organization pleaded as much, with Director-General Tedros Adhanom Ghebreyesus stating, “All countries should be able to test all suspected cases. They cannot fight this pandemic blindfolded.”
But even countries outside of the U.S. have had difficulty gearing up their testing capabilities, and the U.S. doesn’t yet have blood tests that can easily screen the population for the virus by looking for specific antibodies, which can indicate whether a recovered person previously had the virus (the CDC has said it’s working on creating such tests). Right now, nose and throat swab tests can only be used to confirm an active infection. So for the foreseeable future, testing in the U.S. will be focused on people who seem sick—which, unfortunately, means we all must assume we have been exposed to the virus and maintain social distancing.
We know that covid-19 is here and that it’s not going away any time soon. While most victims don’t develop a life-threatening case, they can still spread it to others who are much more vulnerable, such as elderly people or people who are immunocompromised. So what we need to do to mitigate harm would be the same whether there are 500 or 5,000 cases currently in our neighborhood.
“Because we know that there is community spread, it really starts to make this more of a response that everybody is responsible for,” Plescia said. “It’s valuable to be tested, because you can find out if it really is the coronavirus or something else. But right now, even if you find out you’ve only just got a cold, you really still should stay home. Because otherwise you’re going to get somebody else sick, and they’re going to worry if they’ve got the coronavirus.”
New research has also indicated that not only can people without symptoms spread the disease, but we might actually be most contagious right before we become sick. In other words, simply feeling healthy and avoiding sick people isn’t a guarantee that you won’t catch or spread the virus. For now, the only thing to do is to stay home as much as possible in order to slow the spread of infections.