covid-19 testing illustration

Earlier this fall, the predominantly Hasidic village of Kiryas Joel, N.Y., managed to drop its positive Covid test rate from 34.2% in the last week of September, to a shocking 4.2% just one month later, the Jewish-American news organization The Forward reported.

According to The Forward, town leaders and Gov. Andrew Cuomo of New York attribute this decline to harsher restrictions being put in place after the village was declared a Covid “red zone” in early October.

But the Orange County health commissioner, Dr. Irina Gelman, said she believes rates dropped among the town’s 26,000 residents because people have been refusing to get tested.

A natural decline in the positivity rate, Dr. Gelman told The Forward, would take place more gradually, over a longer period of time. Furthermore, data shows that testing rates in Orange County, where Kiryas Joel is located, declined in October, even as hospitalizations rose — a sure sign that people are still getting ill with Covid, and, in fact, that infection rates may be rising.

As the pandemic wears on, there are more and more reports of people in communities all across the country refusing to get tested — or to disclose their results — for a variety of potential reasons. President Donald J. Trump has refused to disclose his testing regimen, including when he last tested negative before his positive test this fall, leading scientists to suggest that the wave of infections in the White House and the Trump campaign was seeded by lax behavior.

Also not getting tested or not disclosing their results are Iowa high school athletes, Chicago suburbanites, motorcycle enthusiasts, employees at various businesses and others. This practice contravenes long-standing, recommended protocols to curb the spread of the virus — such as contact tracing, mask-wearing, limiting social interactions and widespread testing.

Gaming health data to push back restrictions

It’s hard to find people owning up to not testing, but one documented case is in New York City. If enough members of a community decided to not get tested for Covid, they could successfully make it appear as if positive cases were declining, and thus allow the community to push back restrictions in a place like New York, where restrictions are based on percentages of positive testing.

The Forward reported that, in Borough Park in Brooklyn, home to another Orthodox Jewish community, residents received a Yiddish robocall telling them, “even if they force you, even if they beat you like the Jews in Israel, and especially not voluntarily … one must not go get tested because this raises the statistics in our neighborhoods.”

According to the New York Times, yeshiva parents in Brooklyn’s Orthodox Jewish community also circulated a message on WhatsApp encouraging parents to not get their children tested. If their children were sick, the message said, parents should report that the children were ill with a stomachache or other symptom less typically associated with Covid. Acknowledging that a child was ill with Covid might cause the community’s schools to close, the message warned, and it was “up to the parents” to ensure that this did not happen.

Orthodox communities have felt unfairly persecuted and mistreated since the early stages of the pandemic, and have been very vocal about their views. Spikes of Covid cases in Orthodox communities in the spring caused waves of criticism and antisemitism that left many community members feeling incensed.

In September and October, as Covid cases were once again high in Orthodox communities, community members felt attacked by harsh restrictions.

“The Jewish community feels they’re being singled out and there’s some element of anti-Semitism,” The Jewish Voice publisher, David Ben Hooran, told NBC New York. “Not that I agree with it, but that’s the sentiment in the street. Tensions are running high.”

Politicization of testing

The general politicization of the coronavirus pandemic has also led to a reluctance to test. There has been a lot of news coverage, for example, of the motorcycle rally in Sturgis, S.D., in August, which has been characterized as a superspreader event — having, as it did, thousands of motorcyclists from around the nation gathering, many maskless, in a state where the virus was surging. The New York Times described it as “460,000 bikers for a motorcycle rally shaping up to be a Woodstock of unmasked, uninhibited coronavirus defiance.”

In the aftermath, people got sick but didn’t get tested. “Heidi Morgan, a conservative Republican who lives in the Black Hills, said some friends from Nebraska who attended Sturgis got sick after returning home. They refused to get tested out of a belief that the rally’s opponents wanted to use higher infection numbers as a political weapon,” The Times wrote.

“‘There’s that feeling of, ‘We’re not going to add to the numbers,’” said Ms. Morgan, who said her family had taken the pandemic seriously, guided by their Baptist faith in putting others’ welfare first. “I’m trying to convince them that’s not true.””

Community stigma

Some people may avoid getting tested for Covid for fear of community stigma if they test positive.

“Social stigma in the context of health is the negative association between a person or group of people who share certain characteristics and a specific disease,” the World Health Organization (WHO) wrote in a piece about social stigma associated with COVID-19. “In an outbreak, this may mean people are labelled, stereotyped, discriminated against, treated separately, and/or experience loss of status because of a perceived link with a disease….The current COVID-19 outbreak has provoked social stigma and discriminatory behaviours against people of certain ethnic backgrounds as well as anyone perceived to have been in contact with the virus.”

Stigma, the WHO said, can lead people to hide their illness to avoid discrimination, prevent them from seeking immediate healthcare, and discourage them from adopting healthy behaviors.

On an individual level, stigma may lead people to hide their illness, and to avoid testing or medical treatment to further conceal the fact that they are ill.

“[People] are just not talking about it,” said Margot Everitt of Indianapolis, Ind,. in a video interview with ClearHealthCosts in October. Everitt’s 12-year-old son had been ill with Covid since March, and Everitt said she did not talk about it either at first, only sharing the news of her son’s illness with close family and friends and with her son’s school.

Everitt said that when she saw President Trump tweet about how Covid was not a big deal, she got upset and posted about her son’s illness publicly on Facebook. The response she received, she said, was overwhelmingly positive, but many people in her position may have been too afraid to share the news, for fear of community backlash.

Jessica Thomas’s entire family became ill with Covid this summer in Park Ridge, Ill. “I was very, very reluctant to share that we were positive,” she said in a video interview with ClearHealthCosts in the fall. “There definitely is a social stigma around testing positive…. I know lots of people who are friends of mine, whose children have tested positive, and they have never said a word about it. They don’t want anyone to know. The only reason that I know is because I was more vocal, and they reached out to me with questions or for resources.

“I also think there’s just so much fear around it,” Thomas said. “Some people just avoid thinking about it, because the anxiety is just too much to take on. And so there’s a denial there. But the politics around it, unfortunately, have become so loaded that people don’t want to even accept a position on it either way…I did finally post something on social media about all of us being positive, and how adversely it affected people in our family…And [there was] so little engagement overall, it was almost like people just didn’t acknowledge it or didn’t want to engage with it. So I can’t quite decide where that comes from. If it comes from a place of shaming, or if it comes from a place of…their own anxiety around the pandemic. I haven’t quite figured it out. But I absolutely think there’s definitely a lot of public shaming still around.”

States where leadership has not encouraged testing

In some parts of the United States, governors who were left to their own devices to compose a Covid policy did not encourage lockdowns, mask-wearing and widespread testing — while the virus surged.

In Iowa, for example, Gov. Kim Reynolds said early in the pandemic that she trusted “Iowans would do the right thing,” rather than establishing a serious and severe set of state-wide, evidence-based protocols as Governor Cuomo did in New York.

Reynolds did institute a testing program, with a no-bid sweetheart contract, that was found to have multiple problems, including lost tests, delayed results, inaccurate results and difficulty accessing the system. Now, months later, Iowa’s case rates are skyrocketing. And on Tuesday, Nov. 10, Reynolds issued a mandate requiring masks at many public gatherings, The Des Moines Register reported.

In addition to the sketchy nature of the testing program there, the state’s data, as reported on a state web site, has been squishy and conflicting. This led a local data scientist, Sara Anne Willette, to start analyzing the state’s data and posting it on her Facebook page, documenting school infection rates that are not reported by the state. The Cedar Rapids Gazette ran a story about her calling her “the rogue analyst fact-checking Iowa’s pandemic math.”

The conversation on her Facebook page includes comments like this one: “parents/students being unwilling to admit to mild symptoms or exposures because they don’t want to lose childcare or sports opportunities (this straight from my sister who teaches HS in rural IA and says there’s huge incentive for students to not get tested so as to not lose their eligibility to play), so do we really know what cases are coming from schools?”

Avoiding testing to keep a job

In some cases, a person might avoid testing in order to maintain a job or income. In most workplaces, a person who tests positive for Covid will be required to take a certain amount of time off from work to quarantine — typically two weeks, as recommended by the CDC.

Although the Families First Coronavirus Response Act passed by Congress in March mandated that workers be given two weeks of paid sick leave if they needed to quarantine or recover from Covid, companies with more than 500 or fewer than 50 employees could be exempted. This leaves out a significant amount of people.

“I’m still going to be honest,” a Minnesota nurse, Megan Murphy, told the Star Tribune, regarding being upfront about potential symptoms and test results. “But my concern is, what happens when people can’t afford to have days unpaid, and they no longer acknowledge that they have symptoms or have been exposed because they can’t afford to miss work?”

There have even been some cases of employees being fired after testing positive and taking time off work, which is not technically legal.

“The last thing we understood was that it was ok we were not coming in, that we were going to shelter in place for the shelter in place order and then suddenly that turned not ok,” Willie Adams of Memphis, Tenn., who worked for an exercise equipment delivery company called Exercise Unlimited, told Local Memphis ABC News. He and his brother-in-law, who worked for the same company, were fired for “job abandonment” while quarantining.

Testing is invasive, uncomfortable and painful

Yet another reason why people may avoid testing is the fact that the most common testing procedure — the nasopharyngeal swab or nasal swab — is extremely uncomfortable. In response to the commonly-asked question, “is the COVID-19 test painful?” WebMD writes that the test “won’t hurt, but it might be uncomfortable.”

Having a long swab inserted far into your nostril feels invasive at best, and many people experience involuntary tearing and sneezing in response.

While some people might find the test simply uncomfortable, others (including the author of this piece) find the test excruciatingly painful. According to Medium’s science-based publication, Elemental, nerve endings within the nose are very close to the surface of the skin, and thus extremely sensitive.

Furthermore, the test itself is difficult to perform correctly. According to Elemental, the swab should be aimed towards the ear canal upon insertion, rather than towards the eyeball as many people believe. Inserting the swab straight up towards the eyeball can be a cause for pain.

“Parents don’t want to put their kids through the testing,” Everitt told ClearHealthCosts. “That’s what the bottom line is…They’ve heard horror stories, or they’ve experienced it themselves. It’s really horrible. I can relate. I mean, it was not pleasant for my son. But at least now we know. But parents aren’t doing that.”

Tests are unreliable, adding to the reluctance

In addition to being uncomfortable, available Covid tests — particularly the rapid tests — have been unreliable, no doubt leading some to not take them seriously. According to Harvard Health Publishing, “the accuracy of any diagnostic test depends on many factors, including whether the sample was collected properly, when during the course of illness the testing was done, and whether the sample was maintained in appropriate conditions while it was shipped to the laboratory.”

Positive tests, Harvard Health says, are fairly likely to be accurate, while negative tests have a higher chance of being incorrect. A false negative test could be particularly dangerous, potentially leading an infected person to believe they are healthy, not properly quarantine, and infect others.

Despite the complications, scientists agree that testing is a linchpin of any strategy to deal with Covid.

“Testing is essential to confirm infection in cases and contacts, guide patient care, inform our understanding of transmission dynamics, prepare the health system for case surges, and inform the level of economic activity consistent with public health goals for limiting SARS-CoV-2 transmission,” the Center for Infectious Disease Research and Policy at the University of Minnesota wrote in a paper on the topic.

Jeanne Pinder

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...

Phoebe Pinder

Phoebe Pinder is a videographer and content creator at Per Scholas, a tech education nonprofit dedicated to advancing economic equity...