lab vial with blood

Chimére L. Smith, a Baltimore schoolteacher, is an expert on the Covid testing vacuum.

Smith, 38, got Covid last March, but never had a positive test. Emergency rooms and doctors dismissed her without effective treatment multiple times. She’s still ill, experiencing occipital neuralgia, fibromyalgia, mild cognitive impairment, brain fog, severe joint pain, gastrointestinal issues, memory loss and dizziness, among other symptoms. While her experiences then and now fall squarely into the Covid experience, she never got a positive test, and was told repeatedly that she simply did not have Covid. We wrote about her journey here.

Then, recently, she got a positive diagnosis from her doctor, but another doctor refused to accept it, and wrote in her chart that she “believes she had Covid,” she said. And she was rejected from a National Institutes of Health study for lack of a positive test. “I wanted them to study how this has impacted my brain as a black woman,” she said in a video interview. “I know that the demographics of these studies show that they’re not studying black people. It makes me upset that I can’t be a part of that study, because I would have loved to have documented my experience.”

woman wearing mask
Chimere L. Smith

Hundreds of thousands of Covid patients never got a positive test. Early on, tests were hard to get, and inconclusive in many cases. While tests are more readily available now, they are still not completely accurate, delivering negative results to many people who believe they have Covid. And even now the downstream problems of the testing “black hole” continue.

Many people who believe they have (or had) Covid, then, are living with uncertainty — even if their symptoms and the timing seem to conclusively prove that they had it. Medical bills related to Covid are supposed to be covered under federal legislation, but the absence of a test may mean that they aren’t covered. Many post-Covid clinics require a positive Covid test of all patients — so if you don’t have one, you can’t get in. Disability rules vary from company to company and state to state — but in general, Covid is not always, or even often, considered a disability. And if you didn’t get a positive test, you’re out of luck.

To make matters worse, many Americans still refuse to believe that long Covid exists, and insist that the absence of a positive test means that the person in question is faking illness. Some of these people are spouses, parents, community members, and, yes, medical professionals.

‘It’s ridiculous’

Amanda Finley, who leads the Facebook support group and nonprofit Covid-19 Long-Haulers Discussion Group, is a long-hauler herself, having caught the illness twice. She first got sick March 6, in Kansas City, but wasn’t tested, because “we didn’t have testing available in Kansas City until March 26. And even then, they wouldn’t have tested me anyhow because my fever was never high enough,” she said in a video interview.

woman and child smiling
Amanda Finley (left) and her son

The second time she caught Covid, she said, was in October, “when I had a positive test — I feel like I could hold up this piece of paper that said, ‘See, do you believe me now?’ It’s ridiculous.”

“The biggest impact is that if we don’t have a positive test, we can’t access the long Covid clinics that are popping up,” said Finley, an archeologist. “We’re demanding these clinics, and we need these clinics. But most of them won’t accept us without a positive test. Part of that is because they receive federal funding, and there’s a federal mandate stating that there has to be a positive test. So it’s not always on them. But it’s very hard to get into a clinic if you didn’t have a positive test.”

Patients are hurt in many ways, she said. “Their bills are not covered. They look for specialists, and all they encounter is gaslighting. ‘Oh, you didn’t have Covid, you tested negative or you never had a test to prove it.’

“And it’s not just from providers it’s from your family and friends also, ‘Well, you didn’t have Covid. How do you know you’ve had Covid? I’ve heard that a lot.”

Tests reserved for health care workers

In the early going, the few tests available were reserved for health care workers and people who really needed them. (By the way, we talked to a number of health care workers in the New York area, the epicenter of the early pandemic, who couldn’t get tested then.) But now that the tests are available, why is there such a problem with accuracy? They’re more accurate on the whole than they were before, but still? Scientists point out that there are many spots where a test could go awry:

  • The test sample wasn’t collected properly (the swab didn’t go far enough up the nose)
  • The sample wasn’t stored properly en route to the lab
  • The underlying technology was wrong — either it wanted a higher level of virus samples than one would normally have at a certain point in the infection, or it was a “rapid” test, which is generally less accurate (see the details about accuracy in this AARP article)
  • The sample was taken too early — for some tests, accuracy is better if the test comes when the person has symptoms, though many Covid patients are asymptomatic early in their infection (and some throughout), and many people will rush to get tested immediately if they feel they’ve been exposed
  • The sample was taken too late
  • The test was not exhaustively assessed in the “Emergency Use Authorization” procedure under the Food and Drug Administration guidelines, which have been fairly loose during much of the pandemic (we wrote about this here)

So for many people, if they couldn’t get a test, they either never got a positive diagnosis, or perhaps, like Smith, months later someone decided they probably had it and put “presumed Covid” somewhere in their medical records.

Finley spoke of one of her group members who first got ill in September. “She wasn’t able to get a test or she just she tested negative, but it was Covid,” she said. “Months later, she still has residual symptoms. We’ve finally found a clinic that might take her because they don’t have that requirement for a test. But her primary care physician does not believe her. He has been telling her it’s just anxiety. She’s been going from specialist to specialist and nobody will help her because she doesn’t have that positive test in her history.”

Bills remain unpaid

Donna Zelazny, 49, from Springboro, Ohio, had a positive test in June 2020, but she still has some outstanding bills that have not been covered by insurance or by the hospital or doctor treating her.

Zelazny, who first came down with Covid in March 2020, was reinfected in late June. She has had one emergency room visit and several visits to doctors, including a cardiologist who was skeptical of her diagnosis.

The emergency room bill for the doctor, for $1,384, seems to have been properly coded and paid by the insurer, she said by email — but the hospital emergency room bill of $9,077.75, with her responsibility at $1,878.80, has not been covered by the insurer, despite her repeated requests.

Beyond that, her cardiologist has resisted applying a Covid code to several hundred dollars worth of her bills, she wrote. “The Cardiology related bills (which include office visits, an echo, and a stress test, along with the charges from the doctors reading the tests) still haven’t been paid completely by insurance” she wrote.
“I did have a positive test, but the Cardiologist chose to bill as something else because she hadn’t heard of long Covid and didn’t believe my issues could be related.”

Eventually, after months of refusing, the cardiologist said she would correct them and recode them properly and re-submit, Zelazny said. “I just got off the phone with BC/BS a few minutes ago and they said that the bills were resubmitted, but the diagnosis code for Covid still doesn’t appear anywhere on the new submissions,” she said.

Unable to get a test

Jeanette Deschenes, who works at a hospital system in the Midwest, got sick after she had contact with a patient who traveled to New York City in early March 2020. Her symptoms began March 19, and she tested on March 20, but the results were negative. Under the retesting guidelines for patients with symptoms, she was unable to be retested at work,  and eventually went out of network seven weeks later; the results were negative again. “My first clinical diagnosis of Covid-19 came from Northwestern Medicine’s post-Covid clinic in January 2021 based on symptoms and exposure,” she wrote in an email.

She thought she was getting better. But now her symptoms are much worse than they were originally. She has deep fatigue, post-exertion malaise and heart issues including tachycardia — when she walked her dog around the block, her heart rate zoomed up to 212 beats per minute. She has had fainting spells, and also struggles cognitively; after a webinar series, she was so exhausted she went to bed.

She said the long-hauler clinic in Chicago assessed her, and marked her “at 40 percent.” “That was my baseline, I don’t know how they figured that out,” she said. Her initial neuropsychological tests were extremely upsetting, she said. “During that neurology visit, I got off that call the Zoom video and I cried. Turns out I have one-quarter memory recall. Wow. It’s a moderate cognitive dysfunction listed in my after-visit summary. Memory loss. I didn’t realize I was that bad. You just muddle through, you just keep going.”

She has a disability claim at her hospital that has been pending since February with no action.

Research excludes those without a positive test

David Putrino, an assistant professor of rehabilitation medicine at Mount Sinai Health Systems in New York, works with post-Covid patients at Mount Sinai’s Center for Post-Covid Care in New York City. He pointed to another effect in a webinar for the Association of Health Care Journalists (when?).

He did a webinar with the University of Southern California Annenberg Center in early April in which he mentioned a conversation with a journal about a paper he had done that was not being published. He said the sticking point was that he had included data about 1) patients who tested positive for Covid and 2) patients who did not test positive.

He said one reviewer had objected to the paper because of the inclusion of patients who did not test positive, adding that anyone who wanted a test in the United States could get a test.

I followed up with him via Mount Sinai media relations to ask what the journal was, what is the status of the paper, and how prevalent is the view that a positive test needs to be present for a patient to be deemed a Covid patient — as opposed to judging based on symptoms, timing, illness trajectory and so on.

The response from Ilana Nikravesh at the Mount Sinai media relations office was, “This is an incredibly busy time for Dr. Putrino and unfortunately he doesn’t have the bandwidth to help. Sorry we cannot accommodate this time.”

It’s also worth noting here that patients must have a positive test to get into the Mount Sinai Center for Post-Covid Care.

Patient-led research

To combat this, the group that Finley leads and other patient-led groups have decided to do their own research, using results from both patients with positive tests and patients without.

Another peer-to-peer support group, Body Politic, has an online group on the Slack platform where patients share information and resources. Body Politic has partnered with Indiana University on research like this study.

A group of Body Politic and other researchers has put together a Patient-Led Research Collaborative on Long Covid to address the lack of good studies.

The patient-led research has brought international recognition to both groups. The National Health Service in Britain, the World Health Organization and the National Institutes of Health have all recognized the value of this research — often noting that those who lacked a positive test were quite clearly Covid survivors.

No positive results, and so she lost friends

K., 22, lives in a small Texas city and spoke about her experience lacking a test on the condition that we identify her this way.

She first got sick in July 2020, but never tested positive although people around her had Covid and were testing positive. “It came out negative,” she said. “But I had all the symptoms. And because of that no one thought that I had Covid even though I was sick.” She spent months without a diagnosis, with friends and family refusing to believe she had Covid.

She’s still suffering from shortness of breath and extreme fatigue. She has had trouble finding doctors. “At the PCP office, they wanted to diagnose me with depression,” she said. “I was just thinking, I can barely talk. I’m short of breath. I had to use my inhaler while I was there in the office. And even then, they were still mentioning depression. It’s dumb, because how can depression cause you to be short of breath and exhausted?”

She has had to switch doctors, and is still struggling to get access to good primary cqre. Meanwhile, she said, “It feels like my own body has turned against me.”

If there is a bright spot, she found out two months ago that a doctor had put a diagnosis of Covid into her chart while ordering a test. But K. was never told about this, and so it was a complete surprise — she noticed it when she glanced at the paperwork while helping her mother do taxes.

Meanwhile, though, many people around her refuse to believe she had Covid, she said.

“Ever since I got Covid, no one believes me,” she said. “The people around me, my own family doctors. I even I almost lost friends over it. It’s really crazy. This is pretty much the worst experience ever. I honestly don’t even know how I’m alive right now, considering everything that’s happened. But I guess I will continue to fight, and try to do my best because, you know, there’s really nothing else I can do.”

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...