How the lack of coronavirus testing impacts primary care

My first possible COVID-19 case came nearly three weeks ago, before there were any cases in our city. He was a healthcare professional who presented with fever, sore throat, and cough. We did the usual strep and influenza testing, both negative, but I thought that he looked different. He had some diarrhea, stomach pain, and a different look to his face that I couldn’t place.

“You might have it,” I said. “You might have coronavirus.”

He looked at me nervously, obviously having thought the same thing. “Is there anything I can do about it? Can you test me?”

No, there were no tests anywhere at that point. Few states had access to any testing, so I knew all we could do was to wait. I sent him home and told him to go to the hospital if he developed shortness of breath, and that we’d get him tested as soon as possible. That seemed to be a short time, as my nurses contacted the national lab we work with, and they told us that collection kits for COVID-19 were “on the way” and would get to us in 1 to 4 days. Perfect.

That was the start of a long odyssey of growing frustration, helplessness, and anger at the testing for this deadly disease. Those kits never showed up. By the time we had local access to testing, the patient had gotten completely better and was asking to go back to work. He works around very vulnerable patients, and we told him to let his employer know about my suspicions and to get him tested. We never heard anything.

Of course, since then, every cough has been a worry to my patients. Fevers are watched with dread. We have been directing people to contact our local academic hospital to be triaged for COVID-19 testing. A couple of them have been accepted; none has tested positive. Some of them have seemed suspicious to me, but the lack of adequate testing has the triage center restricting tests to the very vulnerable or the obviously sick.

Yet I wondered about myself, having come in close contact with that first patient, if I have been spreading the virus to those around me. Around 80 percent of those infected are asymptomatic, so my lack of symptoms said nothing. This fear is what pushed us to severely limit the number of patients coming into our office building. We give care via text messages, phone calls, and video conferencing. My nurses check vitals and draw blood on our front porch (thankfully, the weather here has been kind), and we even set up a tent out back to see and examine patients who needed hands-on care. Of course, anyone with a fever, cough, or other suspicious symptoms are kept away and referred to the triage service. Those people who are particularly vulnerable to the virus are also kept away if at all possible.

We are doing our best, but we are working blindly.

This came into even more focus this past week when my sweet lady got sick. She started with a dry cough, but the pollen is rampant this time of year, so we both assumed that was the cause. Then she got a fever, and her cough got worse … and so again, I wondered about doing testing. She called the triage service, and they said she was a candidate for testing! So we went on Friday morning and had her nose swabbed by very friendly PPE encased nurses. We were told that the result would be back in 3-4 days, and to quarantine until the results came back. That’s not a bad thing to do together, and we enjoyed movies and delivery meals over the weekend. She had more fever, lost her sense of smell, her cough deepened, and she got very fatigued, but never got to the point that I was worried about her immediate health. Those symptoms have since lessened, and have now mostly subsided, but predictably, we still have no answer.

To make things even more difficult, there’s the issue of false-negative test results. Apparently, many people are being told that there’s a 10-30 percent false-negative rate for the test she got. So what do we do if the result comes back negative? Do I trust a test which has a significant chance of error, when the result not only matters to her health, but to any patient, staff person, friend, or family member I come in contact with? She had nearly all of the symptoms we look for, so her pre-test probability is higher than most. If this is not coronavirus, it’s a coronavirus-like syndrome.

And so the frustration over test blindness continues. How can we treat and respond to something that is so difficult to identify or rule-out? And how can I know I am not endangering patients by simply bringing them into my office building? I called the triage line today and explained my situation, wondering if I should get tested to see if I was a risk to others. No, I was told, the recommendation for clinicians exposed to the virus is to simply wear a mask and go about business normally. I knew the answer wasn’t satisfying, as did the doctor on the triage app. It would be really nice to know my status after having been in close contact with a highly suspicious case. But they won’t do it.

I realize that my struggles are nowhere near those of the emergency or hospital-based medical staff, the people really on the battlefront. My struggles are not even that of the average PCP who has lost significant income by encouraging social distancing. My practice adjusted easily to virtual visits, to remote care, and our patients, if anything, have become even more loyal to the direct care we give. But how can I give good care; how can I protect my people when I can’t find out what is going on?

As a PCP, my world boils down to the person I am giving care to. How can I help this one person the most? How can I address their fear of spreading the disease to their loved ones? How do I know I won’t give that disease to them if I see them? The disease is spreading because of this blindness. People are being hurt and even killed because we don’t have good testing.