I am an epidemiologist with COVID-19 and I want to be counted

Editor’s note: This piece has been updated with current case counts.

I am an epidemiologist who is home sick with COVID-19. Upon a positive self-test, I contacted my primary care physician to ask about treatment and report my case. As my symptoms worsened and more of my family members tested positive on a self-test, I turned to the Centers for Disease Control and Prevention (CDC) to find out how to report our cases. CDC guidance suggests that I tell my health care provider that I have tested positive, but the health care system has no means of reporting self-tests for COVID-19 surveillance. I cannot report the cases of COVID-19 in my family and we, like so many Americans suffering during this current wave, will go uncounted.

U.S. policy dictates that COVID-19 surveillance is solely reliant on laboratory testing. This surveillance system is no longer functioning as a tool to mitigate the spread of SARS-CoV2 with the ubiquitous availability and use of self-testing. With the availability of tests in pharmacies and every household able to obtain eight free tests, the surveillance system must adapt to the way most people are finding out whether or not they have contracted SARS-CoV2. The current surveillance system was designed for earlier waves of the pandemic when most cases were being detected by PCR in a clinical setting or a mass testing site. Monitoring laboratory tests alone does not give us an accurate and early detection of when cases are rising. Monitoring hospitalized cases will not allow us to plan for current wave leaving health care systems vulnerable to staff shortages.

The roughly 100,000 cases reported in the New York Times this week, vastly undercount the number of Americans who are sick with COVID-19, including me. If we, as a country, can develop the first and most effective vaccines to prevent COVID-19-related hospitalizations and death, why is there no political will to develop a surveillance system that can quickly and accurately record new cases of COVID-19? We are in the midst of another wave without an accurate count of how many people currently have COVID-19 and where cases are increasing.

An ideal surveillance tool would contain both active components, like universal testing the national wastewater surveillance system for SARS-CoV-2, and passive reporting of cases from self-testing, in addition to reporting through laboratory testing. Those who test positive on a self-test should be able to easily and conveniently report their positive test, recording data that is comparable to the data that is reported with a positive laboratory test. All results could be integrated into a single national surveillance system to allow for a clear and current snapshot of the burden of COVID-19 by geographic region. Data on the frequency of cases by date and geographic location from this surveillance system should be readily accessible to the public as well as policy makers and added to our public health armament.

Relying on surveillance tools that were developed during outdated testing paradigms will not be sufficient for individuals to weigh the risks and benefits given the current burden of SARS-CoV-2 in their community or for health care systems to prepare for future waves. Our surveillance systems can and must adapt to the current realities of the COVID-19 pandemic. I am an epidemiologist with COVID-19 and want to be counted.

Dr. Mara McAdams-DeMarco is an epidemiologist with 20 years of experience in public health and is studying how COVID-19 mitigation strategies have impacted vulnerable populations. She is an associate professor of surgery and population health and the associate vice chair of research in the Department of Surgery at New York University Grossman School of Medicine. Follow her on Twitter: @McAdamsDeMarco