Immunosuppressed and Stressed: Navigating COVID-19 as a High-Risk Scientist

Oct. 9, 2020

As a health educator with a background in clinical microbiology, I was familiar with disease, but it was not until February 2020 — when I received my own Behcet’s diagnosis — that I truly understood what it was like to live with one. Behcet’s disease is a rare autoimmune disorder that causes blood vessel inflammation throughout the body. For the first few months, I struggled to navigate my new diagnosis and begin immunosuppressive therapy, but the coronavirus pandemic soon brought additional challenges.

My diagnosis provided some relief after years of searching for answers, but that relief was overshadowed by unknowns. For example, I read that uveitis associated with the disease can lead to vision loss. As a microbiologist, I had built my career on being able to see tiny organisms, distinguish bacterial colony types based on minute details and identify microscopic parasites hiding among heaps of insignificant debris. I was already fearful of what was to come; the emerging COVID-19 pandemic only added to my distress.

Effectively overnight, my kitchen table became a makeshift office space and, over the summer, my department at the University of Arkansas for Medical Sciences prepared for the safe return of students to our laboratories. We met with infectious disease professionals, reviewed evolving guidelines and modified our entire workflow. Our greatest concern was safely delivering face-to-face laboratory courses, but the thought of resuming in-person instruction ultimately prompted me to research safety guidelines specific to health care personnel and educators on immunosuppressive therapy. I found numerous guidelines for immunosuppressed patients, but they rarely — if ever —specifically addressed increased-risk individuals working in health care, research or education.

Autoimmune diseases affect an estimated 14-22 million people in the United States, according to the Centers for Disease Control and Prevention (CDC). Women are disproportionally affected: 78% of patients are female. Symptoms common to many autoimmune diseases range from fever and fatigue to joint swelling, weakness and chronic pain. Stress can be a major trigger for many with autoimmune diseases, so it’s not hard to imagine how the current pandemic is affecting those with a diagnosis.

The Risks of COVID-19 for the Immunocompromised

While many autoimmune symptoms can be treated, patients accept the trade-off of fewer flares ups for the increased risks associated with taking immunosuppressant medication. There are several different classes of immunosuppressants with different mechanisms of action, but they all work to reduce or stop the body’s immune response. CDC warns that individuals with weakened immune systems (from cancer, genetic immune deficiencies, organ transplant, HIV or certain medications) are at increased risk of severe illness if infected with SARS-CoV-2.

On the Front Lines of a Pandemic

Laboratory and other healthcare workers are on the front lines working to control the pandemic by collecting specimens for SARS-CoV-2 testing, performing the testing or caring for patients with confirmed COVID-19. The Occupational Safety and Health Administration (OSHA) categorizes collecting or handling specimens from suspected or known COVID-19 patients in the “very high” risk category. This category extends to performing aerosol-generating procedures on those specimens, such as pipetting or mixing tubes.

CDC’s Biosafety for Microbiological and Biomedical Laboratories (BMBL) specifies personal protective equipment (PPE) required to work with infectious specimens in a laboratory setting, but the recent PPE shortage has forced countless front-line professionals to sidestep these guidelines in response. Reusing PPE and inadequate PPE while caring for patients with COVID-19 has been associated with increased risk compared to those who reported adequate PPE. Coronavirus is not the only threat: without sufficient PPE, front-line professionals are vulnerable to other infectious diseases and have greater probability of spreading infections.

COVID-19 Guidance for Health Professionals

Current literature on safety for front-line healthcare workers and educators taking immunosuppressive medication is scarce and often contradictory. The most robust guidance includes:
  1. CDC’s BMBL states all laboratory personnel must be supplied with information about potentially infectious materials they are working with. The guideline encourages anyone with conditions that may put them at increased risk to self-identify and seek guidance from a healthcare provider.
  2. The American College of Emergency Physicians’ COVID-19 Field Guide suggests patients on immunosuppressive therapy may not be at higher risk for severe respiratory illness if they contract COVID-19. However, these patients may be at increased risk for other serious symptoms with fever that develop over time. The Field Guide recommends closer follow-up care for immunosuppressed patients over a longer period.
  3. One research team at Johns Hopkins led by gastroenterologist Dr. Brindusa Truta admits it is not yet clear how patients on immunosuppressant medications are affected in terms of risk factors and severity of illness. The team is currently collecting data from 3,000 patients with inflammatory bowel disease. While preliminary information does not show increased infections or poorer outcomes for these patients, this could change over time.
  4. Dr. Betty Diamond, Chair of the American Autoimmune Related Diseases Association, Inc. Scientific Advisory Board, says it is a certainty that patients on immunosuppressant medications are at increased risk for infections. She recommends that these patients contact their provider if they experience cough, fatigue or any difficulty breathing whether they have a fever or not.
This small sample of information demonstrates how patients with autoimmune disease or those who are otherwise immunocompromised might be left feeling anxious and confused. Not to mention the lack of specific guidance for those of us working directly with patients, patients specimens or in research settings. When I asked how they are keeping themselves safe, healthcare workers’ answers range from simply following minimal PPE requirements to being redeployed to other job duties or even voluntary furlough based on provider recommendations.

The lack of unified guidance is problematic, especially for immunosuppressed individuals who work with or near potentially infectious specimens or patients possibly infected with coronavirus. There is an insufficient amount of literature on this topic, potentially making work more stressful for front line professionals and researchers taking immunosuppressant medications. How many laboratory and healthcare professionals are out there trying to manage immunosuppressive therapy? Given women are affected by autoimmune disorders at higher rates than men, does this challenge present an additional barrier for women in science, research, medicine or academia? Is the current guidance enough? There is little to no data available to answer these questions. It is time to start the conversation and find the answers to keep each other and ourselves safe. 

Author: Lindsey Clark, M.P.H.

Lindsey Clark, M.P.H.
Lindsey Clark is an assistant professor in the laboratory sciences department at the University of Arkansas for Medical Sciences and a member of ASM’s Committee on the Status of Women in Microbiology.