Background/Purpose: On March 13th, 2020, the President of the United States issued a proclamation declaring that the outbreak of coronavirus disease 2019 (COVID-19) was a risk to the public health and safety of the Nation. Three days later, my workplace instituted mandatory telework. In a prescient tweet at the end of the month, Tseng (2020) shared a conceptual framework (Fig. 1) of four waves of the COVID-19 pandemic and potential impacts upon health care. Since my initial diagnosis of Granulomatosis with Polyangiitis (GPA) in January 2012 and two relapses, closely monitoring my health became an ongoing part of life. Navigating maintenance care for GPA brought challenges in the era of COVID-19.

Intervention: My medical team pivoted to telehealth in lieu of in-person appointments and established a secure collaboration tool for visits. Dao (2020) offered appointment tips for rheumatologists much like what I experienced with other doctors. Being able to see and speak with my physicians virtually lessened the isolation I felt in my single person household with no pets. Laboratory results showed my GPA remained quiescent. My pharmacy provided free medication delivery during the initial lockdown period.

Maintenance: Gathering information from reputable sources enabled me to gain perspectives on the risks of COVID-19 infection and the benefits of early treatments and vaccines. Thoughtful comments from physician-scientists and clinicians helped me filter out “noise” found on social media. The Vasculitis Foundation hosted webinars where rheumatologists shared the latest data and information about COVID-19 and its potential impacts upon patients. The American College of Rheumatology also hosted webinars about patients with rheumatic diseases.

The global rheumatology community came together in a grass-roots collaborative effort to form the COVID-19 Global Rheumatology Alliance to collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians and others. The group developed a patient experience survey that received over 14,000 responses in a year. With the advent of COVID-19 vaccines, it launched a patient experience vaccine survey (Fig. 2) to learn how people with rheumatic disease make decisions regarding the vaccines.

Quality of Life: Shortly before receiving my first dose of the Moderna vaccine (Fig. 3), I was able to enroll in an observational prospective study at the National Institutes of Health about the effects of COVID-19 infection and/or vaccination on patients with autoimmune diseases. Being able to contribute to scientific research has been very meaningful in the midst of these chaotic times.

References
Dao, K. (2020, March 18). A Rheumatologist’s Tips: Telemedicine in 6 Easy Steps. RheumNow.com. Retrieved from rheumnow.com/content/rheumatologist%E2%80%99s-tips-telemedicine-6-easy-steps

Tseng, V. [@VectorSting]. (2020, March 30). As our friends and colleagues brave the front lines, we must also get ready for a series of aftershocks. It’s very hard to plan this far ahead while we’re in survival mode. We must prepare early and strategize our response to the collateral damage of #COVID19 [Tweet]. Retrieved from twitter.com/VectorSting/status/1244671755781898241

Fig. 1 – Conceptual model of the four waves of the COVID_19 pandemic (Tseng, 2020)

Fig. 2 – Global Rheumatology Alliance announcement about COVID_19 vaccination survey

Fig. 3 – The author receiving first dose of the Moderna COVID_19 vaccine

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/navigating-maintenance-of-a-rare-autoimmune-rheumatic-disease-in-the-context-of-the-covid-19-pandemic/