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Patient Perspective: Living With Chronic Hepatitis B During the COVID-19 Pandemic

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Anonymous Patient

Patient has no relevant conflicts of interest to report.

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Released: February 9, 2022

A Diagnosis of HBV Infection
When I was 13 years old, my adoptive parents sat me down and said: “We’ve got something serious to tell you. There is a chronic illness that you were born with, and there are some steps that you’ll want to take as you get older to manage it.” That’s when I learned that I had acquired infection with the hepatitis B virus (HBV) at birth in South Korea.

That explained the regular visits to the physician throughout my childhood in the United States. I’m now in my 30s, and I started treatment for chronic hepatitis B (CHB) in June 2019. I have well-established relationships with my care providers at the hepatology clinic—both a physician assistant and an attending physician. I actually was seeing the physician assistant in clinic on March 12, 2020, the day the first COVID-19 case was discovered in our state. We had a frank conversation about the fact that, although we didn’t know where COVID-19 was headed, our relationship would stay fundamentally the same. At that time, we knew the antiviral medicine for HBV was working well, and we planned to continue treating and monitoring as normally as possible. 

CHB Care During the Pandemic
In the year that followed, that’s what we did. I had to reschedule my bloodwork appointments once or twice, but mostly I was able to stick to my previous monitoring schedule. I continued taking tenofovir, and now I always keep an extra month’s supply on hand in case there is a supply chain issue. At one point during a COVID-19 surge, I had a telehealth visit instead of an in-person appointment. I understood the importance of reducing COVID-19 risk, of course, but I admit to not feeling as comfortable receiving medical care over the phone. I didn’t have any direct conversations about COVID-19 risk or vaccination with my providers, although I received plenty of automated reminders from the health system. Fortunately, I ended up getting vaccinated against COVID-19 early on through my employer because I am a home health caregiver.

My Thoughts on Patients Newly Diagnosed With HBV
My HBV care plan was established before the pandemic hit, which made the pivot to lockdown measures relatively straightforward. I’m concerned for people who are newly diagnosed during the pandemic who have to cope with all the questions and uncertainty at a time when the healthcare system is so overburdened. Particularly as a young person, a real challenge in living with CHB is talking with your doctor and getting straight answers about your future risk. You know that you have this chronic illness that is not life-threatening now but could become so in the prime of your life. How worried should you be? What kind of plans can you make? These conversations are tricky even without the added time pressure and physical distancing that accompany the pandemic.

HBV Advocacy Groups
My hepatologist works directly with several patient advocacy groups, so I discovered these organizations through her. Their scientific communications are robust, so following them on social media has proved helpful. The Hepatitis B Foundation, for example, has information on HBV and guidance on COVID-19. In addition, the stories from other patients living with HBV are a great mental health resource.

Your Thoughts?
How did your practice pivot during the COVID-19 pandemic to continue providing care to patients with CHB? Answer the polling question and join the discussion by posting a comment.

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