Patient Perspective: Living With HBV and HDV Coinfection in Pandemic Times

By the time COVID-19 came to the United States in 2020, I had been dealing with viral hepatitis and cirrhosis of the liver for decades. In this commentary, I’d like to share my perspective and experiences navigating the new healthcare challenges presented by the pandemic. 

My History
I’ll start with a little history. I was diagnosed with hepatitis B virus (HBV) infection in 1977, which incidentally is the same year that hepatitis delta virus (HDV) was discovered in Italy. In the 1990s, my hepatologist ordered a liver biopsy, which showed that I had fibrosis and HDV coinfection. It was a few years before I understood that HDV cannot replicate without HBV and that it increases my risk of liver problems.

Disease Monitoring During COVID-19
I’ve always followed the recommendations for monitoring my liver very closely. After March 2020, I was quite concerned about the COVID-19 risk while getting my bloodwork at my HMO’s main laboratory, because it is inside a large building that has no windows and is always very crowded. As luck would have it, my HMO opened a new facility, and I found that it was less crowded, especially very early in the morning. So, this was a serendipitous event that helped me cope with the situation.

I also have ultrasounds several times per year to monitor my liver for cancer. Again, I was nervous about getting infected with COVID-19 at the hospital during the pandemic, but these tests seem vital, so I went anyway. I missed only 1 ultrasound appointment, and it was because the medical staff was overwhelmed by a COVID-19 surge. Other than that, I kept up with the schedule.

Even before the pandemic, I had been receiving most of my medicines from a mail-order pharmacy for convenience—but not my antiviral. I was always afraid to get entecavir in the mail because I know that if you miss taking antivirals for a period of time, you can get a resistant virus. But the pandemic caused supply chain issues for the local pharmacy, and several times I received a 1-week supply instead of my usual 90-day supply, with instructions to try again next week. This meant more trips outside the house and more COVID-19 risk, as well as the fear that I wouldn’t get the medication at all.

Missing In-Person Care
What I missed most about pre–COVID-19 healthcare was in-person visits with my doctors. For a time, all appointments were by video. That worked okay—in fact, it was even better in some ways. It’s nice to wait in your own house rather than a tiny exam room with uncomfortably bright lights. But there was a point where I was really concerned about my ascites. I wanted my doctors to be able to feel my abdomen, and I just didn't believe that they could get the full picture on Zoom. I finally got brave and requested an in-person appointment. My doctor seemed exhausted. I don’t think he dealt directly with COVID-19 patients, but there’s a trickle-down effect such that everyone in the hospital and the clinics is working longer hours.

Clinical Trials and the Pandemic
We are all adapting to the new realities of the pandemic. My biggest concern now is the impact of the pandemic on clinical trials. I was involved in an HDV treatment trial from 2013-2019. Will the pandemic delay future trials and the development of treatments for HDV? I want to be around for new treatments.

My Strategies
In the meantime, the one thing I like to tell other patients is to be proactive about your liver care, even during the pandemic. Have your list of questions ready—be pushy and unapologetic. The other part of being proactive is educating yourself, which I started doing during the AIDS crisis. It’s easier now than ever to access reliable information about your health. I stick to websites that I know and recognize, such as the Mayo Clinic, National Institutes of Health, and University of California, San Francisco. I’m leery of other sites that seem to be trying to sell you supplements.

Your Thoughts?
Have your patients with viral hepatitis struggled to keep up with routine monitoring and treatment during the COVID-19 pandemic? How have you adapted to help them stay on track? Answer the polling question and join the conversation by posting a comment.