Beyond the Exam Room: Patient and HCP Perspectives on Barriers to HBV Care in the United States

Jennifer Wild is a nurse in California who is living with chronic hepatitis B virus (HBV) infection. In this discussion, she and her physician, Dr Mindie H. Nguyen, discuss their experiences with barriers to HBV care and key action items to reduce those barriers in the United States.         

Patient Awareness of HBV

Jennifer Wild, MS, BSN, RN, OCN:
Mindie, when I became your patient almost a decade ago, I was unaware of my HBV status despite my education and professional background. This is typical, as the National Foundation for Infectious Diseases reports that of the 2.2 million people with chronic HBV infection in the United States, 67% are unaware of their infection.

Mindie H. Nguyen, MD, MAS, AGAF, FAASLD:
That’s right. Very sadly, many of my patients have an HBV diagnosis before their first visit with me because they were recently diagnosed with liver cancer or liver disease.

Barriers to HBV Care

Jennifer Wild, MS, BSN, RN, OCN:
What barriers to HBV care do your patients experience?

Mindie H. Nguyen, MD, MAS, AGAF, FAASLD:
Given that there are limited data from studies, hearing directly from my patients is how I learn the most about barriers to HBV care. In North America, there are many immigrants from countries where HBV is endemic. However, not all healthcare providers are aware of their patients’ nationality or the prevalence of HBV in their patients’ home country. Fortunately, there is a new initiative in California that emphasizes diagnosing and monitoring patients with HBV.

Although the hepatitis B surface antigen (HBsAg) test used to diagnose HBV is inexpensive, many people do not get diagnosed. One common barrier is that people—especially patients from endemic regions—do not want to know their HBV status because the diagnosis can be stigmatizing in their communities or their cultural background. Limited financial coverage for testing also may be a factor for low diagnosis rates. However, the testing rate is still low, even among people with private insurance.

In your experiences as a patient, nurse, and family member of people with HBV, what barriers to care have you observed?

Jennifer Wild, MS, BSN, RN, OCN:
I was born in South Korea and moved to the United States when I was 3 months old. Despite having access to health insurance as a child, completing the HBV vaccine series, and having extensive medical knowledge, I was diagnosed with HBV more than a decade ago. It is possible that I was exposed to HBV perinatally and not able to clear the virus. Therefore, by the time I was up to date with my HBV vaccine series, I was already chronically infected.

Many of my patients find out about their HBV diagnosis at the same time as their liver cancer diagnosis. I agree that stigma is a barrier to HBV care, especially in families. After receiving my HBV diagnosis, some of my family members encouraged my brother to skip getting tested. Common questions among my family included: “What good will it do to know the HBV diagnosis?” or “Why bother?”

A lot of patients do not know they have HBV until they experience the onset of HBV symptoms and receive a diagnosis at a hospital. By that time, HBV is at an advanced stage. I often observe this pattern despite the patient’s educational background, access to care, age, work history, insurance coverage, or care received from a primary care provider.

Benefits of Ameliorating Barriers to HBV Care

Jennifer Wild, MS, BSN, RN, OCN:
As I reflect on my experience as a patient, I wish I had known about the risk associated with being born in a country where HBV is endemic or having family coming from one of those countries. I had no idea. I thought that once I was in the United States, my risk factors were significantly reduced. As an adult, I did not realize that the period of risk of exposure had already happened for me. Thus, I think that providing patient education on HBV in the primary care setting could be improved. What is your perspective on the benefits for ameliorating barriers?

Mindie H. Nguyen, MD, MAS, AGAF, FAASLD:
I agree. The CDC reports that many liver cancers are related to an HBV infection. Patient education can reduce misconceptions or lack of information. Patients are more likely to be open to HBV testing and uncovering a diagnosis if they know that HBV can cause cancer, even in patients who are 20-40 years of age. If HCPs diagnose and treat the patient, we can prevent or reduce the risk of liver cancer. Similarly, if liver cancer is diagnosed early, it can be cured.

Call to Action in Clinical Settings

Jennifer Wild, MS, BSN, RN, OCN:
What key “call to action” items do you think should be addressed in clinical settings to reduce or eliminate local barriers to HBV care in the United States?

Mindie H. Nguyen, MD, MAS, AGAF, FAASLD:
The key call to action items that should be implemented in clinical settings include testing, vaccinating, and diagnosing HBV. HCPs should diagnose HBV early. To educate patients with HBV, rather than discussing all the HBV treatment pathways, HCPs should instead start with very simple facts such as survival rates for liver cancer. For instance, the 5-year survival rate of someone who presents with HBV symptoms would be substantially higher if they were cleared for liver cancer.

Per the new Advisory Committee on Immunization Practices recommendations, many HCPs encourage administering the vaccine to all adults. However, data demonstrate that people from endemic areas are unaware of their preexisting HBV status. Thus, they should be tested before vaccination.

Despite having an HBV diagnosis, some patients think that they can get rid of the virus once they receive the vaccine. I receive many consultation requests, both from patients and HCPs, asking whether it is beneficial to receive an HBV vaccine if the person has already been infected with HBV. Therefore, efficient patient education sessions on HBV vaccines are very important.

Jennifer Wild, MS, BSN, RN, OCN:
It was not until I started my first job as a nurse that an HCP asked: “Has anyone ever tested you for HBV antibodies to make sure your vaccine worked?” and “Has anyone tested you for the HBV surface antigen?” All HCPs should complete serologic testing for their patients before administering the HBV vaccine. The tests should detect HBsAg, as well as antibodies to the surface antigens (anti-HBs) and core antigens (anti-HBc) of HBV. I often say that if I had not changed my professional aspirations to nursing, I would not have known of my HBV status.

Your Thoughts?
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