Liver Cancer Awareness Month Interview with Hepatitis B Foundation’s Catherine Freeland

By Alex Eanes October 26, 2020

October marks Liver Cancer Awareness Month to raise awareness about the importance of liver health and encourage individuals placed at risk for liver cancer to seek screening for hepatitis B (HBV) and liver cancer. The U.S. has committed to the World Health Organization 2030 Sustainable Development Goals to eliminate viral hepatitis and achieve access to safe, effective, quality, and affordable essential medicines and vaccines for all by 2030. Additionally, the CDC Division of Viral Hepatitis 2025 Strategic Plan aims to reduce new viral hepatitis infections, inequities, and related deaths. Despite the availability of an HBV vaccine and commitment to global public health goals, there is an increasing burden of liver disease, particularly among Asian Americans and Pacific Islanders, as well as African immigrants. Asian American and Pacific Islanders account for more than 50 percent of Americans living with hepatitis B, despite comprising less than 5 percent of the U.S. population2. Furthermore, an estimated 5 to 18 percent of African immigrants in the U.S. are living with chronic hepatitis B and are disproportionately impacted by liver disease, liver cancer, and death3.

In recognition of Liver Cancer Awareness Month, I interviewed Catherine Freeland, the Public Health Program Director for the Hepatitis B Foundation. The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Catherine Freeland, MPH has spent the last four years working on addressing health disparities associated with hepatitis B and liver cancer. She is on the steering committee for the National Task Force on Hepatitis B, directs the Hep B United Philadelphia Coalition, and is working towards her Ph.D. in Population Health from Thomas Jefferson University. 

HBV and liver cancer disproportionately affect Asian American and Pacific Islanders and African immigrants. Why is that?

It has a lot to do with the epidemiology of hepatitis B and where the most common infection rates are occurring in the world. If you look at a global map of where HBV is most common, you’ll find hotspots in sub-Saharan Africa, the Pacific Islands and throughout Asia. There are a few factors that contribute to that. Immigration, mother to child transmission, and access to care to name a few.

In your previous answer you talked about access to care being an issue for HBV. What other structural factors exist in HBV and liver cancer inequities?

There’s a lack of knowledge among providers. I can’t tell you how many times at the Foundation we’ve gotten calls from people who’ve gotten misdiagnosed for their HBV or not tested for the correct things for HBV. Providers don’t ask every question on a patient’s medical history background, so it’s hard to identify those individuals that need to be tested at the primary care level. The foundation is calling for universal testing and universal vaccination so we can work to address the significant gap there. Additionally, we’re working with a lot of immigrant communities. There’s also cultural competency from the provider perspective and patient perspective so there’s potential challenges with communication of specific health problems. There’s access to care, which is a huge problem. Finding a provider they can see that they can actually afford and insurance [will cover] are challenges as well. Ultimately, it’s also asymptomatic so people may have it in their system, and they may feel fine until it’s often too late. At that point they might have a liver cancer diagnosis and they do go to the doctor expressing symptoms. There’s not much you can do in those cases.

Often in public health we speak of chronic diseases from a place of deficit. What work is the Hepatitis B Foundation doing to come up with solutions to the barriers you mentioned?

The first is making sure that the patient voice is heard. So, making sure people who are living with HBV are represented in the discussion and are involved in the conversations we’re having. In 2017 we launched the #justB campaign which is a patient storytelling campaign that brings together people who are living with HBV and provides a platform for them to create videos and share their stories associated with HBV and liver cancer. We have over 40 videos available online for our partners to also use and we disseminate those through social media platforms and at community events. We also conduct public health research to understand barriers within specific sub-populations. We have work that focuses on the Asian community and then the African community because each of those are very different and so diverse within themselves. We are making sure that we’re understanding what is going on from a cultural perspective and how we might be able to address them in a public health campaign. Another thing we’re working on is expanding the Project ECHO model and creating an East Coast hub in Philadelphia and a West Coast hub in the Bay Area. We’re hoping we’ll be able to address some of the issues with providers not testing for the right things to expand the primary care provider capacity. We’re constantly doing awareness campaigns, messaging, webinars, and bringing individuals together to share lessons learned and best practices associated with HBV. We have advocacy as well that’s constantly going on, really advocating for universal vaccination, and testing at this time.

What does health equity in HBV and liver cancer look like to you?

It’s all about access, hearing the patient voice and making sure that’s centered within everything we do. I think the patients are the priority and those living with HBV should be at the center of everything we’re doing. That includes messaging for all our awareness campaigns and making sure that access is there for those that need care, testing, and regular management. In addition, making sure everybody who needs it has access to vaccination. Those universal guidelines from CDC would be helpful to starting that process of health equity related to HBV and liver cancer. No one should die of liver cancer associated with HBV. It’s totally manageable. The fact that it’s happening is just unacceptable on so many levels.

How do you envision eradicating liver cancer?

That’s a big question. The first thing would be making sure everybody’s tested for HBV. Another is care that’s culturally competent, in the language that they prefer, with a provider they trust and can openly communicate with. I think those are significant barriers that a lot of patients have and why they’re not actually going to follow up with providers. I know that some of our providers say the management for HBV should involve regular liver cancer screening. That is important to make sure that individual doesn’t develop liver cancer later in life and should be part of regular management. I think if tomorrow they came out with a universal testing recommendation that was covered and everybody went out and got tested and managed, then it wouldn’t be a giant health disparity affecting so many communities.

Any last words you would like to share about liver cancer awareness and how we as public health professionals can do better to get the message out there?

Awareness is going to help so much at reducing some of the stigma associated with HBV. The lack of awareness at the population level is also low. Also, expanding the general population’s understanding of that connection and encouraging testing and management for HBV and liver cancer. Anything we can do as public health leaders and professionals to expand awareness and the connection between HBV and liver cancer—often people don’t associate the two together.