May is Hepatitis Awareness Month – NVHR is going Back to Basics to raise awareness of hepatitis A, hepatitis B, hepatitis C, and hepatitis D.

Richard Smith is a patient advocate with Hep Free Hawai’i and Robin Lord Smith is the Community Engagement Coordinator at National Viral Hepatitis Roundtable (NVHR). This interview has been lightly edited for clarity and length. Click here to check out our other blog posts in the 2022 Hepatitis Awareness Month advocate series.

NVHR: What would you like to share with us about your journey with hepatitis B?

RS: I first got involved in hepatitis awareness when my mother and aunt were both diagnosed with hepatitis B. My aunt had an emergent case and went through liver failure. I’ve seen the extremes of how this virus can overpower people. I believe that early detection and treatment will keep people living with hepatitis B safe and healthy to live a long life.

I recently moved back home to Michigan because my mom had a liver transplant due to advanced hepatitis liver infection and cirrhosis. Her liver was deteriorating. She spent the majority of 2021 in and out of the hospital. At one point, she was there for four months. It’s still ongoing.

When I was diagnosed, I knew nothing about hepatitis B and all of the information I was getting was pretty much preparing me for death. I do not recommend Googling ailments because you’re going to find a lot of extreme circumstances online. Thankfully, early detection and treatment can keep you safe and healthy to live a long life. The Hepatitis B Foundation gave me the best information that could tell me how I could keep on living, instead of focusing on the extreme cases.

NVHR: We’ve made some progress in raising awareness about hepatitis B, but there is still work to be done. What are some ideas you have of ways to raise awareness about hepatitis B?

RS: We all know that hepatitis B affects certain populations more so than others, such as the Asian and African communities. Yet, resources aren’t readily available in other languages. All of my family immigrated from Korea. Although they have been in the U.S. for a while now and their English is proficient for day-to-day life, it’s difficult to understand English medical jargon pertaining to hepatitis and living with a liver transplant. Resources at the doctor’s office are often only in English. There needs more accessibility to information in different languages locally and nationally if we are going to make inroads and ultimately eliminate this disease.

NVHR: What are your priority actions as a hepatitis B patient advocate? What do you think is most needed for the community?

RS: We need to ensure that appropriate information is being disseminated to the community. I know that different organizations prioritize speaking with doctors and clinics, but there are also different community centers, LGBTQ+ centers, and HIV centers that can benefit from receiving information about hepatitis. We also have the same opportunities with local pharmacies and even grocery stores. For instance, we know that Asian communities make up nearly half of all hepatitis B cases in the U.S., and one of the biggest Asian/Korean markets is H Mart. Why hasn’t anyone approached them about giving out pamphlets to their customers? We need to meet communities where they are in their everyday lives.

NVHR:  What message would you like to share with other patient advocates about hepatitis B?

RS: My message would be to not give up hope and be persistent in the face of difficulties. There are going to be a lot of doors shut on you, but there are always others that may open as a result. I encourage advocates to think outside of the box to find creative ways to reach more people, and to bring in volunteers and interest from other professionals.

NVHR: What is one thing you wish you knew when you started your hepatitis B journey?

RS: Honestly, that I was not going to die. The way I learned about my diagnosis was unconventional. I received an unexpected call from my doctor, and she asked me when I was going to tell her that I had hepatitis. But I didn’t know I had it. Meanwhile, my aunt was going through liver failure because of hepatitis B, and we were considering getting her a liver transplant. It was traumatic. After I was diagnosed I was sent to a liver center and everything was kind of a blur. I was trying juggle my aunt’s situation and my diagnosis at the same time. I was told I was going to get interferon treatment and even though the doctors and the staff were very kind and took the time to explain everything, I was not in the right mindset to absorb any of the information. So, I just had to keep looking for information on my own time until it stuck.

NVHR: Thank you so much for your commitment to the community and for joining us today and sharing your story, thoughts, and ideas for other advocates. Is there anything else you would like to share with the community and the world as a large?

RS: I encourage everyone with lived experience to come out and share their story. It’s important to let others know that we are here, and it allows us to correct some of the misinformation and stigma around hepatitis. Every time I explain to somebody that I have hepatitis B, they assume I drank some bad water and I have to educate them that there are different types of hepatitis viruses and that they are transmitted in different ways. Don’t be afraid to come out and explain what you’re going through. You will be surprised how many people are out there that are very supportive.