I am a first-generation Filipina American living with hepatitis B. My father, mother, younger brother and I all tested positive for hepatitis B virus (HBV) in 1988, after my brother came down with jaundice as a toddler. Later, we discovered my father’s siblings also had the virus, which we all contracted through birth.
My family and I weren’t told much after testing positive, except that we were chronic “carriers.” I don’t recall ever being told that my condition was serious or that I should have my liver function monitored regularly.
In 2004, my father was diagnosed with liver cancer. We were told that he had only a few months to live, with few options for treatment. He passed away the following year, surrounded by family—his children, our mother and his siblings. He was 53.
HBV is widespread throughout Asia, and around 1 in 10 Asian Americans have chronic hepatitis B infection. Although Asian Americans and Pacific Islanders make up less than 5 percent of the population, we account for more than half of the nearly 1 million people living with chronic hepatitis B in the United States. We also have the highest rate of liver cancer. Hepatitis B and liver cancer represent the greatest health disparity between Asian Americans and Pacific Islanders and the general U.S. population.
After losing our dad, we didn’t immediately make the connection between hepatitis B and his cancer. We didn’t realize we were also at risk. Nor were we under the care of a liver specialist, as all people with hepatitis should be. But Dad’s death reminded us how short life can be, so we made it a point to live healthier lives. I decided to study Chinese medicine and my brother, AJ, became an Ironman triathlete.
It wasn’t until a couple of years after our dad passed that my doctor explained the seriousness of hepatitis B—that it could lead to complications, including cirrhosis and liver cancer. He emphasized that I needed to have semiannual checkups with a liver doctor, and I made sure to communicate this to my mother and brother.
Unfortunately, I was the only one who followed the recommendation. In 2014, just a few months after completing a full Ironman triathlon, AJ was diagnosed with end-stage liver cancer. We lost him three months later. My brother was a vibrant, energetic 30-year-old husband and father of two young children with a baby on the way.
I’ve made it my life’s work to help spread awareness about hepatitis B and the impact it has within the Asian community. Many are unaware that they are at risk and never get screened for HBV. Some know they have hepatitis B and avoid discussing it with their friends, families or doctors out of fear or shame. This needs to change. Knowing our status and regularly monitoring our liver health can ensure that hepatitis B doesn’t have to end with cancer.