We are pleased to share the speech Founder Leslie Hsu Oh made at Congressional Viral Hepatitis Reception:
Tonight, I'm speaking on behalf of those who cannot speak for themselves. These include my mother, brother, Ryan's Gill, Tom Lee and anyone who lost their life to viral hepatitis. This also includes 4.4 million Americans living with chronic hepatitis B or C and the 5 million Americans who do not know they are infected.
It is this latter group that I belonged to about 20 years ago when my brother phoned me in the middle of the night. This phone call will result in the loss of my entire family in a few years.
I was nineteen, just a few months into enjoying my college life, when my 17-year-old brother woke one night in pain. There were no symptoms, no warning, to prepare us for the news that he had liver cancer caused by hepatitis B. And my mother also had hepatitis B.
Jon-Jon died shortly after his 18th birthday.
A week later, we haven't even buried my brother yet and my mother was diagnosed with liver cancer. A journalist and photographer, she spent the next two months writing a memoir about Jon-Jon’s illness without mentioning her own. A year later, she died never knowing that her book was translated into Chinese and continues to be published internationally.
Since the doctor explained to her that the majority of Asians contract the virus from mother to child during birth, my mother tormented herself with the questions: Was this all my fault? Did I kill my son?
In those days, the hepatitis B vaccine was not administered to infants or required for daycare or school so even though my mother was pro-vaccine and diligent about our health-checkups, no one ever screened or vaccinated us for hepatitis B.
My mother died a few weeks before my twenty-first birthday. She died on the day of her twenty fifth anniversary. My father sold everything that reminded him of my mother and brother, then replaced them with a new wife and son.
That was the way my father grieved: to erase rather than preserve.
My relatives expected me to do the same. Don’t show weakness. Pretend nothing bad happened. I disappointed them all by doing just the opposite.
I founded the Hepatitis B Initiative in 1997 a few months after I started my studies at Harvard. Medical and public health students from all over Boston learned how to collaborate at an early stage in their career. Today, many organizations are using this model to harness the energy of students and their ability to facilitate partnerships between community organizations that wouldn't normally work together.
In 2002, a few months after our wedding, Thomas Oh and I expanded the Hepatitis B Initiative to the DC area. This time we delivered education, screening, and vaccinations directly to places that hard-to-reach populations gather, locations that other organizations might not have access to like schools, churches, health fairs, ESL programs, etc...
What makes HBI so effective: We believe the community is the expert in knowing what are the best methods to reach out to their peers. In the process of developing their own outreach strategies and materials, they learn about hepatitis and become advocates in their community. The outreach program they create is stronger and more sustainable since it is embedded into their way of life.
This is why 18 years later HBI is still operating in several states with little funding, on the sheer passion of volunteers. I often hear from former HBI leaders who continue to launch hepatitis B programs when they graduate to their next school or workplace.
Now under the leadership of Executive Director Jane Pan, HBI-DC screens more than 1000 a year and continues to deliver hepatitis B and C education, screenings, vaccinations, and treatment referrals to locations where the community gathers.
Because we empower community members to reach out to their own peers, people are more likely to be open about their fears.
- Immigrants are afraid to get screened for hepatitis because they think they might get deported.
- My own grandmother refused to dip her chips into a dish of salsa when she ate with my brother at a Mexican restaurant.
- My mother never once mentioned the word hepatitis B in her book.
- I am still unable to convince anybody, not even my relatives, to share their hepatitis B status publicly.
It’s rare to find someone like Congressman Hank Johnson who’s willing to openly talk about his condition. Most chronic hepatitis B carriers prefer to be silent. They are worried about what other people think. They are worried that they will lose their jobs or ruin their chance of finding a partner. Many won't even get screened because they believe that it’s better not to know whether they have hepatitis B or liver cancer or cirrhosis. They would rather just be happy and live their life since there are no symptoms.
Part of it is human nature, to ignore what we are scared of. But it’s cultural too. I have been told all of my life to “Save face.” The Chinese even have an idiom that some translate to “There’s more power in silence.”
Out of respect for my family, even I am not allowed to share the extent to which hepatitis B continues to impact my life. My relatives have never approved of my public role in hepatitis advocacy. They have however given me permission to publish a memoir that I’ve been working on that will give voice to those who cannot speak for themselves. Perhaps, one day, you will find this book a useful tool in your advocacy work because in the end, this is not just a story about my mother or brother or hepatitis B or C or vaccine-preventable diseases, it’s about not being afraid of what other people think.