Leslie Hsu Oh is a founder of The Hepatitis B Initiative in Boston and DC/MD/VA. When her brother, John, was seventeen years old, he suddenly experienced severe pain in his abdomen. A few days later, the doctor informed them that John had liver cancer and that both he and their mother had hepatitis B. John died shortly after his eighteenth birthday.
Leslie and her mother, Auxilia, come from a long line of artists, so in the days that followed John’s death, words were the only way they could make meaning out of what happened. A week later, Auxilia was diagnosed with liver cancer. She decided to finish writing her book about John’s battle with cancer and keep her disease a secret. A few weeks before Leslie’s twenty-first birthday, Auxilia died mostly alone since she did not want others to know about her condition.
Fueled by her grief, Leslie founded several organizations; one of them survives today as The Hepatitis B Initiative. HBI began in Boston in 1997 when Leslie was a student at Harvard School of Public Health. In 2002, Leslie and her husband, Thomas Oh, expanded HBI to the DC area.
In addition, she has served as Federal Liaison to the White House Initiative on Asian Americans and Pacific Islanders; Northeast Regional Director of the National Task Force on Hepatitis B: Focus on Asians and Pacific Islanders; Program Chair for the American Indian, Alaska Native, Native Hawaiian Caucus of the American Public Health Association; Membership Chair for the Asian Pacific Islander Caucus of the American Public Health Association; and Board of Directors member of the National Viral Hepatitis Roundtable. She also designed user-centered web sites specifically for special populations for the Alaska Native Science Commission and healthfinder® for the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services, and Surgeon General’s web site.
She received a master’s degree in Health Communications from Harvard School of Public Health and a MFA in Creative Writing from University of Alaska Anchorage. She is the recipient of the Rasmuson Foundation Individual Artist Award; the first Julius B. Richmond Young Leader in Public Health Award for outstanding dedication to the health and well being of the community and demonstration of initiative and advocacy in public health; the first National Award for Excellence in Public Health Leadership; the Sun Memorial Award for exemplifying a commitment to improving the health and well being of people in underserved populations; and the Schweitzer Award for reverence for life. She is also a Fellow for Life with the Albert Schweitzer Fellowship.
In their advocacy, Thomas and Leslie discovered that silence is hepatitis B’s power. Hepatitis B thrives under a cloak of stigma, where most chronic hepatitis B carriers like Auxilia prefer to be silent about their condition, thus unknowingly spreading misinformation and perpetuating unnecessary fear.
Leslie was surprised that her mother never mentioned hepatitis B or her illness in A Whale of a Boy, her book about Jon-Jon’s battle against cancer, which was published in 1995 and reprinted in 2010.
Her omission empowered Leslie and Thomas to dedicate their lives to rooting out this silent killer.
Leslie said, “An Alaskan Native Elder once told me that it’s important to examine the motivation behind silence. If it is based on fears, usually of death or stigma, then the silence comes from a dysfunctional place. We live in a defensive society, one that teaches us to be private, internalize negativity and swallow our emotions. It takes courage to cry in public. But when you do, it can heal others.”
Pregnant with Kyra, Leslie started writing again. She realized that all her life she had been raised by elders instructing her to: “Save face,” “Act as if it never happened,” “Better not to talk about it.” Before Ethan was born, Leslie finished her MFA by writing a memoir about the years that followed MaMa and Jon-Jon’s death. She was surprised that she wrote about breaking silence by openly discussing hepatitis B and telling a secret of her own. She hopes that her story brings courage to others who are fighting hepatitis B. See www.lesliehsuoh.com.