Testimony Before the President’s Advisory Commission on Asian Americans and Pacific Islanders

In the space of three years, college junior Leslie D. Hsu lost her brother and mother to hepatitis B-related liver cancer. Ms. Hsu’s mother, an Asian immigrant, was unaware that her family’s ethnicity put them at high risk for contracting HBV infection. She and her family were not tested for HBV until her 18-year-old son received his liver cancer diagnosis. In 2003, Ms. Hsu recounted her family’s experience with HBV infection in her testimony before the President’s Advisory Commission on Asian Americans and Pacific Islanders. A portion of her testimony is reprinted below, with her kind permission. Washington, D.C., May 7, 2003.

Statement by Leslie D. Hsu, Northeast Regional Director of the National Taskforce on Hepatitis B Immunizations: Focus on Asian Americans and Pacific Islanders; cofounder of the Hepatitis B Initiative; and chair of the Healthfinder steering committee at the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services.

Good afternoon. Honorable chairman and commissioners, thank you for inviting me to participate in this hearing. My name is Leslie Hsu. I sit before you today wearing several hats. My full-time job is with the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services, where I am the chair of the Healthfinder steering committee and lead special population sections. On a volunteer basis, I am the northeast regional director of the National Taskforce on Hepatitis B Immunizations: Focus on Asian Americans and Pacific Islanders and cofounder of the Hepatitis B Initiative.

John has asked me to brief you on activities that I am involved in with all three of these organizations. I will begin with my personal story that will shed some light on the issue of hepatitis B and the importance of improving the delivery of health information to Asian Americans, Native Hawaiians, and other Pacific Islanders.

My Story

My story is only one of many that demonstrate how greatly hepatitis B affects Asian Americans and Pacific Islanders.

My parents came to the United States to pursue their graduate studies. My mother was a talented artist and journalist. My father is an engineer. As you can imagine, they were complete opposites, but they had one thing in common, their love for children. They provided my brother and me with everything–love, religion, health care, education.

Perhaps my parents were so protective because we nearly lost my brother when he was born. My mother had to find a gravesite for him twice. [Because of] birth complications, he was on a respirator for the first two years of his life. He was named a “miracle” baby when he survived. Although he had asthma, he was otherwise a happy, healthy child who loved to take care of his sister and tease her. I used to wake up in the morning with a note pinned to my pillow from my brother telling me what the weather was going to be like for the day, so I would know what to wear.

His near-death experience made my family very close. Mom wouldn’t travel anywhere without us. She insisted that every summer, we take road trips to national parks. It was there in the wilderness that Mother taught us how to appreciate nature, love the Lord, and live life to its fullest.

One day without warning, my brother, who was 18, woke up with severe pain in his abdomen. When we took him to the doctor, we were told that he and my mother were hepatitis B carriers. My brother passed away a year later. One month after his death, my mother was diagnosed with liver cancer. I lost her the following year. I was a junior in college. In three short years, I lost everything because of hepatitis B.

I share this story with you so as not to scare you. This all happened 10 years ago, and treatment for hepatitis B carriers has dramatically improved. The main point of my story is how important it is to get screened and vaccinated for hepatitis B at an early age. All of this could have been avoided had we known how greatly hepatitis B impacts Asian Americans and Pacific Islanders.

Health professionals and the public will find the following resources useful for educating themselves about how important hepatitis B screening is for Asian Americans and Pacific Islanders.

REPORT #69

Disclaimer: Immunize.org publishes Unprotected People Stories about people who have suffered or died from vaccine-preventable diseases for the purpose of making them available for our readers’ review. We have not verified the content of this report.