Statement by Leslie D. Hsu, Northeast Regional Director on National Taskforce on Hepatitis B Immunizations: Focus on Asian Americans and Pacific Islanders; Co-founder 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 on special population sections. On a volunteer basis, I am the Northeast Regional Director on the National Taskforce on Hepatitis B Immunizations: Focus on Asian Americans and Pacific Islanders (Taskforce) and Co-founder 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 upon 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. Due to 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 use 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 not to scare you. This all happened ten years ago and treatment for hepatitis B carriers have 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.

Hepatitis B
Hepatitis B is a serious disease caused by a virus that attacks the liver. The virus can cause lifelong infection, cirrhosis of the liver, liver cancer, liver failure, and death.

About 1-2 people in the world die each minute from liver cancer or liver failure caused by hepatitis B, most of them are Asian. Although Asian Americans represent 4% of the population, they account for over half of the 1.3 million chronic hepatitis B cases in the United States. Liver cancer rates are 13 times higher in Vietnamese Americans, 8 times higher in Korean Americans, and 6 times higher in Chinese Americans than white Americans. These disparities are unnecessary especially when we have an effective vaccine. In fact, the hepatitis B vaccine is our first effective anti-cancer vaccine, since it prevents liver cancer.

Hepatitis B affects Asians at tremendously higher rates than any other race. It's 100 times more contagious than AIDS. It's endemic in Asian countries where certain myths perpetuate the disparities. For example, there are two myths which I've discovered in my ten years of experience in developing hepatitis B prevention programs.
" Myth 1: Hepatitis B is spread through food and water or sharing toilets.
" Myth 2: Hepatitis B is automatically inherited from mother to child.

First of all, hepatitis B is spread only through blood or sexual fluids. Secondly, hepatitis B is not inherited from mother to child. Children have a 95% chance of developing immunity if they receive the vaccine at birth. Some Asian countries do not vaccinate children of hepatitis B carriers because they believe they are already exposed. Unfortunately, we discovered that these two myths are widely believed among the United States Asian American communities that we serve. Over 80% of the people we screen and vaccinate believe in these myths and we take every opportunity to educate them about these two myths.

I have also heard stories from those that have insurance and a primary care physician that their doctors have refused to screen or vaccinate them for hepatitis B because they do not believe they are at risk. As you may know, hepatitis B screenings or vaccinations are not included in regular physical examinations.

In order to address these disparities and prevent other families from suffering a similar fate, I co-founded the Hepatitis B Initiative in 1997 while I was a graduate student at The Harvard School of Public Health. This program provides FREE hepatitis B screenings and vaccinations through a culturally appropriate mass media campaign. The Hepatitis B Initiative is unique in that it is run by a coalition of students from Boston University, Brown University, Cornell University, Harvard College, Harvard Medical School, Harvard School of Public Health, the Massachusetts Institute of Technology, Tufts University, and Wellesley College that brings together institutional partners who might not otherwise coordinate their efforts. All our materials and programs are developed with the community like the "guerilla media" event where youth made sidewalk chalk drawings to promote hepatitis B awareness. In 1998, the Hepatitis B Initiative was adopted by the Centers for Medicare and Medicaid Services (CMS) as an AAPI initiative of the U.S Department of Health and Human Services. In 2000, the Surgeon General's web site featured The Hepatitis B Initiative as a model program for eliminating health disparities. I continue to serve as a mentor to this program. This year, we have not received funding from CMS.

Also founded in 1997 is the National Taskforce on Hepatitis B Immunizations: Focus on Asian Americans and Pacific Islanders (Taskforce). The Taskforce is composed of a committed group of individuals and organizations from the public, private, and academic sectors. With technical guidance and funding support from the CDC (which ended in 2002), the Taskforce articulated as its goal to achieve 90% vaccination rate among AAPI children born before 1993 by 2004. This goal is almost complete with current estimates of the 3 dose hepatitis B coverage at 66%. This effort is primarily directed to the 12 states which have the highest number of AAPI children born between the years 1984-1993. Currently, the Taskforce recommends vaccinating high school or early college/university students. Through monthly conference calls, the Taskforce minimizes duplication in efforts across the Nation.

Maryland and Virginia are two of these 12 states which are at high risk for hepatitis B. Discovering that there has never been representation for these two states on the Taskforce, I volunteered to become the Maryland/Virginia Representative on the TaskForce in 2002. My husband and I began to explore how to expand the Hepatitis B Initiative to this area and also what could be done on a national level.

• As you may remember, this commission signed a joint letter with the Office of the Surgeon General in May 2002 to encourage organizations to promote awareness about hepatitis B. You can find a copy at www.surgeongeneral.gov.
• Just this past weekend, on May 4, I am proud to announce that a hepatitis B faith-based initiative for Maryland and Virginia was launched at the Korean Central Presbyterian Church. Dr. Moritsugu, Deputy Surgeon General, was there to commend this church, which is one of the largest in the area, for responding to your joint letter. And on May 18, Commissioner Jhoon Rhee will lead by example and get screened and vaccinated for hepatitis B at this church. Church leaders are providing FREE hepatitis B screenings and vaccinations on May 4 and 18 to approximately 400 members of the church. Later in the year, we hope to provide screenings and vaccinations to the other 6400 members of the church. And then expand this program to other churches throughout the area. So far, we have received only inkind donations for this very successful program.

I have been able to present to you three very successful and cost effective models in outreaching to Asian Americans and Pacific Islanders. These programs have saved millions of dollars for insurance companies. Did you know that hepatitis B not only cost my brother's life but also close to 1 million dollars for our insurance company? A liver transplant costs up to $150,000 per person. Each hospital stay costs up to $40,000 per person.

Although I am happy to brief you on the activities of all these organizations, it is important to realize that most of these organizations that are most effective in outreaching to Asian Americans and Pacific Islanders are challenged by issues of sustainability. The organizations I mentioned above either have no funding or are no longer receiving government funding. We hope that this commission can encourage more funding in the area of hepatitis B awareness.

For more information about hepatitis B and these programs, please visit www.hepbinitiative.org.

healthfinder®
Apart from hepatitis B, I am also quite passionate about delivering quality health information to Asian Americans, Native Hawaiians and other Pacific Islanders. As I mentioned earlier, my full-time job is with the Office of Disease Prevention and Health Promotion.

I am pleased to announce that on May 13th, in recognition of Asian Pacific American Heritage Month, and in support of his Steps to a HealthierUS initiative, HHS Secretary Tommy G. Thompson will launch a new resource section on the department's healthfinder® Web site devoted to Asian Americans, Native Hawaiians and other Pacific Islanders. Available at www.healthfinder.gov/justforyou, the easy-to-use consumer resource brings together, in one central location, multi-lingual information in Chinese, Hmong, Khmer, Korean, Laotian, Samoan, Thai, Tongan, and Vietnamese. Intermediaries, caregivers, or patient advocates searching for health information on behalf of individuals more comfortable in their native language will find helpful resources here.

For the past 6 months, I have been working along with the White House Initiative on AAPIs, the Office of Minority Health (HHS), and the American Public Health Association Asian Pacific Islander Caucus in evaluating and expanding resources on healthfinder.gov for Asian Americans, Native Hawaiians and other Pacific Islanders. I am preparing a report summarizing extensive interviews conducted with key intermediaries. Suggestions I heard from these intermediaries include establishing a lexicon and standards for translated materials.

Conclusions
I urge this Commission to be spokespersons on educating Asian Americans and Pacific Islanders about the importance of getting screened and vaccinated for hepatitis B. We need leaders like yourself to spread the word about this anti-cancer vaccine, to convince health care providers to screen and vaccinate Asian Americans and Pacific Islanders, and increase funding in this area.

Issues that need to be addressed by a national hepatitis B program or federal agency include: recommendations for hepatitis B serological marker blood tests and funding for the hepatitis B vaccine especially for those who are above the age of 18 and do not qualify for the Vaccines for Children program.

Honorable Chairman and commissioners, I applaud you for your commitment to improving the health of Asian Americans, Native Hawaiians, and other Pacific Islanders. Thank you for your attention.