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Over five million Americans are estimated to be living with chronic viral hepatitis. Up to 1.4 million have hepatitis B and over 3 million are infected with hepatitis C. With the observance of World Hepatitis Awareness Day on May 19, I'm reminded of my own screening experience six months ago.
I walked past the tabletop plastic Christmas tree with blinking white lights and sporadic tinsel. Winter decorations always seemed a little out of place to me in sunny southern California. I waited a few minutes at the lobby desk, and eventually I was directed to a woman who spoke English. I asked her where the screening event was.
"It is testing for hepatitis B."
"Yes, I know. Is it here?"
"You want testing for hepatitis B?"
"Yes. Is this the Herald Community Center?"
She nodded, and with a sigh of resignation, explained that I needed to go out and in the next building. "Hepatitis B!" She called after me, in a last ditch attempt to explain the situation.
I work on the Los Angeles Hepatitis Intervention Project (LA HIP), a project of the Asian Pacific Liver Center (APLC) of St. Vincent Medical Center, so actually, I didn't need an explanation. I was in San Gabriel, CA, a predominantly Chinese suburb of Los Angeles, attending one of the APLC's free screening events. I think the woman thought that I didn't need to be screened, since I'm not Asian. The hepatitis B virus (HBV) disproportionately affects Asians and Pacific Islanders (API) in the U.S. - approximately one in ten has HBV and doesn't know it. It is a particularly big problem in immigrant populations since many countries do not test for hepatitis B or vaccinate against it. Mothers with chronic HBV unknowingly pass the infection on to their babies whose immune systems are not strong enough to fight it off. The disease often shows no symptoms until middle age when severe liver damage has already set in. If caught early, the infection can be controlled with medication, and those who test negative can be vaccinated to prevent contracting it in the future. The APLC's senior nurse practitioner, Mimi Chang, MSN, NP, recommends that all Asians and Pacific Islanders who have not built up antibodies to hepatitis B, either through vaccination or previous exposure to the disease, be immunized.
Asians and Pacific Islanders are not the only ethnic groups affected; any immigrant or child of immigrants from a country with a greater than 2% prevalence of HBV should be screened, according to the Centers for Disease Control (CDC). In addition to all of the API countries except Japan, this includes countries from Africa, the Middle East, the former Soviet Union, and Europe, among others. A complete list is included at the end of this article. It is also important to screen and vaccinate babies adopted from any of those countries, even if the adoption organization in the foreign country claims all tests and immunizations are up to date.
The virus is transmitted through blood contact, so household members and sexual partners of those with chronic HBV should be screened and vaccinated, as well as pregnant women, health care workers, homosexual men, intravenous drug users, and anyone traveling to a country with a high prevalence of hepatitis B. I didn't know about viral hepatitis back in 1992 before I left to work in Russia. Luckily, I didn't have a problem, but I wish my doctor had recommended that I get vaccinated. Unfortunately, because family doctors in the U.S. are lacking basic knowledge about the disease, testing and vaccination are not recommended as often as they should be for those at risk.
I have very little opportunity now to be exposed to HBV, and as a healthy adult, if I were to contract it, I would probably clear the disease on my own, but I wanted to understand the screening process that is part of our project. I went in to the other building and made my way to the registration table. Everyone was speaking Chinese. I grabbed a survey form and asked one woman where the screening was being set up. She didn't understand. I asked her if she knew where Mimi or Jason were, two members of the APLC staff. She pointed me to another woman at the end of the table. I asked that woman, and she stared at me silently for a few minutes, shaking her head sideways. "Hepatitis B screening!" she barked at me. I guess she thought I was in the wrong place too.
A third woman approached the second woman and chatted with her loudly in Chinese. People reached around me from behind to grab survey forms, looking askance at me as they left. The new woman asked me what I wanted, and I asked again about Mimi, Jason, or any of the APLC staff setting up to screen. Her face lighted up. "Yes, yes!" she said excitedly. "You go see lady down there."
I followed the direction of her outstretched arm to a tall blonde woman I had never seen before - the only other white woman in the room. Disheartened, I approached her. It turned out that she was the representative for Gilead, the pharmaceutical company sponsoring the event. While she didn't know Mimi or Jason and had never heard of the LA HIP project, she did know that the screening would be upstairs, so I headed that way. I needed a familiar face.
I found Jason and the APLC volunteers setting up to screen. On one table there were a few laptop computers for entering basic registration data and preparing a test tube label for each patient. I hadn't realized that staff was inputting this info twice - once on site and then again into the new data base LA HIP programmers had designed for them. It was good that I learned this; now our programmers are creating a way for the staff to easily upload this registration excel sheet into the data base directly, eliminating the data entry duplication. Other tables were set up with test tubes, rubber gloves, and disposable needles for drawing blood. The screening room was very organized, with signs in English and Chinese.
After taking some photos for the LA HIP Facebook page, I went back downstairs to sit in on the lecture by Tse-Ling Fong, MD, a liver specialist at the APLC. I was very excited to attend his talk; I had read a lot about hepatitis B and was eager to fill in any gaps in my knowledge. Additionally, I was curious to see what kinds of questions the audience members would have. Dr. Fong approached the front of the room and stood under a bright red slide with a large white "B" - part of Gilead's "B Here" campaign to raise awareness of hepatitis B in the Asian American community (willyoubhere.com). Except for that massive B shining brightly above Dr. Fong, the rest of the slide was in Chinese. Then he began speaking in Chinese. He spoke in the same voice, with his usual calm, measured tone, and sounded so like himself that I had to strain to be sure that it wasn't English. No, he was definitely speaking Chinese.
The experience was a little surreal, like watching a ventriloquist dummy. I was sure that he would switch to English in a few minutes. He didn't. I turned to the man next to me. "Do you think he is going to do the entire lecture in Chinese?"
"Yes," he answered. I groaned. "Do you need me to translate for you?" he offered. I smiled, happy to finally feel welcome, but declined. The man pointed to the survey form in my hand. "You know this is a test for hepatitis B?" I explained that I worked on a project doing outreach and designing a data base for Dr. Fong's group, so yes , I did know. It felt good to finally give an explanation. I reminded him that Asians were not the only ones infected with hepatitis B, but he didn't seem convinced.
I left my seat and moved up closer, crouching in the aisle to take pictures. When I was done with that, I filled out my survey form, and then I listened to Dr. Fong, trying to pick out Chinese phrases to identify. It was useless. The red slide with the white B stayed up the whole time, taunting me. Many of the audience questions seemed to deal with specific results of previous screenings, which I deduced from the lab reports being waved about as each question was posed. There were probably 70 people or so at the lecture, and on a Thursday afternoon at that, so people were definitely interested in the topic. This presentation had been advertised in Chinese language newspapers and was held at a community center in a predominantly Chinese area; other screenings were often held at local health fairs or churches in API communities.
When the lecture was over, a man with thick glasses made an announcement in Chinese. My neighbor explained the system - a range of numbers would be called out and when the number on my survey form fell into that range, I could go upstairs for the screening. He told me how to say 37 in Chinese so that I could recognize it when it was called. Right . I think it had seven syllables. Luckily Mimi spotted me and brought me upstairs herself. The staff entered my registration data, made a test tube label for my blood, and asked me to verify the information they had printed out.
As Mimi tied the tourniquet on my arm and felt for my vein with her finger, I looked away, slightly light-headed. "You're not going to faint on me, are you?" Mimi asked loudly. "I've never had anyone faint on me." A number of elderly patients smiled at me and chuckled. My lecture neighbor appeared at the table across from me and rolled up his sleeve for the nurse. "You'll be fine, won't you?" I nodded and breathed in deeply, focusing my gaze intently away from my arm. I imagined the hubbub that would ensue if I did pass out. "What was she doing here?" they would cluck at each other. "Didn't she know this was a hepatitis B screening?"
The blood was drawn without any fainting spells and I gathered my things to leave. A young man offered me a bottle of water on my way out of the screening room, and then downstairs a pair of women handed out bright pink boxes from a local bakery. A present! A completely wonderful, unexpected present! I walked out into the bright sunlight, dumbfounded. An old Chinese man stood by the door with his box, apparently as surprised as I was. We looked at each other and smiled.
"It is nice, yes?" he pointed towards his box.
"It's great!" I agreed. "I'm starving."
Excited like a little kid, I tore open the pink box as soon as I reached my car. There was a little custard cup with fruit on top (I ate that right away) and two triangles of a sandwich with the crust cut off. I bit into one and the three layers slid out in succession like a set of stairs. It was white, pink, and gold, the ham all slippery from the mayonnaise and strange, foamy cheese. I ate all of it and loved it. If I'd also had a cup of tea, I think I would have fallen asleep right there, completely content.
Wednesday, May 19, is World Hepatitis Awareness Day. Currently 800,000 to 1.4 million Americans are chronically infected with HBV, a real tragedy since a vaccine does exist. The APLC's Mimi Chang, MSN, NP, explains that the majority of those infected are foreign-born or the children of recent immigrants who just don't know that they are at risk. "Hepatitis B is a silent disease. Patients don't have symptoms until the liver is seriously damaged." She adds that a bigger problem for the APLC is that many patients who test positive either have no insurance or are underinsured and can't afford the treatment. "Patients who have HIV automatically get Medi-Cal, but there is no system for that with hepatitis B. They are similar diseases, but one is covered, and one is not. The CDC fund for HIV is much bigger than the one for viral hepatitis." Patients who avoid treatment until they need liver surgery or a transplant create a much heavier financial burden on the health care system than they would have if their condition had been monitored and controlled.
The U.S. health care system needs to welcome all of its citizens, sick or healthy, recent immigrant or fourth generation American. My neighbor's offer to translate, Mimi's joking to relax me, and the pretty boxed lunch went a long way towards making me feel comfortable and, well, wanted . Shouldn't we do at least that for our fellow citizens - particularly when the financial stability of our country and, even more importantly, lives are at stake? Solid policies to spread awareness and distribute timely treatment instill the warm acceptance that all Americans need to feel good about our country again.
Thankfully, my test came back negative for the hepatitis B antigen and negative for antibodies, which means I have no immunity to the disease and should be vaccinated. It is a series of 3 shots, $17 each at a reduced rate at the APLC. Next time I'll try to catch the APLC's other liver specialist, Dr. Ho Bae, when he gives a talk in Korean. I have no doubt that it will go as well as the first time.
The CDC recommends that people born in these countries or born of parents from these countries be tested for hepatitis B.
Appendix: List of Countries with Greater Than 2% HBsAg Prevalence
Afghanistan, Albania, Algeria, Angola, Armenia, Azerbaijan,Bahrain, Bangladesh, Belarus, Benin, Bhutan, Bosnia and Herzegovina, Botswana, Brunei, Bulgaria, Burkina, Faso, Burundi, Cambodia, Cameroon, Cape Verde, Central African Republic, Chad, China, Comoros, Congo, Croatia, Cyprus, Czechoslovakia (including Czech Republic and Slovakia), Democratic Republic of Congo (Zaire), Djibouti, East Timor, Ecuador, Egypt, Equatorial Guinea, Eritrea, Estonia, Ethiopia, Europa Island, Gabon, Gambia, Ghana, Glorioso Islands, Guatemala, Guinea, Guinea-Bissau, Guyana, Haiti, Honduras, Hong Kong, India, Indonesia, Iran, Iraq, Ivory Coast, Jamaica, Japan, Juan de Nova Island, Kazakhstan, Kenya, Korea, Kuwait, Laos, Latvia, Lebanon, Lesotho, Liberia, Libya, Lithuania, Macedonia, Madagascar, Malawi, Malaysia, Maldives, Mali, Mauritania, Mauritius, Mayotte, Moldova, Montenegro, Morocco, Mozambique, Myanmar (Burma), Namibia, Nepal, Nigeria, Oman, Pakistan, Philippines, Poland, Qatar, Reunion, Romania, Russia, Rwanda, Sao Tome & Principe, Saudi Arabia, Senegal, Seychelles, Sierra Leone, Singapore, Slovenia, Somalia, South Africa, Spain, Sri Lanka, St. Helena, Sudan, Swaziland, Syria, Taiwan, Tajikistan, Tanzania, Thailand, Togo, Tomelin Island, Tunisia, Turkey, Turkmenistan, Uganda, Ukraine, United Arab Emirates, Uzbekistan, Venezuela, Vietnam, Western Sahara, Yemen, Yugoslavia, Zambia, Zimbabwe.
Journal of Viral Hepatitis, Vol. 17, p.28-33. Info can also be found on CDC website, MMWR Report for Sept. 19, 2008, figure 3 and table 3.
More information on hepatitis B test results and screening recommendations can be found on the website for the Immunization Action Coalition “Hepatitis B Facts: Testing and Vaccination”
Information on advocacy efforts to increase funding for viral hepatitis and link to download copy of the IOM report “Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C” www.nvhr.org
Asian Pacific Liver Center www.asianpacificlivercenter.org
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