| A Silent Killer: Hepatitis B |
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| February 2005 | |
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, Originally published in March 2005 My HMO doctor nonchalantly read my lab results to me over the phone. “Everything came out fine except you tested positive for hepatitis B,” she said. “Hepatitis B?” I repeated. “The sexual kind,” she added. I had heard of hepatitis, which is found in contaminated food and water — but not the “sexual kind.” I suddenly felt very alarmed and ashamed. I had an STD? Hepatitis, the Latin word for “liver inflammation,” can be caused by bacterial infections, alcoholism and various viruses. In my case, I had hepatitis B, which is caused by the hepatitis b virus HBV and can lead to scarring of the liver and liver cancer. There also are hepatitis A, C, D, E, F and G. Hepatitis A is the virus found in contaminated food and water. Hepatitis B ranks as the No. 10 or No. 11 cause of death in world, depending on the source. It kills one million people each year, and a large percentage of them are Asians and Asian Americans. “HBV is transmitted the same way as HIV [through blood and bodily fluids], but is up to 100 times more infectious than HIV,” says Dr. Sam So, director of the Asian Liver Center at Stanford University. “The three major modes of transmission are from mother-to-newborn at birth; injecting or contact with open wounds with needles, syringes, blood or razors, contaminated by the blood of people with hepatitis B; and unprotected sex.” And unlike HIV, HBV can live outside of the body for seven days on items such as toothbrushes and razors. In the United States, an estimated 1.3 million Americans are chronically infected with HBV. More than half are API Americans. — Asian Liver Center at Stanford UniversityOn the positive side, Dr. So adds, 90 percent of adults who are infected with HBV develop antibodies and become immune to the virus. They have acute hepatitis b and usually recover completely in fewer than six months. Chronic hepatitis b occurs when someone tests positive for HBV for more than six months. I desperately wanted to be in the acute group. Symptoms of hepatitis B can include jaundice, fatigue, dark urine, abdominal pain, loss of appetite, nausea, vomiting and joint pain. However, many people mistake the symptoms for the flu or don’t feel any symptoms at all, Dr. So says. Testing for hepatitis BAt my next appointment, my doctor gave me some outdated handouts about possible treatment and referred me to a liver specialist. I was very disappointed by her hurried attitude. I felt even worse when I was required to register with the Department of Public Health for carrying an infectious disease. I started to feel like I had the stigma of HIV. I wondered if my job could find out. I racked my brain. How did I get this disease? Who gave it to me? I immediately accused my last partner, who turned up negative on his hepatitis tests. “Most Asians become infected early in life from mother-to-child transmission,” Dr. So says. I wondered if that was my case. Then I didn’t feel so bad, but now I worried about my mother. “Of the 350 to 400 million people in the world who are chronically infected with hepatitis B, 275 million reside in Asia and the Pacific Islands. By comparison, there are 47 million people with HIV/AIDS in the world,” statistics from the Asian Liver Center show. I was stunned by these figures, and yet I started to feel less alone. Was I part of some epidemic? Dr. Sharat Misra, consultant in gastroenterology and liver diseases at the American College of Gastroenterology says the prevalence in Asians may be “because the environment is conducive to the spread of this infectious disease — crowded living conditions, poor personal hygiene, lack of use of disposable syringes and needles, commercial blood donations and unsafe sexual practices.” Then the immigration of Asians to the United States brings the disease here. The only way to diagnose and/or protect against HBV is through a blood test, Dr. So says. He says the test is rather simple and inexpensive, and you only need to do it once in your life. But he says, the tests are not included as part of routine blood work, so the patient must ask for them. “You should get the blood test for hepatitis B surface antigen (HBsAg) … you should also get the blood test for hepatitis B surface antibody (HBsAb or anti-HBs) to see whether you already have developed immunity to hepatitis B through prior vaccination or infection. If both HBsAg and HBsAb are negative, that means the person is not protected and should get the three-shot hepatitis B vaccine to provide lifelong protection,” Dr. So says. The hepatitis B vaccine, he adds, is so effective in preventing liver cancer, that it’s called the first “anticancer” vaccine. How did I not know?I lost many hours agonizing over why I wasn’t vaccinated against HBV. The hepatitis b vaccine was available in 1982 when I was 12. But back then, it wasn’t a required vaccination. During my college years, there was plenty of awareness for HIV but not HBV. According to Centers for Disease and Control Prevention statistics, the highest rate of [the] disease occurs in 20- to 49-year-olds. Statistics also show that some HBV chronic carriers develop liver cancer as early as 30 years old. I was 33 at the time of diagnosis and was now appropriately freaked out, yet I still did not feel sick. “We call [hepatitis b] a silent killer because even though this viral infection has chronically infected 350 to 400 million people worldwide and caused as many as a million deaths a year, it has not attracted any media attention,” says Dr. So, who identifies himself as “an activist working toward the elimination of health disparities in the API community.” Furthermore, Dr. So says most American doctors are not trained to screen for hepatitis b in their Asian patients, even though the test can cost as little as $10. They also fail to regularly screen for liver cancer in known chronic cases, even though one in four patients with chronic hepatitis B has a 25 percent risk of dying from liver cancer or liver cirrhosis with liver failure, Dr. So says. Seeking answersThe liver specialist said my liver enzymes were fine, and that I had nothing to worry about. He said I wasn’t acute or chronic. This did not make sense to me. Meanwhile, the hepatitis B listserv I was on urged me to push my doctor to do more specific tests and take a liver ultrasound to see if I had liver cancer. Armed with research from the Asian Liver Center, I wrote a detailed letter to my HMO about HBV in Asian Americans and how I was in my 30s and needed to be screened. I then got to see a top liver specialist who happened to be Asian. He ordered an ultrasound and more detailed blood tests that could tell me my viral count. Fortunately, my ultrasound came back normal, and my viral count was very low. My specialist said I was considered an asymptomatic chronic carrier, for now. He advised me to go on living as I had, avoid alcohol and get the hepatitis vaccine to protect my liver. Also every six months, I have to go for blood tests to screen for liver cancer and every year I need to have a liver ultrasound. My specialist guessed that because I was Asian, I got the virus from my mother during birth or during childhood playing with friends. Since I had hepatitis B as an adult, the chances are that I got it as a child because children are less able to develop antibodies. In fact, the doctor said, 90 percent of children become chronic with HBV and don’t develop symptoms until much later. The best way to live with hepatitis B is to treat it early and aggressively. If needed, experts say, there are medications and/or shots you can take which can prevent further liver damage. Dr. Misra advises carriers “to consult a doctor — GI physician or hepatologist — experienced in treating this illness … not everyone can manage this illness. Join a support group, read about the illness on the Internet or buy books; being informed can save your life.” Living with hepatitis bThrough my medical journey with hepatitis B, I learned that doctors aren’t always knowledgeable, especially with diseases that are specific to ethnic communities. I went from having the “sexual kind” of hepatitis B to a possible mother- to-child transmission. But in reality, one should not fixate on how they got it, but concentrate more on managing it. “Every year I see patients in their 30s with liver cancer caused by chronic hepatitis B. Even though you do not drink or smoke, you exercise regularly and have never been sick in your life, it does not mean you do not have chronic hepatitis B,” Dr. So cautions. Dr. Misra tells the story of a 32-year-old, South Asian man whom he diagnosed with hepatitis B. The man neglected to monitor his disease or get checkups. Five years later he returned to Misra, vomiting blood. He died a week later of advanced cirrhosis of the liver because of hepatitis B. The woman he contracted HBV from had died of liver cancer two years earlier. “HBV and the liver cirrhosis and cancer it causes, is totally preventable,” Dr. So says. “Just imagine the public outcry if we [let people know that] we discovered and licensed an HIV vaccine 25 years ago, and we are not giving it! We need to raise awareness to rally the necessary resources to act now and stop HBV and liver cancer. No one should die from HBV.” Dr. So encourages everyone to take a one-time blood test for hepatitis B, and if you are not protected, protect yourself for life with the vaccine. “Even if you test positive for chronic HBV, with appropriate monitoring and treatment you can still lead a normal life.” I look forward to that. For more information:The Asian Liver Center at Stanford University Hepatitis B Foundation Centers for Disease Control and Prevention Hepatitis B Information and Support Listserv “The First Year — Hepatitis B, an Essential Guide for the Newly Diagnosed” |
