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  • Hepatitis B Foundation launches the first global registry of discrimination against people living with hepatitis B

    The online survey’s results will be shared with policymakers, scholars and the public. Doylestown, Pa., May 13, 2021 – People globally who are living with hepatitis B often experience discrimination in variety of ways, including denial of access to employment and education, even in the U.S., and an American nonprofit organization has launched the world’s first initiative to track and analyze that discrimination. The Hepatitis B Foundation is launching the Hepatitis B Discrimination Registry, which will be a permanent and sophisticated database, with a worldwide communications campaign to encourage people living with the serious liver disease to share their stories. The Registry will allow people around the world to confidentially document their hepatitis B related discrimination experiences anonymously. Chari Cohen, DrPH, MPH, senior vice president of the Hepatitis B Foundation, said the primary means for collecting patients’ accounts will be the Foundation's brief online survey, which will be supplemented over time with patient interviews. “We hope this registry will provide us with the much-needed documentation to demonstrate that discrimination is a significant human rights violation for those living with hepatitis B that impacts all aspects of life,” Dr. Cohen said. “To our knowledge, no worldwide discrimination registry exists for individuals living with hepatitis B, and we intend to fill this gap.” Along with asking people living with hepatitis B to complete the survey, the Foundation is requesting that their families, health care providers, advocates, government leaders, other nonprofit organizations and academia to help raise awareness about the new registry, particularly in regions with high infection rates. The Hepatitis B Foundation has successfully worked to improve protections against discrimination in the U.S., such as winning inclusion of hepatitis B as a protected condition under the Americans with Disabilities Act (ADA) in 2013. The Discrimination Registry’s data will be used to develop policy and advocacy efforts intended to eliminate hepatitis B-related discrimination in the future. The Foundation will share the data through reports that will include high-level information (country-level, type of discrimination, etc.) on what is reported through the Registry. No identifiable information submitted by a person experiencing discrimination will be made available under any circumstances. The Foundation’s public health staff, which regularly publishes articles in scholarly journals, will publish analyses of the data. Discrimination against people living with hepatitis B has been documented in the U.S. and many other countries and anecdotally reported through the Foundation’s social media channels and consultation lines with more frequency. But a greater number of discrimination reports may not mean the incidence is rising, according to Catherine Freeland, MPH, public health program director at the Hepatitis B Foundation, who is leading the Registry project. “The increase is probably because more people are coming out and talking about discrimination, and improved access to technology—more people around the world have access to the internet, social media and email—make it easier for people to find us and share their stories,” Ms. Freeland said. According to the Foundation, discrimination is defined as the unjust, unfair or prejudicial treatment of a person on the grounds of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. People with hepatitis B often face discrimination in many ways: denied employment or education, treated unfairly while at work or in school, not allowed to enter certain countries, not permitted to serve in the military or treated unfairly by health care providers and institutions. About Hepatitis B: The number of adults living in the U.S. who have chronic hepatitis B infection may be as high as 2.4 million, which is nearly three times greater than the federal government’s official estimate, according to a new report by a team of public health experts, scientists and physicians. The report’s authors included Dr. Cohen and Foundation President Timothy M. Block, PhD, Foundation Medical Director Robert Gish, MD, and Foundation Board Member Carol Brosgart, MD. Worldwide, an estimated 292 million people are chronically infected with hepatitis B, less than 10% of infected individuals are diagnosed and an estimated 884,000 people die each year from hepatitis B and related complications such as liver cancer. The Hepatitis B Foundation called for universal hepatitis B screening in the U.S. in 2018, as the only screening strategy that will help us make progress towards the 2030 goal of eliminating hepatitis B in this country. About the Hepatitis B Foundation: The nation’s leading nonprofit organization solely dedicated to finding a cure for hepatitis B and improving the quality of life for those affected worldwide through research, education and patient advocacy, the Hepatitis B Foundation was founded in 1991 and is based in Doylestown, Pa., with an office in Washington, D.C. To learn more, go to www.hepb.org and www.hepb30years.org, read our blog at hepb.org/blog, follow us on Twitter, Instagram and Facebook (@hepbfoundation) or call us at 215-489-4900. To donate, contact Jean Holmes at 215-489-4900 or jean.holmes@hepb.org.

    https://www.hepb.org/news-and-events/news-2/hepatitis-b-foundation-launches-first-global-registry-of-discrimination/
  • Information Générale

    Informations générales  Qu’est-ce que l’hépatite B ? L’hépatite B est la maladie infectieuse du foie la plus répandue au monde. Elle est causée par le virus de l'hépatite B (ou VHB) qui attaque et endommage le foie. Le virus se transmet par le sang, les rapports sexuels non protégés, le partage ou la réutilisation d’aiguilles contaminées, et de la mère à l'enfant pendant la grossesse ou à la naissance. La plupart des adultes infectés sont capables d’éliminer le virus de l’hépatite B sans problème. Cependant, certains adultes, ainsi que la plupart des nourrissons et enfants infectés développent une infection chronique (qui durera toute leur vie). La bonne nouvelle est qu’il existe un vaccin qui protège contre l’hépatite B et de nouveaux médicaments destinés aux personnes déjà infectées pas le virus.  Combien de personnes sont-elles atteintes d’hépatite B ? Dans le monde, deux milliards de personnes (soit une personne sur trois) sont porteuses du virus de l’hépatite B, et 257 millions sont porteuses chroniques (incapables d'éliminer le virus). Chaque année, environ 700 000 personnes meurent de l'hépatite B et de ses complications. Pourquoi l'hépatite B est-elle plus répandue dans certaines régions du monde ? L’hépatite B peut toucher n'importe qui, peu importe son origine ou son âge. Cependant, les personnes qui viennent de régions où elle est la plus répandue (comme en Asie, dans certaines parties de l’Afrique et de l’Amérique du Sud, en Europe de l’Est et au Moyen-Orient) sont beaucoup plus susceptibles de contracter la maladie. L’hépatite B est répandue également chez les Américains originaires (ou dont les parents sont originaires) de ces régions. L'hépatite B est plus répandue dans les régions du monde où il y a beaucoup plus de personnes infectées par le virus. Même si l'hépatite B ne peut pas être considérée comme une maladie d'Asie ou d'Afrique proprement dite, elle touche des centaines de millions de personnes sur ces deux continents. Dans ces régions, il y a donc plus de personnes qui peuvent transmettre le virus de l'hépatite B aux autres. Cela augmente le risque d'infection par le virus. Dans les régions occidentales du monde, le nombre de personnes infectées est moins important, il existe donc un risque d'infection plus faible. Dans les régions où l'hépatite B est répandue, la plupart des personnes contractent le virus à la naissance, de leur mère qui ignore être porteuse du virus. Les enfants en bas âge représentent également une population à risque si, au quotidien, ils sont en contact étroit avec un membre infecté de leur famille. Les bébés et les enfants sont plus susceptibles de développer une hépatite B chronique, car leur système immunitaire a plus de mal à éliminer le virus. Si votre famille ou vous venez d'une région marquée en bleu foncé sur la carte, vous êtes plus susceptible de contracter l'hépatite B et vous devriez contacter votre médecin pour passer un test de dépistage. Pourquoi s'intéresser à l'hépatite B ? L'hépatite B chronique peut entraîner une grave maladie du foie, comme une cirrhose ou un cancer du foie. Il est important de passser un test de dépistage, car un diagnostic précoce de la maladie vous permettra de bénéficier d'un traitement qui pourra vous sauver la vie. De plus, les personnes atteintes peuvent en infecter d'autres. Comme la plupart des personnes touchées par l'hépatite B ignorent qu'elles sont infectées, elles transmettent le virus sans le savoir. Sans dépistage, l'hépatite B peut toucher plusieurs générations d'une même famille et d'une communauté. Selon une idée préconçue, l'hépatite B serait « héréditaire », étant donné que plusieurs générations d'une même famille peuvent être touchées par la maladie. Pourtant, l'hépatite B N'EST PAS une maladie génétique : elle est causée par un virus qui est souvent transmis entre les membres d'une même famille, à la naissance de la mère à l'enfant, ou par le sang, de manière accidentelle. Les familles ont le pouvoir de rompre ce cercle vicieux en passant un test de dépistage, en se faisant vacciner et soigner. Pourquoi l’hépatite B est-elle si dangereuse ? L'hépatite B est dangereuse parce qu'il s'agit d'une infection « silencieuse » : on peut la contracter sans le savoir. La plupart des personnes infectées ne savent pas qu'elles le sont et peuvent transmettre le virus de l'hépatite B à d'autres par leur sang et leurs liquides organiques. Les personnes porteuses d'une infection chronique courent un risque plus élevé de développer une insuffisance hépatique, une cirrhose et/ou un cancer du foie au cours de leur vie. Pendant des années, le virus peut continuer d'attaquer le foie « en silence », sans que l'on s'en aperçoive.  Qu’est-ce que l’hépatite B « aiguë » ? Une infection aiguë peut durer jusqu'à six mois (avec ou sans symptômes). Les personnes infectées peuvent transmettre le virus pendant cette période. Les symptômes d'une infection aiguë peuvent se traduire par une perte d'appétit, des douleurs articulaires et musculaires, une légère fièvre et des maux d'estomac. Bien que la plupart des personnes ne présentent aucun symptôme, ceux-ci peuvent apparaître entre 60 et 150 jours (trois mois en moyenne) après avoir contracté l'infection. Certaines personnes peuvent présenter des symptômes plus graves comme des nausées et des vomissements, un ictère (le jaunissement des yeux et de la peau) et le gonflement de l’estomac. Ces symptômes nécessitent qu'elles consultent un médecin. On peut dépister l'hépatite B par une simple analyse de sang. Si vous avez été diagnostiqué(e) d'une hépatite B aiguë, le médecin vous prescrira un autre test de dépistage six mois plus tard pour déterminer si vous êtes guéri(e) ou si vous avez développé une hépatite B chronique. Il est important que vous protégiez les autres d'une infection éventuelle jusqu'à ce que le médecin confirme l'absence du virus de l'hépatite B dans votre sang. Il est également important que votre partenaire sexuel et que les membres de votre famille (ou les personnes avec qui vous êtes en contact étroit) passent un test de dépistage. S'ils ne sont pas infectés et n'ont pas encore été vaccinés, ils devront commencer la série de vaccins.   Les personnes souffrant d'une hépatite B aiguë ne se verront pas prescrire de traitement particulier. En effet, il n'en existe aucun contre l'hépatite B aiguë, et la plupart des adultes infectés en guérissent tout seuls. Il peut arriver que les personnes présentant des symptômes graves soient hospitalisées. Cette hospitalisation a pour but de traiter les symptômes et de permettre aux patients de se reposer. Une maladie rare et potentiellement mortelle, appelée « hépatite fulminante » peut survenir dans le cas d'une nouvelle infection aiguë. Elle nécessite une prise en charge immédiate, car la personne atteinte risque de développer une insuffisance hépatique soudaine. En cas d'infection aiguë, quelques mesures simples permettent de prendre soin de votre foie : éviter de boire de l'alcool, cesser de fumer ou limiter le tabagisme, manger sainement, éviter les aliments gras et lourds. N'oubliez pas de parler à votre médecin de tout médicament ou complément alimentaire que vous prenez (avec ou sans ordonnance) pour vous assurer qu'ils ne présentent aucun danger pour votre foie. C'est l'occasion de poser toutes les questions que vous pourriez avoir. La prise de vitamines et de compléments alimentaires ne vous permettra pas de guérir plus facilement, elle pourrait même faire plus de mal que de bien à votre foie. N'oubliez pas de vous présenter à toutes les analyses de sang supplémentaires prescrites par votre médecin. Elles sont nécessaires pour confirmer la guérison d'une infection aiguë. Qu’est-ce que l’hépatite B chronique ? Les personnes dont le sang contient le virus de l'hépatite B pendant plus de six mois (à compter de la première analyse de sang) sont diagnostiquées d'une infection chronique. Cela signifie que leur système immunitaire n'a pas réussi à éliminer le virus de l'hépatite B qui est toujours présent dans leur sang et leur foie. Il existe des moyens efficaces pour traiter et prendre en charge l'hépatite B chronique mais, malheureusement, il n'existe aucune cure. Si vous êtes porteur (porteuse) d'une infection chronique, le virus restera probablement dans votre sang toute votre vie. Les personnes atteintes d'hépatite B chronique peuvent transmettre le virus, sans le savoir. L'hépatite B chronique peut également entraîner une maladie grave du foie comme une cirrhose ou un cancer du foie. Toutes les personnes porteuses d'une infection chronique ne développeront pas forcément une maladie grave du foie. Elles courent toutefois un risque plus élevé que les personnes non infectées. Le risque de développer une hépatite B chronique est lié à l'âge auquel la personne contracte le virus : 90 % des nouveau-nés et des bébés infectés développeront une hépatite B chronique Jusqu'à 50 % des enfants (de 1 à 5 ans) infectés développeront une hépatite B chronique 5 à 10 % des adultes infectés développeront une hépatite B chronique (dont 90 % guériront) La nouvelle d'être porteur ou porteuse d'une infection chronique peut être dévastatrice. En effet, comme la plupart des personnes atteintes ne présentent aucun symptôme et que leur diagnostic peut survenir des décennies après l'exposition initiale au virus de l'hépatite B, ce diagnostic peut être bouleversant. La bonne nouvelle est que la plupart des personnes atteintes d'hépatite B chronique peuvent s'attendre à vivre une longue vie en bonne santé. Les femmes enceintes infectées peuvent transmettre le virus à leur bébé à la naissance. Comme le risque de contracter une infection chronique à la naissance est élevé, l'Organisation mondiale de la Santé (OMS) et les Centers for Disease Control and Prevention (CDC) des États-Unis recommandent l'administration du premier vaccin contre l'hépatite B à tous les nouveau-nés dans les 12 à 24 heures après leur naissance. Si vous êtes enceinte et savez que vous êtes infectée, vous pouvez vous assurer que votre bébé reçoive son premier vaccin contre l'hépatite B dans 12 à 24 heures après sa naissance ! Bien qu'il n'existe pas de cure contre l'infection chronique par le virus de l'hépatite B, des traitements mécamenteux efficaces sont disponibles qui permettent de contrôler le virus de l'hépatite B et de l'empêcher d'endommager le foie. De nouveaux médicaments prometteurs sont actuellement en phase de recherche. Ils pourraient apporter une cure dans un avenir rapproché. Même si le risque de développer une maladie grave du foie ou un cancer du foie est plus important chez les personnes atteintes d'hépatite B chronique que pour celles qui ne sont pas infectées, quelques mesures simples permettent de réduire ce risque. Prévoyez une consultation tous les six mois (ou, au minimum, une fois par an) avec un hépatologue (médecin spécialisé dans les maladies du foie) ou un médecin expérimenté en matière d'hépatite B pour faire examiner l'état de votre foie. Demandez à votre médecin si un traitement contre l'hépatite B chronique peut être utile dans votre cas afin de prévenir une maladie grave du foie ou un cancer du foie. Assurez-vous que votre médecin vous fasse passer un test de dépistage du cancer du foie lors de vos consultations régulières, car un dépistage précoce vous offre plus de choix de traitement et une vie plus longue. Évitez ou limitez la consommation d'alcool et le tabagisme, car les deux sont très nocifs pour le foie. Mangez sainement en privilégiant les légumes, car les aliments gras et frits abîment le foie. Que signifie être « porteur chronique » ? Les personnes souffrant d'une infection chronique sont des « porteurs chroniques » du virus de l'hépatite B. Être « porteur chronique » signifie que vous avez une infection chronique, que vous pouvez transmettre le virus de l'hépatite B aux autres, et que vous devez être suivi(e) par un médecin. Existe-t-il une cure contre l'hépatite B ? La plupart des adultes guérissent de leur infection tout seuls, sans avoir besoin de traitement. Il n'existe actuellement aucune cure contre l'hépatite B chronique, ni pour les adultes, ni pour les enfants ou les nouveau-nés. La bonne nouvelle est qu'il existe des traitements qui, en ralentissant le virus, peuvent contribuer à ralentir la progression de la maladie du foie chez les personnes porteuses d'une infection chronique. Moins le virus de l'hépatite B est produit, moins le foie est abîmé. Grâce à la recherche médicale prometteuse, il y a de l'espoir qu'une cure contre l'hépatite B chronique soit découverte dans un avenir proche. Rendez-vous sur Drug Watch (observatoire des médicaments) pour y trouver une liste de médicaments prometteurs en cours de développement. Quels sont les choix de traitement ? Dans le cas d'une infection aiguë, le seul traitement est généralement le repos et un traitement d'appoint contre les symptômes. Dans le cas d'une hépatite B chronique, plusieurs traitements existent. Il est important de comprendre que toutes les personnes atteintes d'hépatite B chronique n'ont pas forcément besoin de traitement. Votre médecin vous aidera à déterminer si vous avez besoin de prendre des médicaments ou s'il est suffisant de surveiller votre état de santé. Il existe de nombreux médicaments antiviraux capables de ralentir ou d'empêcher le virus de l'hépatite B de se répliquer, ce qui réduit l'inflammation et les dommages au foie. Ces antiviraux sont administrés sous forme de comprimé une fois par jour pendant au moins un an, souvent plus longtemps. Il existe six antiviraux homologués par la Food and Drug Administration (FDA). Seuls trois antiviraux « de première ligne » sont préconisés : ténofovir disoproxil (Viread/TDF), ténofovir alafénamide (Vemlidy/TAF) et entécavir (Baraclude). Les antiviraux de première ligne sont préconisés parce qu'ils sont plus sûrs et plus efficaces. D'autres choix s'offrent à ceux qui ne répondent pas ou qui n'ont pas accès aux traitements antiviraux de première ligne : telbivudine (Tyzeka, Sebivo), adéfovir dipivoxil (Hepsera) et lamivudine (Epivir-HBV, Zeffix, Heptodin). Bien que la FDA ait homologué ces antiviraux pour le traitement de l'hépatite B chronique, il ne s'agit pas d'une cure complète. Ils peuvent cependant réduire considérablement le risque de développer des lésions au foie et un cancer au foie. Un traitement antiviral n'est pas à prendre à la légère. C'est la raison pour laquelle un bilan complet réalisé par un médecin expérimenté est crucial avant de commencer le traitement contre l'hépatite B chronique. Il existe également des médicaments immunomodulateurs qui renforcent le système immunitaire afin d'aider à contrôler le virus de l'hépatite B. Ils sont administrés sous forme d'injections sur une période allant de six mois à un an. Parmi les immunomodulateurs les plus couramment prescrits figurent l'interféron alfa-2b (Intron A) et l'interféron pégylé (Pegasys). Votre médecin devra discuter avec vous des choix de traitement possibles avant de décider, le cas échéant, lequel est le mieux adapté à votre état. Chez de nombreuses personnes, ces médicaments vont diminuer ou arrêter le virus de l'hépatite B. Ces personnes se sentent mieux après quelques mois parce que les médicaments ralentissent, voire inversent les dommages hépatiques causés par le virus, s'ils sont pris à long terme. Pour obtenir la liste complète des médicaments homologués par la FDA et des autres médicaments prometteurs en cours de développement pour combattre l'hépatite B, rendez-vous sur Drug Watch (observatoire des médicaments). General Information What is hepatitis B? Hepatitis B is the world's most common liver infection. It is caused by the hepatitis B virus (HBV), which attacks and injures the liver. It is transmitted through blood, unprotected sex, shared or re-used needles, and from an infected mother to her newborn baby during pregnancy or delivery. Most infected adults are able to get rid of the hepatitis B virus without any problems. However, some adults and most infected babies and children are unable to get rid of the virus and will develop chronic (life-long) infection. The good news is that there is a safe vaccine to prevent a hepatitis B infection and new treatments for those already infected with hepatitis B.  How many people are affected by hepatitis B? Worldwide, 2 billion people (1 out of 3 people) have been infected with hepatitis B; and 257 million people are chronically infected (which means they are unable to get rid of the virus). An estimated 700,000 people die each year from hepatitis B and its complications. Why is hepatitis B more common in some parts of the world? Hepatitis B can infect any person of any age or ethnicity, but people from parts of the world where hepatitis B is common, such as Asia, parts of Africa and South America, Eastern Europe, and the Middle East, are at much higher risk for getting infected. Hepatitis B is also common among Americans who were born (or whose parents were born) in these regions. Hepatitis B is more common in certain regions of the world because there are so many more people already infected with hepatitis B in these regions. Although hepatitis B is not an "Asian disease" or an “African disease,” it affects hundreds of millions of people from these regions – so there are more people who can pass the hepatitis B virus on to others. This increases the risk that you could get infected. Since there is a smaller number of Westerners who are infected, this group has a lower risk of infection. In regions where hepatitis B is common, people are usually infected as newborns - from a mother who unknowingly passes the virus to her baby during delivery. Young children are also at risk if they live in close daily contact with an infected family member. Babies and children are more likely to develop a chronic hepatitis B infection because their young immune systems have trouble getting rid of the virus. If you, or your family, is from an area of the map that is darker blue, you might be at greater risk for hepatitis B infection and should talk to a doctor about getting tested. Why should I be concerned about hepatitis B? Chronic hepatitis B can lead to serious liver disease such as cirrhosis or liver cancer. It's important to get tested because early diagnosis can lead to early treatment which can save your life. Also, people who are infected can spread the virus to others. Since most people don't know they are infected, they are unknowingly spreading it to many other people. If people are not tested, hepatitis B can pass through several generations in one family and throughout the community. One common myth is that hepatitis B can be "inherited" since several generations in one family may be infected. But hepatitis B is NOT a genetic disease -- hepatitis B is caused by a virus, which is often transmitted among family members due to mother-to-child transmission or accidental household exposure to blood. Families can break the cycle of hepatitis B infection by getting tested, vaccinated and treated. Why is hepatitis B so dangerous? Hepatitis B is dangerous because it is a “silent infection” that can infect people without them knowing it. Most people who are infected with hepatitis B are unaware of their infection and can unknowingly pass the virus to others through their blood and infected bodily fluids. For those who become chronically infected, there is an increased risk of developing liver failure, cirrhosis and/or liver cancer later in life. The virus can quietly and continuously attack the liver over many years without being detected.  What is acute hepatitis B? An acute hepatitis B infection may last up to six months (with or without symptoms) and infected persons are able to pass the virus to others during this time. Symptoms of an acute infection may include loss of appetite, joint and muscle pain, low-grade fever, and possible stomach pain. Although most people do not experience symptoms, they can appear 60-150 days after infection, with the average being 3 months. Some people may experience more severe symptoms such as nausea, vomiting, jaundice (yellowing of the eyes and skin), or a bloated stomach that may cause them to see a health care provider. A simple blood test can tell a person if the hepatitis B virus is in their blood. If you have been diagnosed with acute hepatitis B, the doctor will need to test your blood again in 6 months to figure out if you have recovered, or if you have developed a chronic hepatitis B infection. Until your health care provider confirms that your blood test shows that there is no more hepatitis B virus in your blood, it is important to protect others from a possible infection. It is also important to have your sexual partner(s) and family members (or those you live in close household contact with) tested for hepatitis B. If they have not been infected – and have not received the hepatitis B vaccine – then they should start the hepatitis B vaccine series.   People who have acute hepatitis B are not prescribed specific hepatitis B treatment – there is no treatment that will get rid of an acute hepatitis B infection, and most people infected as adults recover on their own. Sometimes, a person with severe symptoms may be hospitalized for general support. Rest and managing symptoms are the primary goals of this medical care. A rare, life-threatening condition called “fulminant hepatitis” can occur with a new acute infection and requires immediate, urgent medical attention since a person can go into sudden liver failure. Simple tips for taking care of your liver during an acute hepatitis B infection are to avoid alcohol, stop or limit smoking, eat healthy foods, avoid greasy or fatty foods, and talk to your health care provider about any medications you are taking (prescriptions, over-the-counter medications, vitamins or herbal supplements) to make sure they are safe for your liver. This is a good time to ask any other questions you may have. The use of vitamins and liver health supplements will likely not assist your recovery and may actually cause more harm than good to the liver. Be sure to follow-up with your health care provider for any additional blood tests that are needed to confirm your recovery from an acute infection. What is chronic hepatitis B? People who test positive for the hepatitis B virus for more than six months (after their first blood test result) are diagnosed as having a chronic infection. This means their immune system was not able to get rid of the hepatitis B virus and it still remains in their blood and liver. There are effective ways to treat and manage a chronic infection, but there is no cure. If you are chronically infected, the virus will likely remain in your blood for the rest of your life. People who have chronic hepatitis B can unknowingly pass the virus on to others. Chronic hepatitis B can also lead to serious liver diseases, such as cirrhosis or liver cancer. Not every person who is chronically infected will develop serious liver disease. However, they have a greater chance than someone who is not infected. The risk of developing a chronic hepatitis B infection is related to the age at which one first becomes infected with the hepatitis B virus: 90% of infected newborns and babies will develop a chronic hepatitis B infection Up to 50% of infected children (1-5 years) will develop a chronic hepatitis B infection 5-10% of infected adults will develop a chronic hepatitis B infection (that is, 90% will recover) Learning that you have a chronic hepatitis B infection can be very upsetting. Because most people do not have symptoms and can be diagnosed decades after their initial exposure to the hepatitis B virus, it can be a shock and a surprise to be diagnosed with a chronic hepatitis B infection. The good news is that most people with chronic hepatitis B should expect to live a long and healthy life. Infected pregnant women can pass the virus to their newborns during childbirth. Therefore, since the risk of newborns becoming chronically infected at birth is high, both the World Health Organization (WHO) and the U.S. Centers for Disease Control and Prevention (CDC) recommend that all infants receive the first dose of the hepatitis B vaccine within 12-24 hours after birth. If you are pregnant and you know that you are infected, you can make sure that your baby gets the first dose of the hepatitis B vaccine within 12-24 hours after delivery! While there is no cure for chronic hepatitis B infection, there are effective drug therapies that can control the hepatitis B virus and stop it from damaging the liver. There are also promising new drugs in the research phase that could provide a cure in the very near future. Although the risk of developing a serious liver disease or liver cancer is higher for those living with chronic hepatitis B than those who are not infected, there are still many simple things a person can do to help reduce their risk. Schedule regular visits every six months (or at least every year) with a liver specialist or a health care provider who is knowledgeable about hepatitis B so they can monitor the health of your liver. Talk to your health care provider about whether treatment for your chronic hepatitis B infection would be helpful in preventing serious liver disease or liver cancer. Make sure that your health care provider screens you for liver cancer during your regular visits since early detection equals more treatment options and a longer life. Avoid or limit alcohol and smoking since both cause a lot of stress to your liver. Eat a healthy diet with lots of vegetables since fried, greasy foods are hard on your liver. What does it mean to be a “chronic carrier”? When someone has a chronic hepatitis B infection, their doctor may refer to them as being a “chronic carrier.” Being a “chronic carrier” means that you have a chronic hepatitis B infection, can pass the virus on to others, and you should be managed by a doctor for your infection. Is there a cure for hepatitis B? Most adults will recover from an acute infection on their own without the need for medication. For adults, children and infants who develop a chronic hepatitis B infection, there is currently no cure. But the good news is there are treatments that can help slow the progression of liver disease in chronically infected persons by slowing down the virus. If there is less hepatitis B virus being produced, then there is less damage being done to the liver. With all of the new exciting research, there is great hope that a cure will be found for chronic hepatitis B in the near future. Visit our Drug Watch for a list of other promising drugs in development. What options are there to treat my hepatitis B? For an acute infection, there is generally no treatment other than rest and supportive measures to manage any symptoms. For chronic hepatitis B, there are several treatments available. It is important to understand that not everyone with chronic hepatitis B needs treatment. Your doctor will help you decide if you need medication or if you can wait and monitor your condition. There are several antiviral medications that slow down or stop the hepatitis B virus from replicating, which reduces the inflammation and damage to the liver. These antivirals are taken as a pill once a day for at least 1 year, usually longer. There are 6 U.S. FDA approved antivirals, but only three “first-line” antivirals are recommended: tenofovir disoproxil (Viread/TDF), tenofovir alafenamide (Vemlidy/TAF) and entecavir (Baraclude). First-line antivirals are recommended because they are safer and most effective. For people who do not respond to, or have access to, the first-line antiviral treatments, other options are available: telbivudine (Tyzeka, Sebivo), adefovir dipivoxil (Hepsera), and lamivudine (Epivir-HBV, Zeffix, Heptodin). Although the FDA has approved these antivirals for chronic hepatitis B, they do not provide a complete cure. They can, however, greatly decrease the risk of developing liver damage and liver cancer. Antivirals are not meant to be stopped and started, which is why a thorough evaluation by a knowledgeable doctor is so important before beginning treatment for chronic hepatitis B. There are also immunomodulator drugs that boost the immune system to help control the hepatitis B virus. They are given as injections over 6 months to 1 year. The most commonly prescribed include interferon alfa-2b (Intron A) and pegylated interferon (Pegasys). You and your doctor will need to discuss the treatment options before deciding which one, if any, is best for you. For many people, these medications will decrease or stop the hepatitis B virus. This results in patients feeling better within a few months because liver damage from the virus is slowed down, or even reversed in some cases, when taken long-term. For a complete list of FDA approved drugs and other promising drugs in development for hepatitis B, visit our Drug Watch.

    https://www.hepb.org/languages/french/general-information/
  • 与乙型肝炎共存 我会从乙型肝炎感染中恢复吗?大多数刚受感染的健康成年人会毫无问题地恢复。但婴儿和幼儿可能无法成功地消除该病毒。 成年人——90% 的健康成年人会消除该病毒,并毫无问题地恢复;10% 会发展为慢性乙型肝炎。  幼儿——多达 50% 的 1-5 岁受感染幼儿会出现慢性乙型肝炎病毒。 婴儿——90% 会变为慢性感染;仅 10% 将能够消除该病毒。 “急性”和“慢性”乙型肝炎感染有什么区别?接触病毒后最初 6 个月期间的乙型肝炎病毒感染被认为是“急性”感染。这是从乙型肝炎感染中恢复的平均时间。 6 个月后,如果您乙型肝炎病毒测试仍然呈阳性 (HBsAg+),则您被认为患有“慢性”乙型肝炎感染,它可以持续一生。 如果我患有急性乙型肝炎,我会生病吗?乙型肝炎被认为是一种“无声感染”,因为它通常不引起任何症状。大多数人感到健康而且不知道自己已受感染,这意味着他们会不知不觉地将病毒传给它人。其他人可能有轻微症状,比如误以为由流感导致的发烧、疲劳、关节或肌肉疼痛,或者食欲减退。 不常见但更严重的症状包括严重恶心和呕吐,眼睛和皮肤发黄(称为“黄疸”)和胃部肿胀——这些症状需要立即就医,患者可能需要住院。 当我已从“急性”乙型肝炎感染中恢复,我会如何知道?一旦您的医生通过验血已确认您已从体内消除病毒,并产生保护性抗体 (HBsAb+),您就会免于任何未来的乙型肝炎感染,并且不再对其他人有传染性。 如果我被诊断出患有慢性乙型肝炎,我应该怎么办?如果您乙型肝炎病毒测试呈阳性长于 6 个月,这表明您患有慢性乙型肝炎感染。您应该与熟悉乙型肝炎的肝脏病学家(肝脏专家)、胃肠病医师或家庭医生预约。医生会嘱咐验血,可能还会嘱咐去做肝脏超声波检查,以评估乙型肝炎病毒在您体内的活跃程度,并监测您的肝脏的健康。您的医生很可能希望每年至少见到您一次或两次,以监测您的乙型肝炎,并确定您是否会从治疗中获益。 所有慢性感染者都应该至少一年看一次(或更频繁地)医生,进行常规的医疗随访护理,无论他们是否开始治疗。即使病毒处于较不活跃的阶段,极少或没有发生任何损伤,但这会随时间发生改变,这也正是定期监测是如此重要的缘由。 大多数慢性乙型肝炎感染者有望活得健康长久。一旦您被诊断为慢性乙型肝炎,病毒可能在您的血液和肝脏中终生停留。重要的是要知道您可以将病毒传给他人,即使您未感觉不舒服。这就是您要确保所有亲密的家庭接触者和性伴侣都接种乙型肝炎疫苗是如此重要的缘由。 哪些测试会用来监测我的乙型肝炎?医生用来监测乙型肝炎的常见测试包括乙型肝炎血检、肝功能测试(ALT、AST)、乙型肝炎病毒 e 抗原 (HBeAg)、乙型肝炎 e 抗体 (HBeAb)、乙型肝炎 DNA 定量(病毒载量)和肝脏成像研究(超声、FibroScan [瞬时弹性成像] 或 CT 扫描)。 有针对慢性乙型肝炎的治愈方法吗?目前还没有针对慢性乙型肝炎的治愈方法,但好消息是,一些治疗方法可以通过使病毒减速来帮助减缓慢性感染者的肝病进展。如果产生的乙型肝炎病毒较少,那么对肝脏的损伤就会较少。有时这些药物甚至可以清除病毒,尽管这不常见。 凭着所有令人振奋的新研究,有很大希望在不久的将来找到慢性乙型肝炎的治愈方法。访问我们的 Drug Watch(药品观察 获取研发中的其他有前景药物的清单。 有任何已批准的药物来治疗慢性乙型肝炎吗?目前针对乙型肝炎的治疗分为两种一般类别:抗病毒药物和免疫调节剂: 抗病毒药物——这些药物可以减缓或阻止乙型肝炎病毒,从而减少肝脏炎症和损伤。这些药物为丸剂,每天服用一次,疗程至少 1 年,通常更久。目前有 6 种经美国 FDA 批准的抗病毒药物,但是只有三种一线抗病毒药物是获得推荐的治疗方法:替诺福韦酯(Viread/TDF)、替诺福韦艾拉酚胺(Vemlidy/TAF)和恩替卡韦(Baraclude)。推荐使用一线抗病毒药物,因为它们更安全、最有效。与旧的抗病毒药物相比,它们还具有更好的耐药性,这意味着当它们按规定服用时,发生突变和耐药性的可能性更小。耐药性增加使得治疗和控制病毒更加困难。 免疫调节药——这些药物可以增强免疫系统,以帮助控制乙型肝炎病毒。它们在 6 个月至 1 年的时间里以注射方式给药。最常见的处方药物包括干扰素 alfa-2b (Intron A) 和聚乙二醇干扰素 (Pegasys)。这是对同时感染肝炎三角区的患者的唯一推荐治疗方法。 这些药物为慢性乙型肝炎提供了“治愈方法”吗?
虽然它们不能提供彻底治愈,但目前的药物会使病毒减速,并降低日后患上更严重肝病的风险。这导致病人在数月内感觉良好,这是因为病毒对肝脏的损伤有所减缓,或者经长期服用后甚至在某些情况下出现逆转。抗病毒药物不能随意停止和开始,这就是在开始治疗慢性乙型肝炎病毒 (HBV) 之前需要由知识渊博的医生进行彻底评估是如此重要的缘由。 如果我患有慢性乙型肝炎感染,我应该服用药物吗?重要的是要了解并非每位慢性乙型肝炎患者都需要服药。您应该与您的医生谈谈您是否是药物疗法的良好候选人。无论您和您的医生决定您是否应该开始治疗,您都应该定期去肝脏专家或在乙型肝炎方面知识渊博的医生处看诊。 针对我的乙型肝炎感染,服用草药或补充剂安全吗?许多人都有兴趣使用草药或补充剂来增强他们的免疫系统和帮助他们的肝脏。问题在于,没有对生产这些产品的公司进行监管,这意味着没有严格的安全性或纯度检测。因此,瓶与瓶之间的草药或维生素补充剂的质量可能不同。另外,有些草药可能会干扰您用于治疗乙型肝炎或其他病情的处方药;甚至有些实际上会损伤您的肝脏。这些草药不会治愈慢性乙型肝炎感染。 有许多公司在互联网上和通过社交媒体对他们的产品做出虚假承诺。Facebook 上的在线索赔和患者感言是假的,并被用来欺骗人们购买昂贵的草药和补充剂。记住,如果它好得令人难以置信,那么它很可能不是真的。以下是关于药草和替代药物的可靠信息来源。这些信息基于科学证据,而不是虚假承诺。检查您的草药或补充剂中的活性成分是否是真实的并且对您的肝脏安全。最重要的事是要保护您的肝脏免受任何额外伤害或损伤。 对于那些慢性乙型肝炎患者,有哪些健康的肝脏提示?慢性乙型肝炎感染患者可能需要或可能不需要药物治疗。但是,患者可以做很多其他的事情来保护他们的肝脏和改善他们的健康。以下是我们可以从今天开始的十大健康选择的列表! 安排与您的肝脏专家或卫生保健提供者的定期就诊,以掌握您的健康和您肝脏的健康情况。 接种甲肝疫苗,以保护自己远离攻击肝脏的其他病毒。 避免饮酒和吸烟,因为两者都会伤害您已经受到乙型肝炎病毒损伤的肝脏。 在开始服用任何草药或维生素补充剂之前,先与您的医生谈谈,因为有些药物可能会干扰您的乙型肝炎处方药物,甚至损伤您的肝脏。 向您的药剂师咨询任何非处方药(如:对乙酰氨基酚、扑热息痛)或非乙型肝炎处方药,之后再服用这些药物,以确保它们对您的肝脏是安全的,因为这些药物许多是通过肝脏处理的。  避免吸入油漆、油漆稀释剂、胶水、家用清洁产品、洗甲水以及其他可能损伤您肝脏的有毒化学物质散发的气味。  健康饮食,食用水果、全谷类、鱼和瘦肉,以及大量蔬菜。尤其是“十字花科蔬菜”——卷心菜、花椰菜、菜花——已被证明有助于保护肝脏对抗周围的化学物质。  避免食用生的或未煮熟的贝类(如蛤蚌、贻贝、牡蛎、扇贝),因为它们可能会被一种叫做创伤弧菌的细菌污染,这种细菌对肝脏非常有害,可能造成巨大损伤。 检查坚果、玉蜀黍、玉米、花生、高粱和小米有无发霉迹象,之后再食用。如果食物储存在潮湿的环境中,并且没有妥善密封,那么霉菌则更有可能是个问题。如果有霉菌,那么这些食物可能会被“黄曲霉毒素”污染,这是已知的肝癌风险因素。 通过吃健康的食物、定期锻炼和获得充足的休息来减轻您的压力。  记住您吃的、喝的、呼吸的、或者通过皮肤吸收的每样东西最终都会由肝脏来过滤。所以,请保护您的肝脏和您的健康! 如果我有乙型肝炎,我可以献血吗? 不能。即使您已经从急性感染中恢复,血库也不会接受任何已接触过乙型肝炎的血液。 Living with Hepatitis B Will I recover from a hepatitis B infection?Most healthy adults who are newly infected will recover without any problems. But babies and young children may not be able to successfully get rid of the virus. Adults – 90% of healthy adults will get rid of the virus and recover without any problems; 10% will develop chronic hepatitis B.  Young Children – Up to 50% of young children between 1 and 5 years who are infected will develop a chronic hepatitis B infection. Infants – 90% will become chronically infected; only 10% will be able to get rid of the virus. What is the difference between an "acute" and a "chronic" hepatitis B infection?A hepatitis B infection is considered to be “acute” during the first 6 months after being exposed to the virus. This is the average amount of time it takes to recover from a hepatitis B infection. If you still test positive for the hepatitis B virus (HBsAg+) after 6 months, you are considered to have a "chronic" hepatitis B infection, which can last a lifetime. Will I become sick if I have acute hepatitis B?Hepatitis B is considered a "silent infection” because it often does not cause any symptoms. Most people feel healthy and do not know they have been infected, which means they can unknowingly pass the virus on to others. Other people may have mild symptoms such as fever, fatigue, joint or muscle pain, or loss of appetite that are mistaken for the flu. Less common but more serious symptoms include severe nausea and vomiting, yellow eyes and skin (called “jaundice”), and a swollen stomach - these symptoms require immediate medical attention and a person may need to be hospitalized. How will I know when I have recovered from an "acute" hepatitis B infection?Once your doctor has confirmed through a blood test that you have gotten rid of the virus from your body and developed the protective antibodies (HBsAb+), you will be protected from any future hepatitis B infection and are no longer contagious to others. What should I do if I am diagnosed with chronic hepatitis B?If you test positive for the hepatitis B virus for longer than 6 months, this indicates that you have a chronic hepatitis B infection. You should make an appointment with a hepatologist (liver specialist), gastroenterologist, or family doctor who is familiar with hepatitis B. The doctor will order blood tests and possibly a liver ultrasound to evaluate how active the hepatitis B virus is in your body, and to monitor the health of your liver. Your doctor will probably want to see you at least once or twice a year to monitor your hepatitis B and determine if you would benefit from treatment.All chronically infected people should be seen by their doctor at least once a year (or more frequently) for regular medical follow-up care, whether they start treatment or not. Even if the virus is in a less active phase with little or no damage occurring, this can change with time, which is why regular monitoring is so important. Most people chronically infected with hepatitis B can expect to live long, healthy lives. Once you are diagnosed with chronic hepatitis B, the virus may stay in your blood and liver for a lifetime. It is important to know that you can pass the virus along to others, even if you don’t feel sick. This is why it’s so important that you make sure that all close household contacts and sex partners are vaccinated against hepatitis B. What tests will be used to monitor my hepatitis B?Common tests used by doctors to monitor your hepatitis B include the hepatitis B blood panel, liver function tests (ALT, AST), hepatitis B e-Antigen (HBeAg), hepatitis B e-Antibody (HBeAb), hepatitis B DNA quantification (viral load), and an imaging study of the liver (ultrasound, FibroScan [Transient Elastography] or CT scan). Is there a cure for chronic hepatitis B?Right now, there is no cure for chronic hepatitis B, but the good news is there are treatments that can help slow the progression of liver disease in chronically infected persons by slowing down the virus. If there is less hepatitis B virus being produced, then there is less damage being done to the liver. Sometimes these drugs can even get rid of the virus, although this is not common. With all of the new exciting research, there is great hope that a cure will be found for chronic hepatitis B in the near future. Visit our Drug Watch for a list of other promising drugs in development. Are there any approved drugs to treat chronic hepatitis B?Current treatments for hepatitis B fall into two general categories, antivirals and immune modulators: Antiviral Drugs - These are drugs that slow down or stop the hepatitis B virus, which reduces the inflammation and damage to the liver. These are taken as a pill once a day for at least 1 year, usually longer. There are 6 U.S. FDA approved antivirals, but only three first-line antivirals are recommended treatments: tenofovir disoproxil (Viread/TDF), tenofovir alafenamide (Vemlidy/TAF) and Entecavir (Baraclude). First-line antivirals are recommended because they are safer and most effective. They also have a better resistance profile than older antivirals, which means that when they are taken as prescribed, there is less chance of mutation and resistance. Building resistance makes it harder to treat and control the virus. Immunomodulator Drugs - These are drugs that boost the immune system to help control the hepatitis B virus. They are given as injections over 6 months to 1 year. The most commonly prescribed include interferon alfa-2b (Intron A) and pegylated interferon (Pegasys). This is the only recommended treatment for patients coinfected with hepatitis delta. Do these drugs provide a “cure” for chronic hepatitis B?
Although they do not provide a complete cure, current medications will slow down the virus and decrease the risk of more serious liver disease later in life. This results in patients feeling better within a few months because liver damage from the virus is slowed down, or even reversed in some cases, when taken long-term. Antivirals are not meant to be stopped and started, which is why a thorough evaluation by a knowledgeable doctor is so important before beginning treatment for chronic HBV. If I have a chronic hepatitis B infection, should I be on medication?It is important to understand that not every person with chronic hepatitis B needs to be on medication. You should talk to your doctor about whether you are a good candidate for drug therapy. Whether you and your doctor decide you should start treatment or not, you should be seen regularly by a liver specialist or a doctor knowledgeable about hepatitis B. Is it safe to take herbal remedies or supplements for my hepatitis B infection? Many people are interested in using herbal remedies or supplements to boost their immune systems and help their livers. The problem is that there is no regulation of companies manufacturing these produces, which means there is no rigorous testing for safety or purity. So, the quality of the herbal remedy or vitamin supplement may be different from bottle to bottle. Also, some herbal remedies could interfere with your prescription drugs for hepatitis B or other conditions; some can even actually damage your liver. These herbal remedies will not cure a chronic hepatitis B infection. There are many companies that make false promises on the Internet and through social media about their products. Online claims and patient testimonials on Facebook are fake and are used to trick people into buying expensive herbal remedies and supplements. Remember, if it sounds too good to be true, then it’s probably not true. Below are reliable sources of information about herbs and alternative medicines. This information is based on scientific evidence, not false promises. Check whether the active ingredients in your herbal remedies or supplements are real and safe for your liver. The most important thing is to protect your liver from any additional injury or harm. What healthy liver tips are there for those living with chronic hepatitis B?People living with chronic hepatitis B infection may or may not need drug treatment. But there are many other things patients can do to protect their liver and improve their health. Below is our list of the top 10 healthy choices that can be started today! Schedule regular visits with your liver specialist or health care provider to stay on top of your health and the health of your liver. Get the Hepatitis A vaccine to protect yourself from another virus that attacks the liver. Avoid drinking alcohol and smoking since both will hurt your liver, which is already being injured by the hepatitis B virus. Talk to your provider before starting any herbal remedies or vitamin supplements because some could interfere with your prescribed hepatitis B drugs or even damage your liver. Check with your pharmacist about any over-the-counter drugs (e.g. acetaminophen, paracetamol) or non-hepatitis B prescription drugs before taking them to make sure they are safe for your liver since many of these drugs are processed through your liver.  Avoid inhaling fumes from paint, paint thinners, glue, household cleaning products, nail polish removers, and other potentially toxic chemicals that could damage your liver.  Eat a healthy diet of fruit, whole grains, fish and lean meats, and lot of vegetables. “Cruciferous vegetables” in particular -- cabbage, broccoli, cauliflower -- have been shown to help protect the liver against environmental chemicals.  Avoid eating raw or undercooked shellfish (e.g. clams, mussels, oysters, scallops) because they could be contaminated with bacteria called Vibrio vulnificus, which is very toxic to the liver and could cause a lot of damage. Check for signs of mold on nuts, maize, corn, groundnut, sorghum, and millet before using these foods. Mold is more likely to be a problem if food is stored in damp conditions and not properly sealed. If there is mold, then the food could be contaminated by “aflatoxins,” which are a known risk factor for liver cancer. Reduce your stress levels by eating healthy foods, exercising regularly, and getting plenty of rest. Keep in mind everything you eat, drink, breathe, or absorb through the skin is eventually filtered by the liver. So, protect your liver and your health! Can I donate blood if I have hepatitis B? No. The blood bank will not accept any blood that has been exposed to hepatitis B, even if you have recovered from an acute infection.  

    https://www.hepb.org/languages/chinese-simplified/livingwithhepb/
  • Patient Stories

    I am a 37-year-old, single, gay, white male living in Washington, DC. In November of 2005 I woke one morning to discover a hint of yellow in my eyes. I went to my doctor a couple of days later, by which time my skin had started turning yellow. My doctor took blood samples for testing and they came back positive for Hepatitis B. Over the next few weeks I got sicker and sicker...and turned a horrible shade of yellow. I have never felt so sick in my life. The rest of 2005 was spent at home, sleeping much of the day. In addition to rest, I made some radical changes to my diet to help with digestion and ease the strain on my liver. Of course the first thing to go was the alcohol. In consultation with a nutritionist friend of mine, and my doctor of course, I gave up eating all meats and eventually gave up dairy. I ate a lot of vegetables, soups, whole grains/pasta, brown rice, oatmeal, tofu, soy, etc. I stopped drinking anything with caffeine and limited my sugar intake, including not overdoing it on too much fruit initially. Even though I gave up a lot, I was eating more frequently and was careful to make sure I was eating a balanced diet. I had never eaten so healthy in my life. Eventually I ended up losing 60 pounds just from changing my diet. But I never felt like I was starving or that I had deprived myself...it was just a new outlook on nutrition. For years I have tried many different diets, but none was nearly effective as this. In addition to the dietary changes, I also started taking acidophilus, plant enzymes, milk thistle, and vitamin C with each meal. When I was first diagnosed on November 21, 2005, my bilirubin (total) was 12.0, my AST was 768, and my ALT was 1756. My bilirubin level eventually hit 19.2 and then all my levels started going down by the end of December. In February my bilirubin dropped to .8 and my AST was 101 and ALT 231. By the time June 2006 came around, my AST was 152, my ALT was 311...and my viral load was a staggering 830,000,000...yes, 830 million! Well, I was considered to be chronic and my doctor started me on a combination of Epivir HBV and Hepsera. By the time of my next tests in August 2006, my AST had dropped to 29, ALT dropped to 70, and my viral load went way down to 6,800. All this time, I continued my diligence with nutrition and my diet. By this time I was eating vegan a majority of the time, but not exclusively. I was maintaining my weight loss...and started introducing seafood in my diet. The Epivir HBV and Hepsera were still part of my daily routine. My next tests were in November 2006, when my AST was 18, ALT 16 and viral load had dropped below 100. Also at this time, the tests came back negative for the E-antigen, but I was still also negative for any antibodies. Then came something nothing short of miraculous. Just recently, in February 2007, my test results came back positive for the antibodies...the virus had been eradicated...I was cured! My doctor went on to explain that they look for the antibody level to be above 10...and mine was 884! My AST and ALT levels were normal. As you can imagine, I was thrilled, my doctor was thrilled. Everything I have read confirmed what my doctor told me...this does not happen very often! One-and-a-half years after being diagnosed, and 7 months after starting the Epivir HBV and Hepsera, I was cured. I had been prepared for a lifetime of taking these drugs and closely monitoring the hepatitis to try and prevent any liver damage. But now those two pill bottles just sit in my cupboard as a reminder to me. I am convinced that my diligence with nutrition and diet went a long way to give my liver and my body as much help as possible in fighting this. That, combined with the drugs, and some help from God, have provided me with a miracle. I have maintained the weight loss the entire time (and am trying to lose just a few more pounds to reach a personal goal). As my doctor said, I have eliminated a number of risk factors from my life, such as heart disease, diabetes, etc. I am healthier now than before I was diagnosed with hepatitis B. I have had some alcohol to toast this momentous occasion...and I have a very low tolerance for it now, having abstained for so long! Throughout the last year-and-a-half, I have read many different stories from others dealing with hepatitis B. I wanted to share my story...in hopes that others might find it as helpful and inspiring as I have found those that I have read. I have been a single parent of a wonderful son for 13 years. I always dreamed of adopting a daughter and began the process of adoption a year ago. Because I was requesting an “older child” of five or six, I was enrolled in a special program through my agency for children who may be considered “unadoptable. I conducted an exhaustive research into the issue of adopting “older” children including attachment disorders and the potential for learning issues. I received a referral of a four year old beautiful little red head who looked right at ME from the photograph. I fell immediately in love. Then came “the news.” She was in the special program because she was diagnosed with chronic hepatitis B. I asked my agency caseworker what – exactly – was hepatitis B? She was unable to give much clarity to the situation, so I began another exhaustive research into this disease with which I was only very vaguely familiar. An Internet search led me to many websites and stories that, quite frankly, scared me and dissuaded me from considering becoming this child’s Mommy. But, then, I found the Hepatitis B Foundation. I wrote a frantic e-mail with questions and concerns, which was answered in less than 24 hours with a phone call from the HBF staff. In soothing tones backed by facts and statistics, I was led through the ins-and-outs of hepatitis B. Bottom line: I proceeded with the adoption based on the knowledge that the Hepatitis B Foundation armed me with and I THANK YOU! My daughter is strong, healthy, loving, and a true blessing to my son and me. She has been evaluated by the pediatrician and is scheduled for her first pediatric hepatologist (liver specialist) appointment. Based on the foundation’s advice, I had my son’s blood tested to make sure his hepatitis B vaccine worked, and I also received the vaccination series myself. In fact, my three sisters also received the vaccinations! Am I scared? Yes. But I now know what exactly to be scared of and am confident that I can handle it. (That is, except for the stuff in the coming years inherent in raising a teenage girl!) Potential adoptive parents hear it over and over, “Adoption is a leap of faith.” Children may enter our families with various challenges, learning issues, attachment concerns. So adoptive parents sometimes have to just close their eyes, open their hearts, and leap. I took that leap and adopted a PERFECT little girl who just happens to have chronic hepatitis B. And I wouldn’t trade her for anything!! To the Hepatitis B Foundation, please accept my sincerest gratitude for the resources you shared, the guidance you gave, and for helping me to accept the referral of my beautiful and loved daughter! Sincerely,A Grateful Mom OnsetIn the spring of 1984, I noticed that a beer I was drinking tasted strange. About the same time I began to feel like something was pressing against my stomach. Gradually, I began to lose my appetite and thought, “Uh-oh, I'm coming down with the stomach flu.” This went on for several weeks. My job then was in a Texas institution for the mentally retarded where I worked as a nurse. My work routines began to seem burdensome and small things irritated me. Each night when I got home I was just beat. In June of that year, when I had just turned 54, I scheduled a minor surgical procedure for a Friday, figuring that I’d be completely recovered and ready to go back to work on Monday. When Monday came and I hadn’t recovered, I knew something was really wrong because I was a healthy person and used to bouncing back quickly. I went to see my doctor who thought I might have an ulcer. He asked for a urine specimen and I noticed how brown it looked. The next morning, my doctor called and gave me the news: I had tested positive for hepatitis B. During report time at work, I told my head nurse and fellow nurses. The atmosphere in that room changed instantly. The nurses visibly shrank from me as though I were a leper and my head nurse, looking grave, said that I’d probably be off work for a long time. It was surprising how little we knew about the disease. IllnessMy head nurse was right. It was fall before I was able to even consider going back to work. Despite the initial diagnosis of a “mild” hepatitis B case, I was literally unconscious for a good part ofmany days. One day when we were in the grocery store, all my energy suddenly vanished, as though a plug had been pulled and it had all drained out. And so it went, week after week after week. I felt I was fighting some unseen enemy that was bent on my destruction. The uncertainty of never knowing when it would strike sapped my confidence horribly. It was like living at the end of a leash of indeterminate length so that I never knew when I’d reach the end and be unmercifully jerked back again.Over time, through repeated bad experiences, I learned to store up energy by staying in bed a certain length of time before doing anything, and then to rest up afterwards. Normally, a person gets that “second wind” when the liver releases stored glucose into the bloodstream. That’s what gives us stamina. With a damaged liver we don’t have that reserve. When it’s gone, it’s gone. RecoveryThe onset of hepatitis B, according to my medical dictionary, is described as “insidious” meaning “coming on gradually or almost imperceptibly”. That definition could describe my recovery as well. It was two steps forward and one step back for about two years. In October I returned to work. At first, I only worked a few hours at a time, just long enough to administer all the evening medications. Over the next six weeks or so, I gradually increased the amount of time I spent at work. However, it finally became apparent to me that I just wasn’t up to the job any longer and I resigned at the end of November. In December, my longtime partner Nick and I went to Mexico. We had no reservations, spoke almost no Spanish and sometimes walked long distances carrying our luggage. Despite these hardships, I will never forget this trip, for many reasons, both good and bad.Shortly after the trip, my son’s mother-in-law, who owned the house I was renting, passed away. Instead of leaving her property toher daughter, she put it in a trust fund managed by the bank. The bank then raised my rent 75%, which forced me to move out. Moving, under the best of circumstances, is something I bothdread and abhor. It would have been difficult enough, given my health problems, even if we had just rented another house in town. Instead, Nick and I bought a piece of completely undevelopedproperty 100 miles away. It had no utilities, no buildings, and was far out in the country on a badly rutted road. Only people as naïve as Nick and I would have undertaken such a venture, but that’s justwhat we did. To this day I do not understand how I found the strength to get through the months that followed buying this property. We first bought a trailer (the only house I ever owned) and had it moved out to the property. Living in a trailer was certainly a brand new experience for me. I spent many an anxious hour through storms willing it not to turn over and crush us to death. When I say storms, Imean the most spectacular displays of lightning I’ve ever seen and rains so torrential they literally prearranged the landscape. Despite it all - with many days when I felt so crappy - I loved it there. Big ChancesBy late winter of 1986, all of the romantic walks through fields of waist-high wildflowers, nights of star-gazing and the surreal feeling of living in a western movie were not enough to disguise howdesperate our situation was beginning to be. The money was running out and Nick was spending more and more time with some less-than savory neighbors. When my daughter Valerie and her husband Dwight came to visit us in February, she was frankly worried about my condition but didn’t say so. That spring I crashed. My depression became so acute that in desperation I called the suicide hotline in Austin. This turned out to be one of the best decisions I ever made. I was directed to a place where I was evaluated. Though I cannot nowremember who recommended a liver biopsy or why, I had one done.The diagnosis was “some inflammation” that seemed to be healing. I was told that I had “chronic persistent” hepatitis B, and from what the doctor said, I was given to believe that the condition could gradually resolve over time. There was no treatmentprescribed. I continued to take the vitamin and mineral supplements that I had taken for years, plus herbs that were supposed to be especially beneficial for liver health: dandelion root, tumeric andmilk thistle. Later that month I visited Valerie and Dwight in New York City. While there, we got word that my mother had died and that she had divided all the money evenly between my sister and me. I was frankly surprised that my mother left me anything, but it was a lifesaver. From then on my life began to change dramatically. Moving OnThat summer I saw a notice in the paper about a course in Silva (self) Mind Control that intrigued me. It opened doors for me in bringing my awareness to my unconscious negative thinking and programming and taught me how to meditate. With this newfound power, I decided to embark on yet another career. My nursing days were gone and I was open to something new that better suited my belief in holistic health and medicine. I moved back to Austin and enrolled in a one-year program for massage therapy. This course exposed me to principles of Chinese medicine and to various forms of energywork. It also put me in a community of people who were there for me when my life with Nick began painfully falling apart. From the time I started massage school, I was also getting massage therapy work done myself. It had the effect of letting me out of a cage that had imprisoned me my entire life. My self-confidencesoared. I became increasingly interested in eastern religion and metaphysics. During this time my family considered a move to the West Coast to open a bed and breakfast inn. When Valerie and Dwight bought a house in the Columbia River Gorge of Oregon, I planned to jointhem on the venture, knowing that I could contribute my skills of cooking, gardening and massage. It seemed like a dream come true: being able to work and live with my family. In June 1989, at age 59, I moved to Oregon to manage the house until my family’s arrival. I did not know one soul in Oregon, but the scenery was magnificent. That first summer, I began landscaping theproperty, painting deck furniture and doing more things to fix up my new home than I can list. The following year, Valerie became pregnant after 12 years of marriage. The announcement shocked me to my knees. The dream I was living had come to an end before it began -- my family neverdid move to Oregon after all. RelapseIn June of 1992, Valerie and I took a trip to Washington State while Dwight took care of their toddler at the Oregon house. While we were on that trip, some old familiar symptoms began to reappearand I feared the worst; the hepatitis was coming back. By late summer my liver enzymes were the highest they’d ever been and I was diagnosed with “chronic-active” hepatitis B. By then I was definitely sick. My date book for that time tells a dramaticstory. There were lunch and dinner dates, house guests, massages, After that there was nothing but blank pages. I sat in my chair. That’s all I did. My doctor at the time was a naturopath and an acupuncturist. He told me, “You don’t have to die from this.” This was valuable to hear because my medical books painted a fairly grim picture for chronic active hepatitis. Dr. S. told me that it was very important that I rest, rest, and rest some more. He put me on a very digestible diet and I had acupuncture treatments to balance my liver meridian. When he learned that the root of a native plant had antiviral properties, he told me to take that, too. In October, I arranged to see a gastroenterologist from Portland. He examined me and noted petechia on my upper back and redness of my palms, which he said were signs of some liver damage. Neither he nor any doctor I had seen thought I had cirrhosis. We discussed all the medical options available at the time, including interferon treatment. I decided none of them sounded right for me. For one thing, they were all very expensive, required frequent trips to the doctor, and could cause a worsening of hepatitis once the treatment had ended. He didn’t discourage me from what I wanted to do: continue with my good diet and supplements and manage my energy as carefully as I could. This last bout changed my body. I gained at least fifteen pounds and I could function only half of each day. Up until then I had looked and felt 15 or 20 years younger than I was. Now it was no longer true. I just never regained the kind of stamina for regular exercise classes, though I did (and still do) yoga at home. Better OffOne thing I love to do is writing. There was a period when I wrote daily and extensively in one journal after another. And I’ve always been an extensive letter writer. Now, sitting weakly in mychair, writing became my therapy and my salvation. I wrote essays. I wrote poetry, including Haiku. I wrote stories and recorded my dreams. I also practiced mindfulness, noting what feeling I had when they came up, and paying attention to what made me tired and when was the best time for me to do things. Since I had more energy in the morning, that’s when I’d do every active thing possible. I cooked practically all my food in advance, knowing that if I didn’t, I would be living on sandwiches and candy bars, and not get the vegetables and grains and good things that I needed. I learned to break big jobs into a lot of small ones and not let things build up. I’ve truly learned how much more enjoyable life is when you focus your attention fully one thing at a time. I’ve learned to space out whatever I have to do. If I’m very active one day, I might do more sedentary things the next. This takes planning ahead but it really helps me live on an even keel. So even with hepatitis, I’mprobably better off as a whole than I was before. Philosophical OutlookIn the fall of 1989, with the Oregon house sold, I moved to Connecticut where I now live in my own apartment attached to Valerie and Dwight’s house. I have constructed a rather extensive garden here and I have an enjoyable life. My last blood test showed my liver enzymes at normal range. I still take a nap most afternoons, but not always. This year, when I turned 75, I was finally able to giveup smoking. While I wouldn’t wish hepatitis on anyone, I probably have the resources and temperament to handle it better than many could. It’s natural to ponder what I might have been if I hadn’t gotten the disease, but my philosophical approach is to look at what it has given me, not what it has taken away. I’ve learned to enjoy what I have rather than pining for what I don’t have. Life since hepatitis may be less wide but it is certainly a lot deeper. Getting hepatitis was not completely the end of my life, as I knew it, but the beginning of a new life -- one with different challenges, yes, but also with some special rewards. Who knows what the future holds? No life comes with a guarantee, does it? There was a time when Arline Loh of Wilmington, Del., didn't tell people she has hepatitis B. "It carries such a stigma," says Loh, 57, an information technology expert who retired three months ago because of liver damage caused by the disease. "Hepatitis B is classified as an STD (sexually transmitted disease)." It can be transmitted sexually, but Loh contracted the disease at birth from her mother, who carried the virus. About 90% of babies who are infected at birth develop chronic infection, compared with 6% of those infected later in life. Until recent years, there was little the medical profession could do to help. Loh says the doctor who diagnosed her 17 years ago told her to "rest, and maybe you'll get better." That has changed. Today there are five medications for hepatitis B, including two approved in 2005. "Now, I don't want to be silent," Loh says. "Now there are drugs available to manage and treat this disease." Like hepatitis C, hepatitis B can cause long-term, chronic infection that can lead to severe liver damage, cirrhosis or liver cancer. The diseases can go undetected for decades because they often cause no symptoms until serious liver damage has occurred. "We're seeing an epidemic of both advanced cirrhosis and liver cancer," says Fred Poordad, chief of hepatology in the Center for Liver Disease and Transplantation at Cedars-Sinai Medical Center, Los Angeles. "I expect this to only get worse over the next 10 years" as the baby boomer population ages. Hepatitis B disproportionately affects Asians and Pacific Islanders, who account for over half of the more than 1.3 million carriers of the virus, says hepatitis researcher Samuel So, director of the Asian Liver Center at Stanford University School of Medicine. Hepatitis rates among Asian-Americans are higher because the rates are high in many of their countries of origin, according to the Asian Liver Center. China, where Loh was born, bears the world's highest rate of hepatitis B, he says. About one in 10 are infected, and about half a million people there die each year. "We call it the silent killer," So says. "Many people who are infected don't know it because they feel perfectly healthy." Studies show that 10% to 20% of Asian-Americans have chronic hepatitis B infection. And carriers with no symptoms can unwittingly pass it on to their sexual partners or to their children. Routine blood tests don't include the specific test to detect hepatitis B, he says, so patients should ask for it.Hepatitis is caused by viruses that attack the liver, causing inflammation. There are several types of the virus, labeled alphabetically A through E. But all of them initially can cause temporary symptoms such as fatigue, appetite loss, nausea and abdominal discomfort, dark urine and jaundice, or a yellowing of the skin and eyes. There are vaccines for types A and B. An advisory committee of the Centers for Disease Control and Prevention last fall strengthened its recommendations to increase use of both vaccines. Now, all babies, not only those in states with high hepatitis rates, will be immunized against hepatitis A at 12 months to 23 months old. Also, hepatitis B vaccine will be required for all newborns and adolescents who missed their baby shots. Hepatitis B vaccine also is recommended for adults, especially those in high-risk groups. Vaccination has helped reduce rates of hepatitis A from 143,000 cases in 2000 to 61,000 in 2003, and of hepatitis B from an average of 260,000 new cases a year in the 1980s, when the vaccine was licensed, to about 73,000 in 2003, the CDC says. But the most common type of hepatitis is C, and for that there is no vaccine. As many as 4 million Americans and 170 million people worldwide may be infected, Poordad says. "There are still 30,000 to 40,000 new cases a year. Much of it stems from recreational drug use as well as immigrants to the U.S. who come already infected." He says hepatitis C is the most common cause of end-stage liver disease requiring transplantation. Yet here, too, there is hope, he says. "There's been a flurry of research activity" investigating promising new drugs and drug cocktails, he says, and "we've gone from treatments that are less than 10% effective to therapies now that are 50% effective." Some strains of the virus can be eliminated in patients. "We feel if we can eradicate the virus," Poordad says, "we call that a cure."That's what's happened for Robert Hartmann, 42, of Los Angeles, who owns the Improv Comedy Club chain. He contracted the disease after having dental work in 1977. It was undetected until 1992. "They didn't have a lot of treatment options," he says, so he didn't begin drug therapy for another 10 years. Now, after 16 months of combination drug therapy, he has been virus-free for a year and a half. "That's why the message needs to get out that, guess what — get tested for hep C because the cure rate goes up every year," he says. "The sooner you get tested, the better chance you have of beating this without damage to your liver." *Since this story was written, Arline Loh lost her battle with liver cancer, on October 15, 2013. Arline was a passionate hepatitis B advocate who was also a founding member of the Hepatitis B Foundation's One Hundred Chinese Families and Friends campaign, and was recognized as a "Champion of Change" by the White House. My life completely changed on November 16 1997. I still remember that Sunday morning. I was going to have my breakfast when, suddenly, I fainted. Two weeks later, I had a rash over my whole body and my eyes and skin were yellow. I went to a doctor who ordered an ultrasound and blood tests. He recommended that I stay one week at the hospital. My diagnosis: hepatitis A with a co-infection of hepatitis B. At the time I did not understand what my doctor said, but I remember him saying “You will recover from hepatitis A, but what concerns me is your hepatitis B because it does not have a cure. Many people die from liver cancer and cirrhosis as a consequence of hepatitis B.” I was only 21 years old and can express in three words my feelings - I was shocked! I was also very frustrated because for the second time in 18 months, I had to interrupt my university studies in Chemical Engineering. Several doctors stopped by my hospital room to ask me questions about my personal life. They asked if I was a drug-addict and how many sex partners I had. The truth is, I was not a drug addict and I had never had sex. It is very important to mention this because it is wrongly assumed that you can only get hepatitis B through drugs and unprotected sex. I spent many years crying, complaining, blaming and playing the role of victim, until I realized that there are just two solutions for situations like this: you sit and cry or, you enjoy the beauty of being alive and make every day count. I decided on the second choice. In Guatemala it is not possible to get the HBV DNA and other important blood tests for this chronic disease. Fortunately, I have been very lucky. I have the best parents, family and friends who helped me travel to other countries to monitor my situation. Last year I needed to get a liver biopsy and I promised that if the results were negative for cirrhosis, I would live to make two of my dreams come true: to study a specialization in hepatitis B and to create a foundation in my country. The day I can help to make sure that my country can provide free hepatitis B screenings, vaccines, and affordable treatments, I will feel that I did not pass through a couple of inconveniences in my life for nothing. After receiving good news about my biopsy results, I happened to read the foundation’s B-Informed newsletter and was suddenly inspired to send an email to Dr. Block telling him about my dreams. Honestly, I never imagined that he was going to answer my email! I still remember how happy I felt when he answered my email almost immediately. My dreams are coming true with the support and motivation of Dr. Block and his wife Joan, co-founders of the Hepatitis B Foundation. For years this foundation has been not only a source of information about hepatitis B, but a place and group of people who really care about those living with chronic hepatitis B. This makes me feel that I am not alone. Thank you! Finally, I am healthy enough to continue my normal life. I have been working as a science teacher for five years and just completed my Bachelor’s degree this past November. I think that now is the moment to start my voyage to the world of hepatitis B research. How could it possibly happen? Every precaution and care was taken. Matt, our only child with hepatitis B, had been monitored since he was two and a half months old. Three generations in our family had been tested and vaccinated for the virus. Then, suddenly and without warning, our middle son Andrew was diagnosed with hepatitis B related liver cancer. How? How? How? We had felt so lucky. Matt, born in Korea, joined our family in 1984. Soon after he came home, he was diagnosed as a hepatitis B carrier. At that time hepatitis B was a fairly new phenomenon on the American pediatric scene and there were many unknowns. By the time Matt started school, we had found the Hepatitis B Foundation and the Liver Cancer Prevention Center at Fox Chase Cancer Center.where he was given a physical exam, and blood was drawn to monitor for liver involvement. In 1985 our family grew again. Andrew, 7, and his sister Jenny, 6, arrived from Korea, and the same pediatrician tested for hepatitis B. We were happy to hear their tests were negative, and both Andrew and Jenny were vaccinated. We thought nothing more of it. A son-in-law and two grandchildren joined our family and were all vaccinated. Matthew turned 20, still showing no hepatitis B side effects. All was well. We were so lucky. Fall of 2002Then on Sept. 2, 2002, Andrew, woke complaining of abdominal pain. By then I had six children and had been a mother for over 30 years. Stomachaches were routine. I suggested he get dressed and go to work; maybe he would feel better. But by the time breakfast was over, Andrew was in such pain that his sister took him to the emergency room and by the afternoon he was admitted to the hospital. I was stunned when two doctors came to tell us Andrew tested positive for hepatitis B. A biopsy confirmed a diagnosis of stage IV hepatocellular carcinoma [liver cancer] metastasized to the lungs. An earlier diagnosis could have meant surgery or a transplant, but now chemotherapy was our only option, and even then it only shrank the tumor in a small percentage of patients. Our best chance was a clinical trial and a miracle. Neither was to be. By the time Andrew qualified for a trial, his liver function was so low he was rejected. Andrew Lee Wise died at home on Dec. 11, 2002. He was only 24 years old. But that is not the end of our story. After Andrew's cancer diagnosis, I called our former pediatric group to see the results of all the original hepatitis B tests. Their office said the lab's records before 1992 were no longer available. One doctor gave me a handwritten copy of their file reports and said, "See! Their tests were negative. Matthew's was positive." I read it for myself: "Hep B Surface Antibody Negative." Just surface antibody negative means nothing! It is the combination of results from the surface antibody, core antibody, and surface antigen tests that determines a person's hepatitis B status. I felt and still feel like screaming. How could a leading pediatric group in a university town get it right in 1984 and so wrong in 1985 and 2002? One Year LaterOur family has been devastated by Andrew's death. We are weary and wary, and painfully aware his life could have been prolonged, and might have been saved had his pediatricians recognized he was a hepatitis B carrier. The lessons we learned were painful and need to be passed on, but the experience is rare. What advice do we have? Older adoptees and their families should re-test for the virus. Be sure you see and understand the tests and results [and ask for copies]. Vaccinate the entire family. Stay informed about the latest research on hepatitis B. And enjoy life. When our youngest daughter Mary was in high school, our youth minister asked, "What was the best gift you ever got?" Mary replied, "Andrew, Jenny and Matthew." We are still very lucky parents. Excerpted with permission from "One Family's Story: Coping with Hepatitis B" by Helen Wise inHi Families Magazine (Jan/Feb 2004), published by Holt International Children's Service at www.holtintl.org. Editor's Note: The Hepatitis B Foundation thanks the Wise family for graciously sharing their story so that other families can learn from their personal tragedy: it is important that adoptive parents are absolutely certain of their child's hepatitis B status. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. For further assistance, please feel free to email the Hepatitis B Foundation at info@hepb.org or call 215-489-4900. A Profile in Courage: Andrew Lee Wise1978- 2002Andrew Lee Wise Lee, Seung-hoon was born March 4, 1978 in Seoul, Korea. Andrew, as he is now known, and his sister Jenny joined the Wise family in Princeton, N.J., in December 1985. These excerpts from his journals, conversations, and e-mails chronicle his struggle with the news in late 2002 that he had liver cancer. Andrew Lee Wise died Dec. 11, 2002, at the age of 24. Sept. 22, 2002-I wanted to send this letter, personally, to let each and every one of you know [my] biopsy confirmed liver cancer. If you are bewildered, shocked, upset, concerned, scared, anything at all, let me assure you that I am too. However, I have come to realize that this is just a battle and a battle that I can win and will win with God, my family and my friends. Oct. 6-I have good news: I was accepted to the Cancer Institute of New Jersey (RWJUH) for treatmentOct. 9. Oct. 25-I went into RWJUH October 7, two days earlier than expected [for] chemoembolization of theright lobe of my liver. I was pretty drugged up and cannot remember anything. Once I got home.extreme amount of pain.really tough.a high temperature. Nov. 14-I hope that everyone is able to enjoy the few beautiful autumn days that have come aroundrecently. However, a bit of bad news-the three spots originally seen in the scans on my lungs-they have grown since the first treatment. Nov. 2-This treatment [chemoembolization of the left liver lobe] was a bit rougher and there were a few more complications but I am "done" (supposedly) until after Thanksgiving. I am quite concerned about what the next treatment will be. I have been told not to think about these things and focus on the here and now, but it is really hard to do. My typical day has two lows: the morning, when I first wake up and my body feels as if it has been through a thorough beating. and the evening, when everything is quiet and dark, and I am left to my wandering thoughts and self-pity. But, once I am up and have eaten my breakfast and taken my 9 or 10 pills, I begin to be progressively better as the day goes on. I am quite excited for Thanksgiving with my family. It will be the first time [most] of my siblings will have seen me post-treatment. I am a bit shocking to look at now. Nov. 23-I need to have hope, keep faith and believe God is with me always. I need . let myself be flooded by the enormous embrace of love from all those around me, and even around the country.Nov. 26 (first day of Hospice)-Living each day to its fullest potential, that is the goal. Sleeping, eating, exercising and engaging in merry fellowship is how I'll do this. I can do this with the will of God. Thanksgiving 2002-Last Sunday morning, I was taken up to RWJUH after waking with pains in my liver. The doctor informed my parents and me the tumors in my liver and lungs were growing. This was obviously a shock to us but what was revealed next was heart-shattering. I was given an expected time frame of six months to live.I believe in miracles and continue to have faith. I will not let six months be the definitive! I pray that each of you will continue to be positive and to live life to its fullest. Dec. 9-Dearest Friends and Family, as the Holiday season starts to take off, my health has turned somewhat sour. My nurse comes over more often, and eating, talking, listening, reading and writing are far more taxing than I ever imagined. I will try and remain as strong as I can for this holiday season as it signifies so much more to me this season than ever before.Thank you all for your love and support.I love you all so much! God bless you all! Dec. 10 (Christmas list)-I want something very sentimental, such as a necklace with "mother" in English on one side and "mother" in Korean on the other, just to let [Mom] know she has and always will be my one and only mother. Dec. 10-Death is not an evil at all, just a different blessing that requires a more positive frame of mindand good reminiscence.. Excerpted with permission from "Through Death to Life" by John Aeby in Hi Families Magazine (May/June 2003), published by Holt International Children's Service at www.holtintl.org. Editor's Note: The Hepatitis B Foundation sincerely extends its sympathies and gratitude to Helen Wise and her family for sharing Andrew's story with us. The loss of such a beautiful, articulate, and generous young man is heartbreaking for all who knew him One Man's Story A Daughter's PerspectiveCathy Pachuk, Ph.D.Associate Professor, The Jefferson Center, Thomas Jefferson University When my father was diagnosed with primary hepatocellular carcinoma (HCC), or liver cancer, about two years ago he looked to me for help in identifying treatment options. The diagnosis of HCC, difficult for anyone to handle, was extremely devastating to my father, who had already battled numerous life-threatening conditions and diseases. No Stepping Back from Set BacksIn February 1970, during a routine physical, a massive thoracic/abdominal aneurysm was found on my father's aorta. The odds of surviving surgery were very low and the odds of surviving without serious complications, such as paralysis, were even lower. The only surgeon willing to perform the surgery was the one who pioneered the development of this type of surgery, Dr. Michael DeBakey, of Methodist Hospital in Houston, TX. My father was one of the first patients to undergo this type of surgical procedure. The 12-hour operation was a success. Within three months, my father was back on the golf course. Due to complications from the aneurysm, however, one of my father's kidneys atrophied, leaving only one functional kidney. In addition, my father developed adult onset diabetes, congestive heart failure and an irregular heart beat that required insertion of a pacemaker. In 1992, my father was diagnosed with prostate cancer and treated successfully. Nine years later, the seemingly impossible happened: the cancer had metastasized and was now in his bones and spinal column. Currently, the cancer is being managed by hormone therapy. Through it all, my father has been a fighter. He has refused to feel sorry for himself, lose control or break down. He has faced every enemy head-on with a fierce determination to gain the upper hand. My father's philosophy has always been that life is meant to be lived. A Silent, Deadly InfectionThen one day, almost two years ago, my father was informed that he had liver cancer. Ironically, the same surgery that had saved his life 30 years earlier likely also resulted in his being infected with a deadly hepatitis virus. Silently working behind the scenes, the infection had finally taken its toll. My father had multiple liver tumors. He had about 6 months to live. For the first time, I heard the tiredness in my father's voice. He could only take so much. It wasn't fair. As soon as he surmounted one obstacle, another appeared in its place. But, despite it all, he wanted to lick this one, too, and so the hunt for a treatment began. Hunt for a TreatmentI spent the next few days speaking with hepatologists and scouring the internet for therapies, treatments and clinical trials. Unfortunately, I was learning that my father was ineligible for many standard treatments, including chemoembolization and surgery, due to his many health problems. His options were growing scarce and time was running out. Then I spoke with Dr. Jack Wands, director of the Division of Gastroenterology and The Liver Research Center Rhode Island and Miriam Hospital(s). He listened attentively to my story and asked if I had heard of Dr. Damian Dupuy at Rhode Island Hospital, who was doing incredible things with radiofrequency ablation (RFA) therapy, including treating liver cancer. New Therapy Extends Quality of LifeAs soon as I got off the phone, I fired off an e-mail to Dr. Dupuy. Within 24 hours I received a reply - he would be happy to evaluate my father, but cautioned that this treatment was not for everyone. Within a few weeks, my father underwent several tests and was then on his way to Rhode Island for treatment. Dr. Dupuy was able to ablate most of the tumor masses and two months later, my father was back on the golf course. That was eighteen months ago. Since that time, my father has needed two more RFA treatments. With every treatment, my father has recovered more rapidly. He is currently is leading an active life with my mother, spending time with his grandkids, and of course playing golf. We know that the cancer is not gone, but we will control it with ablation therapy for as long as possible. This treatment has not only extended his life; it has allowed him to live it doing the things he most enjoys doing. Editor's Note: The Hepatitis B Foundation sincerely thanks the Pachuk family for graciously sharing their story so that other families can learn from their experience. It is vital that individuals and families be aware that liver cancer can occur in those chronically infected with hepatitis B. Please feel free to email the Hepatitis B Foundation at info@hepb.org or call 215-489-4900 for more information about hepatitis B and liver cancer. A Doctor's PerspectiveDamian Dupuy, M.D.Associate Professor, Department of Diagnostic Imaging at Brown Medical School, and Director of Ultrasound at Rhode Island Hospital In addition to complete tumor eradication, radiofrequency ablation (RFA) can be used to control primary liver cancer in patients with no alternative options due to tumor size, tumor location or associated medical conditions. The daughter of one such patient who greatly benefited from the palliative effects of RFA has written her account of his story. With the patient's permission, I would like to share his case from the physician's perspective. First ImpressionsMr. Pachuk presented to me with two large hepatocellular carcinomas (>7cm) in the right lobe of his liver approximately 18 months ago. Standard therapy for his disease would have been surgical removal of the right side of his liver. Mr. Pachuk's normal left lobe was sufficiently healthy enough to carry the work load. Unfortunately, Mr. Pachuk had a history of congestive heart failure and chronic renal insufficiency making him a very poor surgical candidate. Despite his medical problems, Mr. Pachuk lives a full life enjoying travel and golf and he is not ready to throw in the towel just yet. His local physicians as well as specialists at a major cancer center were not aware of the benefits of RFA as a minimally invasive treatment option in cases such as his and he was given no treatment as his only option. This left him with a typical median survival of 4-6 months. Fortunately, his daughter works in the field of hepatology and her connections led her to me at Brown Medical School and Rhode Island Hospital where I had been using RFA as a palliative treatment option in patients with large liver tumors such as Mr. Pachuk's. Overcoming Medical ComplicationsThe first ultrasound-guided RFA treatment went very well, but I knew upfront that complete tumor eradication was out of the question; nonetheless, I did my best and approximately 80-90% of the tumor was killed. Normally, I follow patients with contrast-enhanced computed tomography (CT) or magnetic resonance imaging (MRI), but in Mr. Pachuk's case his renal insufficiency precluded use of intravenous CT contrast due to its toxic effects on the kidney. Compounding this management dilemma, Mr. Pachuk developed a cardiac arrhythmia requiring a permanent pacemaker. This now prevented him from being followed with MRI since the magnetic fields interfere with pacemaker function. Fortunately, Mr. Pachuk's tumor made a protein, which approximately 50% of primary liver tumors make, called alpha fetoprotein (AFP). Therefore, I have been following Mr. Pachuk's disease status with the AFP blood test. He has had two additional RFA treatments using CT guidance, whereby his tumor has been retreated to keep it from growing into the vital part of his liver where the major blood vessels and bile ducts are located. Walking the fine line between killing enough tumor without hurting the overall health status of Mr. Pachuk has been challenging enough, but compounding the inability to clearly see the areas of viable tumor has made it even more challenging. A Physician's RewardDespite the complexities of his disease and overall health status, Mr. Pachuk continues to live a normal life probably more active than most people in their 80's. This desire to live life to its fullest is most refreshing and as a physician, I find it very rewarding to be able to apply state-of-the-art technology in a clinical situation where no other hope exists. I thank Mr. Pachuk and his family for their bravery and open-mindedness during the course of his RFA treatment. I will continue to do my best at keeping his quality and quantity of life the main goal of therapy. Hopefully, those who hear this story may share this knowledge so that others in similar situations may benefit from this truly remarkable treatment option. About Radiofrequency AblationFor decades, direct injection of absolute ethanol had been used to treat small primary liver cancers with success rivaling surgery. Recently, radiofrequency ablation (RFA) a heat-mediated therapy has replaced alcohol due to its ability to treat larger lesions with fewer treatments. RFA is a technique whereby an alternating current in the frequency of radio waves is emitted from the tip of an electrode or needle placed directly into a tumor. The alternating current flowing back and forth through the tissue causes frictional heating and coagulation of tumor. For the treatment of primary liver cancer, RFA has achieved complete cell death in over 85-90% of cases in lesions smaller than 5 cm, with less than a 10% local recurrence rate. Unlike surgery and many other treatments, RFA can be performed many times in the same patient. This is very important in the hepatitis B population because these patients are prone to develop tumors in more than one site in the liver over time. The RFA procedure is a very safe and non-toxic treatment. The procedure is almost exclusively performed on an outpatient basis with the administration of intravenous medication to alleviate pain during the procedure. After the procedure, patients are given a small bandage and sent home with narcotics for a few days to reduce discomfort at the treatment site. Until modern medicine can prevent the formation or stop the growth of primary liver cancer at the gene level, focal ablative therapies such as RFA will be mainstays in the treatment of primary liver cancer for years to come. Tragic End for Young American Asian Doctorwith Hepatitis BBy Joel P. Engardio From our table at a sidewalk cafe in August 2000, my partner Mark and I took turns pointing out things that made us smile. Our mood was sublime, like the day, as we headed to an open-air jazz festival. Until a sharp stomach pain made Mark wince and double over. Was it the ulcer he feared? At 30, Mark Lim was a young doctor saddled with debt and the challenge of building a career after eight sleepless years of medical school and training. Mark didn't have an ulcer. An ultrasound of his abdomen showed an ominously patchy liver. A biopsy confirmed the worst: cancer. His liver was riddled with so many out-of-control cancerous lesions that neither surgery nor transplant was possible. Chemotherapy would only slow his inevitable, insufferable demise 14 months later. But the question remained, how did such an otherwise perfectly healthy young man, who had a gym-toned body and never drank, end up with the organ of a hard-living alcoholic twice his age? The answer was chronic hepatitis B, a virus that can silently harbor in a healthy liver for decades before unleashing its destructive power. Mark knew about his hepatitis. He discovered it from blood tests required by his medical internship. But experts at the prestigious Midwestern hospital where Mark did his residency told the 26-year-old not to worry. He was a "healthy" carrier, they said. His symptom-free kind of hepatitis wouldn't have to be monitored for liver cancer until he was in his 50s or 60s. Good advice, if Mark were not an Asian man. Had he or his doctors been trained to know that Asians are at accelerated risk because they are typically infected as children, he would have immediately gotten regular ultrasounds and blood tests to catch the cancer that killed him at 31. Liver cancer is rampant in Asia. The main culprit is chronic hepatitis B, a virus transmitted by blood or semen. Exposure to it at childbirth is the real problem, because that's when the risk of chronic or lifelong infection is greatest. Since it can take 30 years to manifest, all adult children of Asian immigrants -- even those born in the United States -- are at risk. Before Mark died last October, he became a spokesperson for the Jade Ribbon Campaign, urging all Asians to check their hepatitis status. As a doctor -- and a victim -- Mark felt it was his duty to speak up about what has become the greatest health disparity between Asians and Caucasians. He was moved not only to fight the disease that was killing him, but to wipe out the ignorance that had allowed the problem to get so out of hand. Jade Ribbon is just one voice trying to sound the alarm of a health crisis to come. Confronting his own mortality wasn't easy for him. "It's scary to think of your life in months, instead of years," he told me as his death approached, our dreams of that day at the sidewalk cafe shattered. His life was so short, and his death so horrible. Mark was dedicated to saving lives as a doctor. He can't do that anymore, but his story can. In the end, the most he could do was hope his words might inspire his medical colleagues to offer -- and his Asian peers to seek -- the information that can save thousands like him from his fate. If only they listen. Excerpted from articles by Joel Engardio that were originally printed in the San Francisco Weekly 5/1/02 and San Francisco Chronicle 1/3/03. Editor's Note: The Hepatitis B Foundation thanks Joel Engardio for graciously sharing his story so that others can learn from Mark Lim's tragic death: it is important that those who may be at high risk for hepatitis B are tested as soon as possible. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. Running was Adrian Elkin's passion. As the youngest of five children, Adrian grew up running, trying to catch up with his older brothers and sisters. In high school, he discovered cross-country running and continued running after he went to college. During Adrian's sophomore year at Southern Oregon University, he was unexpectedly diagnosed with liver cancer due to chronic hepatitis B. This became his toughest race ever. Adrian courageously underwent months of surgery, chemotherapy, and related treatments to beat the cancer. During the last two months of his life, he devoted his time to organizing a race to raise awareness about liver cancer and hepatitis B. Adrian and his family started work on the first Answer to Cancer Race in June 2003, racing against time. In six incredible weeks, they were ready. On August 3, the day of the race, he fired the starter's pistol and the runners were off. Eight days later, Adrian Elkins died at the age of 20 years old. Adrian began life as an abandoned baby at a Calcutta orphanage. At three months, he was adopted by the Elkins family from McMinnville, Oregon. "He was the perfect little boy," his mother Judy recalled, and "we doted on him." Although he appeared healthy, Adrian and his parents always knew he was a carrier of hepatitis B due to a blood transfusion he received as a premature infant in India. However, they never expected the disease to manifest itself as a rare type of liver cancer called hepatocellular carcinoma (HCC). "Doctors said he was at little risk of problems because of the hepatitis B," his mother said. Judy Elkins now wishes that they had been on the lookout for cancer, with regular screening and specialized medical care. But the possibility seemed so remote. "We heard what we wanted to hear," she said. "Now we know more than we wish we had to know." On the first day of his sophomore year in college - Sept. 30, 2002 - Adrian awoke feeling funny. In retrospect, he realized that he had felt tired all summer. He had attributed his symptoms to his busy schedule of working and training for a major relay. As he returned to his dorm room after breakfast, he began having a lot of pain and difficulty breathing. A friend drove him to the hospital emergency room, and at first, physicians thought Adrian was having a gallbladder attack. Then, an ultrasound test revealed that his liver was extremely enlarged. A liver biopsy was done. Days later, the family learned that Adrian had hepatocellular carcinoma, or liver cancer. It was devastating news. Still, there was hope. Adrian was an excellent candidate for surgery to remove the cancer, since it appeared to involve only the right lobe of his liver. He started his first round of chemotherapy while waiting for surgery. Sadly, the operation brought more bad news. The cancer wasn't confined to the right lobe after all - the left lobe was affected, too. Worse, the cancer had also spread to his lungs. Adrian battled his disease for ten months. Adrian's legacy is a gift to generations of patients in their fight against liver cancer. Thanks to the generous support of many, the Answer to Cancer Race 2003 raised $24,000 for three charities dedicated to liver cancer. Adrian's final gift is the Answer to Cancer Race that will help generations of patients in their fight against liver cancer. He turned his passion for running into a legacy of caring that will endure. Editor's Note: We thank the Elkins family for sharing their story with the Hepatitis B Foundation and extend our admiration for Adrian's commitment and dedication to educating the public about liver cancer and hepatitis B. This article was excerpted from their emails and press releases on their Answer to Cancer Foundation at www.answertocancer.org. One Woman’s Life with Chronic Hepatitis B Brings Hope to Others At first glance Sheree’s life appears plagued by illness and the loss of a much-loved hospital nursing career. Despite the challenges imposed by living with chronic hepatitis B, however, Sheree has endured and reinvented herself with the help of technology and a love of helping others. Sheree lives in the rolling green hills of southern Ohio as generations of her family before her. She has penetrating green eyes and speaks with a gentle Appalachian accent. Neither she nor her family members fit the profile of someone who might be at risk for hepatitis B. In 1981, at age 26, Sheree began experiencing nausea, fatigue and abdominal pain. “I kept wondering why I was so darned tired. Was it because I had been working at least two to three double shifts a week and had a young child? I was young, I shouldn't have been so tired,” she recalled. Soon she could tolerate only burnt toast, oatmeal, and water. “I diagnosed myself as having gall bladder problems and went to a surgeon to have it removed,” she said. “I was surprised to wake up in the hospital’s isolation ward, which meant no one could come in without protective gowns and gloves. I thought, what is going on? Surgery patients aren’t isolated.” The doctor told her she had “some kind of hepatitis.” Further tests revealed that not only did she have chronic hepatitis B, but she was also suffering liver damage from the virus. “I remember thinking, ‘Oh my God, what now? How did I get it? What about my son and husband?” Fortunately, test results showed that neither her son nor husband was infected. Sheree had worked as a nurse and assumed she had become infected through exposure to infectious blood or body fluids from a jaundiced patient she had cared for. She eventually returned to work, but in the months that followed, suffered relapses and frequent hospitalizations due to fatigue and abdominal pain related to hepatitis B. At age 26, Sheree found she couldn’t sustain the workload of caring for both patients and family.She became pregnant with twins four years after her diagnosis and her obstetrician recommended an abortion because of her hepatitis B infection. “I just couldn’t believe his advice,” she recalled. Sheree’s nursing experience and outrage/disbelief/anger kicked in and she set out to find an infectious disease doctor who could answer her questions about the risk her hepatitis B posed to her unborn children. “Thank God I found a specialist who reassured both my doctor and me that the twins could vaccinated at birth so they would be protected from the hepatitis B virus,” she recalled. “I found an excellent pediatrician who prepared everything in advance. When my C-section was scheduled, the hepatitis B vaccine was ready and my boys were immunized immediately to prevent infection.” As years passed, Sheree continued to suffer disabling fatigue and relapses from her hepatitis B. As a result, she kept trying to learn more about hepatitis B. In 1997, she met Steve Bingham and John Kirk through an email list designed for patients with hepatitis B or C. “I probably stood out because I kept asking questions about hepatitis B that no one could answer,” she recalled. In 1998, Sheree became a co-host of a new email list - the Hepatitis B Information and Support List (hblist.net) – which remains the only online support group for people living with chronic hepatitis B.She also created a comprehensive online “Hepatitis B Research Archive” of medical and general news articles on hepatitis B. “I guess it’s the nurse that’s still in me. I love helping others and doing research. Answering people online and posting the latest medical information on my research website is one way I can help them,” Sheree said. In 1999, Sheree’s family suffered another enormous blow. Her younger brother was diagnosed with hepatitis B just a few weeks before he died suddenly and tragically of liver cancer. After his death, everyone in the family was tested. It turned out that several of Sheree’s immediate and extended family members were also found to be chronically infected with hepatitis B. Her experience as the HB-List’s “Mom” was extremely useful as Sheree helped guide her family through the complexities of understanding hepatitis B, the tests, the management issues and treatment options. Sheree’s active involvement with the online HB-List and Research Archive revitalized her nursing skills and utilizes her compassionate and personal understanding of the issues faced by people living with hepatitis B. Her email messages, signed “Hugs, Sheree,” confer a kind reassurance to everyone. You can almost hear her maternal “clucking” as she reassures list members that their hopes and dreams can remain intact, despite their chronic infection. While Sheree has ultimately achieved a non-traditional nursing career that utilizes her medical expertise and research talents, her chronic hepatitis B infection continues to cause liver damage (she has mild cirrhosis) and an unusual amount of pain, which are constant. “There are days when I think, ‘why do I have to go through this?’” she admitted. “But most of the time, I try not to dwell on it. These are the cards that I’ve been dealt and I have to play my best hand with them.” *Since this story was originally written, Sheree lost her battle with chronic liver disease. Successful Treatment of a Child Living with Chronic Hepatitis B When Helen Kane and her husband adopted their daughter in China, they knew nothing about hepatitis B. They certainly never imagined that their beautiful new baby could have hepatitis B. And they had no idea that their future would be filled with hospital visits, blood tests, and a paralyzing fear of losing their child to this unknown liver infection. Among the most difficult challenges they would ultimately face was whether to treat their child with a potent drug called interferon that required three painful injections each week and promised a lackluster 30 percent chance of success. This was a decision the Kanes, a middle-class professional couple who live outside Washington D.C., never thought they’d be making when they adopted 10-month-old Morgan. In China, their daughter had tested negative for hepatitis B, so the couple assumed she would be free of the virus that has infected 60 percent of the Chinese population and chronically infects 10 percent. Shortly after they returned home, Morgan was retested for hepatitis B, as recommended for all international adoptees. A week later, a nurse called with the results. “I remember that call clearly,” Helen said. “I was at an outdoor restaurant having a cup of coffee with Morgan in her stroller when my cell phone rang. The nurse told me Morgan had a ‘touch’ of hepatitis. I got off of the phone and started crying. I called my husband, but it was too difficult to explain to him over the phone.” With that phone call, the family’s life was turned upside down. “In the beginning, we were absolutely devastated,” Helen recalled. Tests indicated that Morgan had a high viral load (a lot of virus in her bloodstream) and that the infection was already causing significant damage to her liver. “Of course I had no idea then what the test results meant, or the significance of the various hepatitis B antigens and antibodies.” The Kanes took Morgan to a pediatric gastroenterologist to the Johns Hopkins Medical Center. “I can still remember asking our doctor why we should treat Morgan, given the low chance of success and the difficulty of treatment,” Helen recalled. “Her reply was, ‘because you have to try anything you can to prevent her from ever needing a liver transplant.’ Her statement truly had a profound effect on our decision. We decided that even though the odds were low, we had to try.” Four months after arriving from China, Morgan underwent her first liver biopsy. This is a procedure that involves removing a small sample of liver tissue with a surgical needle. “One of the most difficult things to do was to sit with Morgan for nine hours while depriving her of food before the procedure,” Helen said. “She went from being a happy baby, to a quiet, withdrawn baby wondering why we wouldn’t feed her.” “I’ll never forget carrying my little one into the operating room and trying to soothe her as they placed the mask over her face,” she continued. “Later, we could hear her screaming as we entered the recovery room. She was so angry with us! It was difficult trying to comfort a terrified baby when she has a board strapped to her hand and an IV hooked to it.” That night at the hospital, Morgan received her first interferon injection. Later at home, the Kanes began to administer the injections three times a week. They designated a guest room that Morgan rarely played in as the “shot” room. “We would have everything ready for her so all we did was quickly give her the shot and then immediately calm her by placing her in a warm bath following the injection,” Helen recalled. Morgan also underwent bi-weekly blood tests to monitor her response to treatment. “The interferon shots were tolerable, but the blood tests were very hard on her. Morgan could sense when it was time for a blood draw and became withdrawn. When she began to talk, I remember the pain I felt when I told her we were going to get her blood drawn and she screamed back, ‘No! No blood!’ When the words came out of her mouth, I was so taken aback,” Helen said. As with most children who receive interferon for chronic hepatitis B infections, Morgan had few side effects from the drug. “She did experience some muscle and joint pain, and she was certainly more fatigued than the average child, but as a baby she had the luxury of sleeping, as opposed to adults who must resume work,” Helen said. Despite the difficult treatment, Morgan’s personality blossomed. She was a cheerful and resilient patient with an outgoing personality. She quickly became a favorite among clinic staff. Unfortunately, six months of interferon did not reduce Morgan’s high viral load or liver damage. “I remember talking with another mother whose daughter was also not responding to interferon treatment,” Helen recalled. “She told me she had finally accepted that her family would always be living with hepatitis B. Her statement was a wake-up call to me. It was the first time I realized we might be living with Morgan’s hepatitis for the rest of her life and I began to actively research hepatitis B on my own.” Since interferon did not work, Morgan’s doctor recommended trying the oral antiviral drug called lamivudine (Epivir-HBV), which at the time had not yet been approved for children (it was approved for adults in 2002, and shortly afterwards for children). At age 2 1⁄2 years, Morgan required a second liver biopsy before starting one year of lamivudine treatment. After nine months on lamivudine, Morgan began to respond to the drug and her viral load decreased to undetectable levels in the bloodstream, which meant there was a lot less virus attacking her liver. Current drug treatments such as interferon or lamivudine rarely result in a “complete cure”, which is achieved only when the immune system gets entirely rid of the virus and then develops protective antibodies against future exposure to the virus. For Morgan, though, after a full year of lamivudine treatment, she tested negative for the hepatitis B virus. By Christmas, Morgan tested positive for the protective antibodies – she had experienced a complete cure from a chronic hepatitis B infection. “It was the best Christmas present we could have ever received,” Helen said with tears in her eyes. It has been three years since Morgan cleared the hepatitis B infection. Today, she is a bubbly, seven-year old with no signs of liver damage. “It’s funny, we never did ‘celebrate’ like you might think we would when Morgan cleared the infection,” Helen explained. “We are still almost afraid to talk about it, as if it would tempt fate. We know Morgan will always be at higher risk for liver disease than someone who has never been infected. But we couldn’t be happier with her successful treatment.” Breaking the Cycle of Hepatitis B Infections from Mother-to-Child Michelle is one of 1.25 million Americans who live with chronic hepatitis B. Michelle was born in 1969 to an American father and Vietnamese mother, who had met and married during the Vietnam War. She grew up healthy and happy in Kentucky, unaware that her mother had unknowingly passed on the hepatitis B virus to her at birth. When Michelle was born, there was no hepatitis B vaccine available to prevent this infection. Had she been immunized within 12 hours of birth, she would be free of infection today. “I found out about my infection through a routine blood test during my first pregnancy in 2000,” Michelle said. Kentucky is one of the few states in the country that require pregnant women to be screened for hepatitis B. “The nurse called me at home to tell me my hepatitis B test had come back positive. I immediately thought it was a lab error.” “Eight years earlier, I had donated blood and was told that I had hepatitis B. I was re-tested and they told me I had never been exposed to hepatitis B and was free of infection,” she recalled.But after the hepatitis B test came back positive during her pregnancy, Michelle went to see a specialist for more tests. This time, he confirmed she had chronic hepatitis B. Most teens and adults infected with the hepatitis B virus experience only a brief or acute infection. However, when newborns like Michelle are infected, they face a 90 percent risk of developing a chronic or life-long hepatitis B infection. “Needless to say, after my diagnosis I experienced the emotional succession of denial, depression and then acceptance of my hepatitis B infection,” she said. Her immediate concern was to make sure her newborn daughter would not be infected with hepatitis B. “During my delivery, I made sure the hospital staff was aware of my hepatitis B, and I constantly reminded them to make sure my baby received the hepatitis B vaccine within 12 hours of her birth, which prevents mother-to-child infection 90 percent of the time. Fortunately, the hospital staff was on top of things and my daughter was vaccinated properly and today is free of hepatitis B.” Michelle’s husband also tested negative for hepatitis B after her diagnosis and was quickly vaccinated. After much pressuring, Michelle had her parents tested for hepatitis B. “When my mom asked her doctor to test her for hepatitis B, her doctor asked ‘Why?’ He saw no reason to test her, even though Asian-Americans are at extremely high risk of hepatitis B.” Her mother’s hepatitis B test came back positive. Later that year, Michelle found out that her maternal grandmother, who lives in the United States, also tested positive for hepatitis B. “After this revelation, our family history came pouring out,” Michelle explained. “I learned that another of my mom's sisters also has hepatitis B, as do other family members. Vietnam, like other countries in Asia, has very high rates of chronic hepatitis B infection, which is why one in eight Vietnamese-Americans has chronic hepatitis B. Hepatitis B is the second-leading cause of cancer death in Vietnamese-American men because it is often not diagnosed or treated until serious liver disease has occurred.” Today, Michelle has a second child, who was also promptly vaccinated at birth and remains free of hepatitis B. “Knowing that both my children were properly immunized against hepatitis B at birth gave me great confidence that they would be free of hepatitis B,” said Michelle. “Sadly though, this means that only my children’s branch of my family tree will be free of hepatitis B. I wish I could say the same for the rest.” One Man’s Personal Quest for a Cure Rodolfo is a pioneer. In his journey to find a cure for his chronic hepatitis B infection, he has chosen the path less traveled at almost every step of the way. Today, he practices meditation and yoga to strengthen his body on a daily basis. He takes an oral antiviral drug called tenofovir (Viread), which has not yet been approved for hepatitis B treatment by the U.S. Food and Drug Administration (FDA). Recently, at age 42 years, Rodolfo participated in a highly experimental stem cell treatment available only in Europe. Rodolfo’s non-traditional pursuit of a cure is fueled by a fierce drive to recover the health and energy he had before suffering from acute hepatitis B five years ago, when he was living in New York City. The liver infection initially devastated him physically and emotionally. “I was trying to launch a theater career and loving the high energy of New York City,” he recalled, “and then hepatitis B hit me like a ton of bricks.” Suddenly, he was exhausted and aching all the time. A simple blood test showed that he had acute hepatitis B. Follow-up tests showed that the virus was not going away, and he was then diagnosed as having chronic hepatitis B more than six months later. Rodolfo’s doctor wanted to perform a liver biopsy to see whether he had any liver damage and whether he would be a good candidate for treatment. “I avoided getting a liver biopsy for almost a year because I was in denial, I didn’t want to face the fact that my life would be permanently changed by this,” Rodolfo said. Finally he relented and underwent a needle liver biopsy, which is a procedure that involves the removal of a small sample of liver tissue for examination. The biopsy revealed cirrhosis – serious scarring of the liver. Rodolfo returned to his hometown of Miami and to the embrace of his close knit Cuban-American family as he attempted to reassemble his life. During this time, however, he refused to accept that the fatigue, pain and liver damage caused by his chronic hepatitis B infection was something he couldn’t beat. “My symptoms are the reason why I am willing to be so experimental in pursuing treatment,” he said quietly. “And the fact that I may be advancing research that could lead to a successful hepatitis B treatment is simply so satisfying that it enriches my life,” he added. Initially, his doctor recommended treatment with the oral antiviral drug called lamivudine (Epivir-HBV). But Rodolfo viewed it “as a palliative, a drug I would have to be on it for the rest of my life.” He wanted a treatment that had the potential to produce a cure, regenerate his liver and return the energy he had before being struck down with hepatitis B. Although Rodolfo decided to try lamivudine, after one year of treatment his viral load rebounded due to drug resistance – that is, the virus stopped responding to the drug and started reproducing actively again. From this disappointing result, he started doing extensive research on his own and learned about tenofovir, an antiviral drug that has been FDA-approved to treat HIV, but also appears to be quite effective against hepatitis B. While tenofovir has not yet been approved for hepatitis B, Rodolfo found a liver specialist who was willing to prescribe it “off-label” since the drug is in phase III clinical trials for hepatitis B. For the past three years his viral load has dipped to undetectable levels and his liver damage has subsided. But Rodolfo was still in quest of a complete cure and maintained an active “hope file,” where he compiled news of experimental treatments that might some day vanquish the virus and regenerate his embattled liver. “I have a fighter spirit in me,” he admitted with a shy smile. “I don’t just settle for what is available.” He didn’t want to assume that tenofovir would always be able to keep the hepatitis B virus in check. He read about a doctor in England who was conducting experiments that used stem cells to regenerate the liver. According to the research literature, human embryonic stem cells have the potential to develop into many different cell types in the body. Serving as a sort of cellular repair system, they can continuously subdivide and their “offspring” cells have the potential to become another type of cell, such as liver cells that could potentially repair a liver that has been scarred or damaged by chronic hepatitis B. Stem cell research has been limited by politics in the United States, despite early successes in Europe and Asia, because stem cells can be obtained from aborted embryos, as well as cloned or cultivated from a patient’s own white cells. “The minute I read about an experimental trial using stems cells to regenerate the liver, I decided I had to get into it,” Rodolfo said, “this could be a possible cure for chronic hepatitis B.” He emailed the London researchers and in early 2005 was one of five people accepted into the trial. “They used my white blood cells to cultivate about one million stem cells, which they infused into my portal vein. It is hoped that the stem cells will multiply in my liver, take on the characteristics of healthy liver cells, and proceed to repair and regenerate it,” he explained. In London, the doctors drew blood from one of his arms, removed the white blood cells, and then pumped the blood back into him through his other arm. “You feel quite weak during the process,” he said. The major risk of the treatment was a side effect from a drug used to boost the body’s ability to create stem cells from white blood cells. It could cause a rupture in the spleen if too many stem cells were produced. Since undergoing the highly experimental stem cell treatment, Rodolfo has experienced no ill effects from the treatment. It will be several months before researchers can tell if the transplanted stem cells were successful in generating new, healthy liver tissue. In the meantime, Rodolfo has returned home to Miami and is recovering from the procedure. He admits it is sometimes hard to be a “medical guinea pig”. “Family members told me I was out of my mind to try this, and my dad was very anxious, but it is very important to me to find an effective treatment for myself and for others who live every day with the debilitating effects of chronic hepatitis B,” he said. “There has to be a way to beat this infection. And I’m determined to find it.” Note: Description of stem cells comes from NIH (http://stemcells.nih.gov/info/faqs.asp#whatare)

    https://www.hepb.org/research-and-programs/patient-story-telling-project/patient-stories/
  • Our Accomplishments

    Since 1991, the Hepatitis B Foundation has made tremendous strides  in making hepatitis B history! Below is a short list of accomplishments; you can read more in our annual reports, which are posted here. 2021 The Hepatitis B Foundation launched the first global registry of discrimination against people living with hepatitis B in May. The primary means for collecting patients’ accounts will be the Foundation's brief online survey, which will be supplemented over time with patient interviews. Please read more here. Our 30th Anniversary Celebration began officially with the annual Crystal Ball Gala in April. A highlight of the event was a video that told the story of the organization’s founding and growth, with comments from the founders themselves. Please see more here. The Foundation’s work with the House Appropriations Committee led to huge wins across the NIH, National Cancer Institute, CDC and the HHD Office of the Secretary. At the recommendation of the Foundation, the House Appropriations Committee added language that directly leads to increased research, more vaccination awareness, and efforts to address discrimination based on hepatitis B status. Please see more here. 2020 Despite the COVID-19 pandemic, the Foundation continued to serve people living with hepatitis B and their caregivers worldwide by providing consultation via phone, email and social media. Our team did 9,388 consults in 2020, including an 18% increase in social media consults. We also saw 2.4 million website visits. Please read more here. In ccoperation with the U.S. Food and Drug Administration, we hosted an Externally Led Patient-Focused Drug Development (PFDD) meeting in June that was focused on hepatitis B, which is the first time a PFDD session was dedicated to that disease. We were approved by the FDA to organize and conduct the meeting, which was online only due to COVID-19, making it the first exclusively in this format since the agency began holding PFDD meetings in 2012. The Blocks received the AASLD’s inaugural Distinguished Advocacy Service Award, which “recognizes service provided to the hepatology community over an extended period that raises awareness or garners public and federal legislative support and promotes liver health and quality patient care. 2019 HBF leads the national Coalition Against Hepatitis in People of African Origin (CHIPO founded in 2012), a community coalition of organizations to address the high rates of hepatitis B infection among African communities in the U.S. In August 2019, HBF convened the Princeton Workshop, a prestigious annual meeting bringing together some of the world’s thought leaders for highly focused discussions on strategies to treat hepatitis B and liver cancer. HBF was instrumental in creating the Congressional Viral Hepatitis Caucus, a bipartisan group of legislators committed to addressing viral hepatitis A, B and C. Since 2014, HBF has organized an annual Hepatitis B Hill Day, bringing up to 80 patient and provider advocates to Washington, D.C. to meet with legislators and discuss the need to prioritize hepatitis B and liver cancer. Our most Hep B Hill Day in July 2019 brought 73 participants, including 20 patient storytellers. 2018 Our Scientific and Medical Advisory Board made a formal recommendation that all Americans be tested for hepatitis B infection, in order to achieve the World Health Organization’s (WHO) ambitious goal of eliminating hepatitis B by the year 2030. Began collaboration with the CDC to create a broad scale educational initiative to promote hepatitis B awareness and testing for African immigrants across the US. This exciting project is the first of its kind to provide targeted materials to often-overlooked African immigrant communities. Successfully advocated for increased federal research opportunities for hepatitis B through NIH and DOD. This led to new targeted grants opportunities and an increase in grant proposals focusing on hepatitis B. Hep B United Philadelphia coalition, led by HBF, educated over 2,000 people, screened 150, and linked 90% of infected individuals to care. Four of the Blumberg Institute's promising research findings moved into clinical trials in 2018, including two for hepatitis B treatment, one for cancer treatment and one for cancer detection  2017 HBF published the "Roadmap for a Cure," a comprehensive research plan to find a cure for chronic hepatitis B and the diseases associated with it, including liver cancer. The Roadmap was developed with the input of of more than 30 of the world's leading experts on hepatitis B, and identifies the most promising areas of research and potential funding sources. HBF's #justB storytelling campaign was launched, releasing 20 unique stories of people living with or affected by hepatitis B. The campaign aims to increase awareness and reduce stigma by putting a human face on the disease. The Joan Block Improving Lives Fund was established in recognition of HBF co-founder Joan Block's enormous contributions to the world of hepatitis B. Joan retired as executive director of HBF in June 2017 after 25 years of service. Hep B United, a national coalition established by HBF in partnership with the Association of Asian Pacific Community Health Organizations (AAPCHO), celebrated its 5th anniversary. Since 2012, Hep B United has grown to include more than 30 local coalitions across 27 cities in 24 states and the District of Columbia. 2016 HBF awarded a 5-year competitive cooperative agreement from the U.S. Centers for Disease Control and Prevention (CDC). The new CDC grant will support its work in continuing to build the national Hep B United coalition that it established in 2012 in partnership with AAPCHO to increase screening and linkage to care rates.  HBF launched the 'HepDConnect.org' web-based program to increase awareness and provide information and support to those affected by this deadly virus, which only infects those already infected with hepatitis B. Visit hepdconnect.org HBF completed its two-year Patient Empowerment program in Haimen City, China that included more than 1,200 people chronically infected with hepatitis B who were identified in the first phase of our "Gateway to Care" campaign. Both phases were funded in part by the BMS Foundation and Haimen City CDC. HBF partnered with the Vietnam Viral Hepatitis Alliance (V-VHA) to launch a pilot a hepatitis B screening and care program in Ho Chi Minh City that has resulted in significant new funds to scale up the program. HBF medical director Dr. Robert Gish serves on the V-VHA board and is actively involved in Vietnam. HBF expanded its training programs with a Masters in Biomedical Sciences in collaboration with Geisinger Commonwealth College of Medicine, and a 6-week summer internship offered to high school students from China in partnership with the Philadelphia International Education Program.  HBF's Baruch S. Blumberg Institute recruited world-renowned cancer physician scientist, Dr. Richard G. Pestell, to join its faculty. Dr. Pestell will create and lead the Cancer and Regenerative Medicine Research Center at the Blumberg Institute.  HBF's Baruch S. Blumberg Institute scientists continue to be at the forefront of drug discovery for hepatitis B and liver cancer, as well as early detection biomarkers for primary liver cancer, the deadliest outcome of a chronic hepatitis B infection. 2015 The hepatitis B virus turns 50 this year! In February 1965, the Journal of the American Medical Association (JAMA) published the first article about the Australia Antigen (now known as hepatitis B virus) by Drs. Baruch Blumberg, Harvey Alter and Sam Visnich. Dr. Blumberg won the Nobel Prize for his discovery HBF completes its first major gifts campaign  A Nobel Challenge and raises $3 million to fund its research institute, the Baruch S. Blumberg Institute, to pioneer new ways to treat hepatitis B and liver cancer, the deadliest outcome of hepatitis B. HBF’s Baruch S. Blumberg Institute recruits 5 new internationally recognized scientists to work exclusively on hepatitis B research, which brings the total faculty and research staff to almost 50 people. This makes the Blumberg Institute the largest concentration of nonprofit scientists working on hepatitis B and liver cancer in the U.S. HBF outreach program reaches more than 1 million people from 200 countries through its hepb.org website; more than 6,000 people through email, phone and social media consults; and provides valuable information in 10 different languages. 2014 HBF completes publication of its Hepatitis B Screening and Monitoring Recommendations and Algorithm in the 5 major primary care medical journals ‒ J. American Academy of Physician Assistants (2014); J. Nurse Practitioners (2013); The Female Patient (2012); American J. of Medicine (2012); and the J. of Family Practice (2011) Hep B United, a national coalition created and led by HBF in partnership with AAPCHO since 2012, has grown to include 30 partners in 24 cities and 14 states across America with a collective reach to 4 million Asian Americans at increased risk for hepatitis B infection. HBF invited to join the international committee of experts to develop the World Health Organization’s first-ever published Management Guidelines for Hepatitis B. HBF’s Gateway to Care program in Haimen City, China reaches 1 million people. Results of the citywide public health campaign, supported in part by a competitive grant from the BMS Foundation, were published in BMC Public Health and presented at professional conferences. 2013 HBF renamed its research institute the Baruch S. Blumberg Institute in honor of Co-Founder Dr. Baruch Blumberg, who won the Nobel Prize for his discovery of the hepatitis B virus. For 20 years, Dr. Blumberg was a vital force in the development of the HBF and its research programs until his death in April 2011. HBF launched     www.LiverCancerConnect.org,  the first patient-focused website that provides information and support to those facing the challenge of primary liver cancer, which is the most serious consequence chronic hepatitis B. The Hep B United national coalition, created and co-chaired by HBF in partnership with AAPCHO, was approved for co-branding with the CDC’s first national Know Hepatitis B educational campaign. HBF successfully advocates for the rights of hepatitis B-infected individuals in the United States! Based on our reports to the CDC about many cases of institutional discrimination against hepatitis B infected healthcare workers and students, the CDC updated its recommendations to clearly state that hepatitis B should not prevent anyone from a healthcare career. These updated recommendations became the cornerstone of a landmark settlement by the U.S. Dept. of Justice on March 5, 2013 that officially recognizes hepatitis B as being protected under the Americans with Disabilities Act (ADA). 2012 HBF’s research institute represents the largest concentration of nonprofit scientists in the U.S. working on the problem of hepatitis B and liver cancer. To date, HBF’s research institute scientists are discovering new ways to attack the hepatitis B virus that could lead to promising new targets for drug discovery and an eventual cure. HBF established a new national coalition Hep B United in partnership with the Association for Asian and Pacific Community Health Organization (AAPCHO) to promote and leverage the success of community-based coalitions across the country in the fight against hepatitis B and liver cancer. HBF is helping to change clinical practice and national policy with published articles in peer-reviewed journals that highlight the underestimation and undertreatment of hepatitis B in the U.S., and the tremendous need to improve screening for this silent but deadly liver infection. 2011 Hepatitis B Foundation Celebrates 20th Anniversary Watch the short YouTube video that captures the 20 year history of the Hepatitis B Foundation through old photos and interviews with the founders and Nobel Laureate Dr. Baruch Blumberg. View now! Merck & Co. donated its entire Natural Products Collection to the HBF’s research institute that provides access to a treasure trove for potential new therapies. As many as 50% of all medicines in use today came from natural products. A major American diagnostic company licensed the use to develop HBF’s HCC biomarker in the United States for the early detection of liver cancer; this same biomarker is already being used in China. HBF established its first international public health program in Haimen City, China to conduct a citywide hepatitis B education and outreach effort for the 1 million residents. This was made possible by a 3-year competitive grant from the BMS Foundation. 2010 Groundbreaking for nine new labs to accommodate the success of research entrepreneurs and a teaching lab for young scientists occurred in June. HBF was part of the IOM Report on Hepatitis and Liver Cancer from inception to fruition by providing testimony and having three of our medical advisors play a major role in this landmark report that set the stage for how the US will manage HBV and liver cancer in the next decade. HBF was at the forefront in working with Congressional members to advocate for HR 3974, the Hepatitis and Liver Cancer Prevention and Control Act 2009, a comprehensive bill that addresses the needs of more than five million Americans living with chronic hepatitis B. 2009 The highly competitive GSK IMPACT Award and $40,000 cash prize was awarded to the HBF for its comprehensive Outreach Program that helps improve access to care. John Ellis, a 17-year old cyclist from Florida took his devastating diagnosis of hepatitis B and turned it into an awareness campaign with his Believe in the Cure Cycling Tour of 1,287 miles from Pensacola to Philadelphia and raised $50,000 towards a cure! HBF convened the first National Pediatric Hepatitis B Workshop gathering an expert panel of pediatric liver specialists to discuss the management of children with chronic hepatitis B. Recommendations were published October 5, 2009 in Pediatrics. 2008 HBF organized a historic Library of Congress Symposium on HIV and HBV during National Hepatitis B Awareness Week to address the challenges in HIV vaccine development. Dr. Andy Cuconati, head of HBF’s Drug Discovery Program discovered a new compound that specifically suppresses release of HBV from infected liver cells. The Gateway to Care and the Philadelphia Task Force on Hepatitis B was launched to improve access to care through education and free screenings.   2007 HBF becomes sponsor of International HBV Meeting. HBF High School Science Enrichment Program is established. 2006 HBF opens its new Pennsylvania Biotechnology Center of Bucks County, created and owned in partnership with Delaware Valley College. 2005 HBF provides impetus for historic advocacy successes: First-ever National HBV Act introduced in Congress; first Congressional Briefing on HBV; and first National HBV Awareness Week in May called for by Congress. 2004 HBF establishes the Institute for Hepatitis and Virus Research (now the Baruch S. Blumberg Institute), which houses the HBF labs. HBF and University of Oxford Training Program is created - one of the first of its kind in the United States. Drexel University becomes the new academic partner of the HBF. 2003 Pennsylvania Governor Mark Schweiker presents a check for $7.9 million to HBF and Delaware Valley College to build a biotechnology research complex. HBF becomes a charter member of the National Viral Hepatitis Roundtable in Washington, D.C. 2002 HBF receives a $400,000 National Institutes of Health (NIH) grant to fund a total reconstruction of its website - www.hepb.org. 2001 HBF celebrates our 10th Anniversary! HBF Co-Founders Still Working Together (2001) The past ten years have only strengthened the commitment of the HBF Founders! L to R: Tim Block, Jan Witte, Paul Witte, and Joan Block. 2000 The "Bruce Witte Research Fellowship" is established to fund a young scientist pursuing hepatitis B research. College summer research internship program is established. 6th Annual Princeton Workshop identifies "National Research Priorities for hepatitis B". 1999 $1.5 million PA state grant is received to support HBF outreach efforts, promote hepatitis research, and to conduct statewide viral hepatitis trainings. 1998 HBF offices and labs move under one roof to the new Jefferson Center for Biomedical Research, Doylestown,  1997 HBF outreach campaign results in PA Governor Tom Ridge declaring the first Hepatitis Awareness Month. O'Liver, the HBF liver mascot, makes its debut in a televised press conference on the Capitol in Harrisburg, PA HBF partners with Jefferson Medical College and Delaware Valley College to help establish a new research center in Doylestown, PA PA Governor Ridge Proclaims Hepatitis Awareness Month (1997) HBF President Joan Block (seated on right) and HBF Medical Advisor Dr. Kenneth Rothstein (standing on right) meet Governor Ridge.   Pa. Governor Ridge Proclaims Hepatitis Awareness Month (1997) HBF President Joan Block (seated on right) and HBF Medical Advisor Dr. Kenneth Rothstein (standing on right) meet Governor Ridge. 1996 The first official HBF office is opened in Jenkintown, Pa. HBF goes on-line, creates a website (www.hepb.org) and is flooded with e-mails from around the world. Many new educational materials are developed to respond to the increasing requests for information. HBF advocacy efforts result in PA legislature passing Act 15 that adds the hepatitis B vaccine to the list of immunizations required for school entry. First HBF Gala Honors Distinguished Leaders (1996) L to R: Prof. Raymond Dwek, Dr. Joseph Gonnella, Mr. Harvey Rich, Dr. Nat Brown, and U.S. Congressman James Greenwood.   1995 HBF invites 25 of the nation's leading scientists and clinicians to participate in the first Princeton Workshop, which is focused on hepatitis B therapeutic research. HBF reports that lamivudine is a promising new oral drug against hepatitis B. Scientific Leaders Attend First Princeton Workshop (1995) Sitting L to R: P. Marion, T. Block, J. Hoofnagle, F. Chisari, W. T. London, C. Rogler Standing L to R: D. Averett, D. Standring, C. Seeger, P. Cote, B. Gu, D. Ganem, R. Boehme, J. Summers, H. Isom, W. Mason, W. Gerlich, C. Young, J. O'Connell, R. Lanford, B. Rennant (missing from photo: N. Brown, L. Johnson, J. Pugh, M. Roggendorf, L. Tyrrell.)   1994 The HBF Research Lab is established at Jefferson Medical College, Philadelphia, PA. Hepatitis B Foundation Lab Opens (1994) HBF Senior Scientist Dr. Xuanyong Lu (center) demonstrates technique to research associates. 1993 A PA state grant is received to produce two Emmy-nominated television Public Service Announcements to promote hepatitis B awareness. Drs. Timothy Block, Baruch Blumberg, and Raymond Dwek discover a new anti-HBV drug at Oxford University.  New Hepatitis B Drug Discovered (1993) Drs. Baruch Blumberg (right) Timothy Block (left) and Raymond Dwek (not pictured) collaborate on hepatitis B research at the University of Oxford. 1992 A PA state grant received to produce HBF video, "Someone You Know Has Hepatitis B", which includes an introduction by Dr. Nancy Snyderman of Good Morning America. The B Informed Newsletter is launched. 1991 HBF incorporates as a 501(c)(3) nonprofit organization. First public HBF fundraiser in New Hope, Pa. raises $17,000. PA State Senator Jim Greenwood introduces the Hepatitis B Prevention, Research and Treatment Act into legislature. HBF reports that interferon alpha, an injectable drug, shows promise against hepatitis B.  

    https://www.hepb.org/about-us/our-accomplishments/