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  • Why Raised Voices, Phone Calls and Letter Writing Are Critical to Eradicate Hepatitis B

    By Christine Kukka Getting the medical care we need requires advocacy, because in the U.S. the quality of our healthcare--and even how long we live--depends on our income, ethnicity, gender and where we live. That is especially true when we live with hepatitis B. Many affected by hepatitis B are not endowed with money, privilege or political power. Most of us are immigrants and people of African and Asian descent. This infection illuminates our country's racial divides in healthcare. Asian-Americans, for example, have liver cancer rates 13-times higher than white Americans because they were never tested for hepatitis B, diagnosed or treated until it was too late. Many of us are gay or injecting drug users. We are often uninsured or under-insured, which leaves us unable to pay for testing or treatment. Our doctors, who often work in healthcare systems focused more on the bottom line than patient care, see too many patients in too little time. They may not know to screen us for hepatitis B, or monitor us properly and refer us for treatment when the infection damages our livers. Despite good intentions, we live with a broken healthcare system and like any political system it requires the actions of patients, voters and advocacy organizations to improve. Participants Perform a B A Hero Chant The Hepatitis B Foundation and national coalitions including Hep B United are working within the political system to make healthcare more equitable and accountable.  They're fighting to get more funding so the U.S. Centers for Disease Control and Prevention and the National Institute of Health have more resources to eradicate hepatitis B. Recently, these advocates scored a victory.Earlier this year, they and others asked the U.S. Centers for Medicare & Medicaid Services (CMS) to expand Medicare coverage to pay for hepatitis B testing in at-risk seniors and disabled people. Being of Asian or African descent, an immigrant, gay, having had numerous sexual partners or a history of

    http://www.hepb.org/blog/raised-voices-phone-calls-letter-writing-critical-eradicate-hepatitis-b/
  • You’ve Lost the Hepatitis B Surface Antigen, Go Celebrate, But Keep Monitoring

    By Christine Kukka Image courtesy of stockimages at FreeDigitalPhotos.net After years of living with “inactive’ chronic hepatitis B—with low viral load and no signs of liver damage--some patients may finally lose the hepatitis B surface antigen (HBsAg) and even develop surface antibodies. This event merits a celebration and a huge sigh of relief, but if you think you will never have to get another blood draw or worry about your liver, think again. We hate to be the bearer of bad news, but hepatitis B really never goes away. Image courtesy of stockimages at FreeDigitalPhotos.net Think herpes, mono, or chicken pox and shingles. Children infected with chickenpox get rid of the infection and the ugly blisters, but very small amounts of the chickenpox (varicella) virus remains in the spinal nerves. As we grow older and our immune systems weaken with age,  our bodies aren't able to suppress the varicella virus any more and it reactivates, causing painful shingles. The hepatitis B virus (HBV) behaves in the same way. When we lose HBsAg and even develop surface antibodies (anti-HBs), there are still HBV lurking in our livers. When we’re healthy, our immune systems suppress the virus and prevent any reactivation, but old age or another disease or medical condition can weaken our bodies and allow the viral infection to reactivate. So, even after we clear HBsAg, we need to stay vigilant and continue to get our liver health monitored regularly. Here is what you need to know: First, what are my chances of ever getting rid of HBsAg and developing the surface antibody? It can happen, especially in older adults after a long period of “inactive” hepatitis B infection. About 1 to 3 percent of people with chronic hepatitis B lose HBsAg each year, and about half of all people with chronic infections who live up to age 75 will lose HBsAg, depending on the amount of HBV DNA in their blood. Your chances of losing HBsAg and developing the surface antibody increase if you have

    http://www.hepb.org/blog/youve-lost-hepatitis-b-surface-antigen-go-celebrate-keep-monitoring/
  • Advocates Raise Awareness About African Immigrants' High Risk of Hepatitis B

    Volunteers at Boston's National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day By Christine Kukka For years, public health advocates have struggled to educate both doctors and Asian-Americans about the high risk of hepatitis B that this ethnic group faces. It’s been a slow, uphill battle marked by moderate success. Despite the fact that one in 12 Asian-Americans and Pacific Islanders (AAPI) is chronically infected with hepatitis B, more than two-thirds of them haven’t been screened and don’t know they’re infected. But another group of immigrants and their children—from Sub-Saharan Africa—are also at high risk of hepatitis B and have received even less attention from public health advocates and the medical community across the U.S. Of foreign-born U.S. residents with hepatitis B, about 58 percent are AAPIs and 11 percent come from Africa. In the past 20 years, the number of immigrants–primarily from war-torn Somalia, Nigeria, Ethiopia, Ghana, Kenya, and Egypt--have increased more than 750 percent. There are now 1.6 million African immigrants in the U.S. and 10 percent are believed to be infected with chronic hepatitis B. In the largest study of its kind, 955 African-born residents living in New York City were screened for hepatitis B between 2011 and 2013. Doctors found 74 percent had been infected with hepatitis B in the past, and 9.6 percent had current, chronic or long-term infections. Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City “I believe African immigrants have been underserved by our healthcare system,” observed Ponni V. Perumalswami, MD, assistant professor of medicine and director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City and lead researcher of the New York City study. “Similar to Asian-Americans, African immigrants are often not screened or referred to treatment. Additionally, many

    http://www.hepb.org/blog/advocates-raise-awareness-african-immigrants-high-risk-hepatitis-b/
  • Changing Jobs? How to Find the Best Employer Health Plan When You Have Hepatitis B

    Image courtesy of stockimages at FreeDigitalPhotos.net By Christine Kukka You’ve just landed a new job with a better paycheck, but how do you make sure your new health plan covers the tests, doctor visits and medications needed for your or a family member’s hepatitis B? Many people with chronic medical conditions find switching health plans can affect the quality of their medical care and requires a careful calculation of what their out-of-pocket healthcare costs may be in the year ahead.  There’s a lot to consider and doing your homework is essential to finding the best employer insurance plan for your health and your wallet. Two key questions to ask are: Can I keep the same family doctor and/or liver specialist?  You don’t want to lose the expertise and personal rapport you may have developed with a provider. And, hepatitis B specialists are few and far between in many regions. Find out what doctors and specialists the new plan covers. Some plans offer several options, so find out which one covers your doctor. If the new plan doesn’t include your liver specialist, are you willing to pay extra to stay with him or her? For more information about health insurance terms and shopping for a plan, click here. How do you make sure the new plan covers your drugs and lab tests? And how do you find this out without disclosing your hepatitis B? First, you cannot be denied coverage — or a job — because of your hepatitis B. The Affordable Care Act prohibits employers from denying anyone coverage because of a pre-existing health condition. However, you need to do your homework and look carefully at the deductibles, copays and coinsurance a plan offers. When you are offered the job, or when you go for your benefits interview with the HR rep after accepting the job, ask for a copy of their health insurance plan and read it over carefully. It may be available online.  Ideally, you want coverage that covers the most and costs the least after you add up

    http://www.hepb.org/blog/changing-jobs-find-best-employer-health-plan-hepatitis-b/
  • Newly Diagnosed with Hepatitis B? Acute or Chronic? Learning the Hep B Basics

    Image courtesy of dream designs at FreeDigitalPhotos.net If you’ve just been diagnosed with hepatitis B after a routine blood test or following a blood donation, you may be feeling overwhelmed with information about this complicated infection and references to acute or chronic hepatitis B. Here is an explanation of these two terms and what happens when you’re first infected with the hepatitis B virus (HBV). Hepatitis B is transmitted through blood and sexual fluids. It can be spread during unprotected sex, unsafe medical procedures, exposure to blood that enters your body through a cut,  or by sharing personal items such as razors, body jewelry or toothbrushes. Most commonly it is spread during childbirth when the mother is infected. What is a chronic infection? When we’re infected as newborns or young children, our immature immune systems don’t notice or fight the virus and it travels to our liver and begins reproducing. With no opposition from our immune systems, a hepatitis B infection can continue for years. When a hepatitis B infection lasts longer than six months, it is considered a chronic or long-term infection. Most people with chronic hepatitis B were infected at birth or during early childhood. Immunization with the hepatitis B vaccine and hepatitis B immune globulin (HBIG), if available, within 12 to 24 hours of birth can break this mother-to-child infection cycle, but sometimes the birth dose of the hep B vaccine,  and more often HBIG, is not always available around the world. The birth dose must be followed with the remaining doses of the vaccine, often given as part of a combination vaccine according to schedule. Here are the U.S. and International hep B vaccine schedules.  What is an acute infection? When we’re infected with HBV as healthy adults, about 90 percent of us are able to get rid of the infection within six months. It can take up to six months for our immune systems to generate antibodies and get rid of the infection in our

    https://www.hepb.org/blog/newly-diagnosed-with-hepatitis-b-acute-or-chronic/
  • Lena Allweiss, PhD

    FellowDepartment of Internal Medicine, Viral Hepatitis Unit, University Medical Center Hamburg-Eppendorf, Germany Lena Allweiss is a research fellow at the gastroenterology department of the University Medical Center Hamburg-Eppendorf. Her research area is viral hepatitis, in particular chronic hepatitis B and D infections. She received her diploma in human biology from the Philipps-University in Marburg in 2009. During her PhD in Hamburg she started to investigate the molecular mechanisms of chronic hepatitis B infection. She is a member of the International Coalition to Eliminate HBV (ICE-HBV) and the German Center for Infection Research (HBV Cure Project). Her research focuses on the interactions of the hepatitis B virus with the host using mice with humanized livers as a model. She is particularly interested in investigating the viral minichromosome, the cccDNA, and how it is affected by the host innate immune responses and exogenous antiviral treatments. Read the journal picks of the month from our Emerging Scholars Scientific and Medical Advisory Board here.  

    https://www.hepb.org/news-and-events/reports/emerging-scholars-scientific-and-medical-advisors/lena-allweiss-phd/
  • Annual Gala raises a record amount for the local Hepatitis B Foundation

    The first in-person fundraiser for the Doylestown organization, after two years of exclusively virtual fundraisers, was well-attended. Rev. Jason Crum Escalera, recipient of the Community Commitment Award and Chari A. Cohen DrPH, MPH, Senior Vice President of the Hepatitis B Foundation Doylestown, Pa., April 27, 2022 – The Hepatitis B Foundation Gala, an annual fundraiser and celebration of the nonprofit’s people and achievements, was held on April 1 at The Warrington, a popular event venue in Warrington, Pa. Gilead Sciences Inc. was the presenting sponsor of this record-breaking event. Not only did nearly 280 people attend the Gala, they and the event’s sponsors contributed more than $227,000, which is far greater than the amount raised at any previous Gala. Additionally, it was an in-person event for the first time in three years because COVID-19 meant the Foundation was forced to hold the Gala online in 2020 and 2021. The guests enjoyed a great variety of casino games and a robust silent action. The latter was a huge success with items and services from donors such as The Philadelphia Symphony Orchestra, Leading Edge Aviation and Bong Pil Yang, who contributed stellar artwork by Yong Hun Kim. U.S. Rep. Brian Fitzpatrick provided a Day at the Capital and others donated a collection of fine wine, their vacation home for a weekend and a wide variety of other goodies. A focus of the evening was special recognition for President Timothy M. Block, PhD, one of the organization’s co-founders, who will transition in June from president to executive chair of the Board of Directors and begin a sabbatical at Yale University. Dr. Block was surprised and expressed appreciation for all of the attention. “We were thrilled to have so many of our loyal supporters and staff come together to honor the great people who have made major contributions to the fight against hepatitis B,” Jean Holmes, vice president of institutional advancement, said. “We owe a huge thank you to everyone who came, participated in the silent auction, donated, and shared well-wishes with our distinguished guests and Dr. Block.” Two of our region’s most-respected elected officials, Sen. Steve Santarsiero and Rep. Fitzpatrick, were invited to speak. The Congressman and Senator both spoke admiringly about the Hepatitis B Foundation, Dr. Block and his wife Joan, who co-founded the organization. D. Lorne Tyrrell, MD, PhD, recipient of the Baruch S. Blumberg Prize and Timothy M. Block, PhD, President and Founder of the Hepatitis B Foundation Following the celebration of Dr. Block, he turned the spotlight toward this year’s honorees, a major figure in hepatitis B research and a very well-known figure among the Foundation’s wonderfully supportive community of people living with hepatitis B. The Baruch S. Blumberg Prize for Outstanding Contributions to Hepatitis B Research was awarded to D. Lorne Tyrrell, MD, PhD. Dr. Tyrrell is currently a Distinguished University Professor in the Department of Medical Microbiology and Immunology and the University of Alberta. The Community Commitment Award was presented to Rev. Jason Crum Escalera, a #justB Storyteller. Rev. Crum Escalera works to educate young people, particularly high school students, about prevention and delivers testimonials of his own hopes and strength. He is well known in the hepatitis B and HIV advocacy communities and strives be “a voice to the voiceless around the world.” About Hepatitis B:  The most common serious liver infection in the world, it is caused by the hepatitis B virus, which attacks and injures the liver. Each year up to 1 million people die from hepatitis B worldwide, even though it is preventable and treatable. 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. Hepatitis B is a “silent epidemic” because most people do not have symptoms when they are newly or chronically infected. Thus, they can unknowingly infect others and continue the spread of hepatitis B. For people who are chronically infected but don’t have any symptoms, their livers are still being silently damaged, which can develop into serious liver disease such as cirrhosis or liver cancer. About the Hepatitis B Foundation: We are 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. Founded in 1991, the Hepatitis B Foundation is based in Doylestown, Pa., with an office in Washington, D.C. To learn more, go to www.hepb.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/annual-gala-raises-a-record-amount-for-the-local-hepatitis-b-foundation/
  • Hepatitis B Foundation supports launch of new global online forum dedicated to supporting people with hepatitis B, connecting with health experts

    Doylestown, April 13, 2021 – The Hepatitis B Foundation is pleased to support the official launch of HepBcommunity.org, a new global online forum dedicated to supporting those living with and affected by hepatitis B. Founder of the new online forum and Westmead Hospital’s hepatitis B researcher, Dr. Thomas Tu said, “Hepatitis B affects almost 300 million people globally and kills 800,000 people per year through liver cancer or liver failure.” “While hepatitis B remains incurable, it can be managed and treated. But, people with hepatitis B face social stigma and discrimination, discouraging them from seeking medical help that could prevent progression of their illness to serious disease like liver cancer,” Tu added. Living with hepatitis B himself, Tu founded HepBcommunity.org for affected people worldwide to connect with each other, form support networks, and get advice from verified medical experts and researchers. Westmead Hospital’s Storr Liver Centre and the Hepatitis B Foundation have provided start-up funding and coordinate the forum with support from the World Hepatitis Alliance. The site is peer-led, volunteer run and is free to join. Already, more than 200 members from all over the world have joined. Chari Cohen, DrPH, MPH, senior vice president, Hepatitis B Foundation, believes, “The new forum is critically important because people can anonymously seek advice about how to live with hepatitis B, and what they can do to protect their liver and long-term health.” “The ultimate goal is to save lives,” adds Su Wang, MD, MPH, president, World Hepatitis Alliance. “This is a safe and friendly online community that gives people around the world the information and support they need to live successfully with hepatitis B.” The HepBcommunity.org forum, however, is not intended to replace doctor and specialist consultations for the medical care or treatment of hepatitis B. # # # About the Hepatitis B Foundation (HBF): The Hepatitis B Foundation, headquartered in the United States, is the nation’s leading non-profit organization solely dedicated to finding a cure for hepatitis B and improving the quality of life for those affected worldwide through research, education, public health and patient advocacy. To learn more, go to www.hepb.org, find us on Facebook at facebook.com/hepbfoundation, follow us on Twitter@HepBFoundation, read our blog at hepb.org/blog  or call 215-489-4900.    About HepBcommunity.org: HepBcommunity.org is a global online forum that represents a safe and free platform created to support people living with and affected by hepatitis B, and to connect them with health experts and scientists in the field. It is funded and coordinated by the Storr Liver Centre, Westmead Hospital Foundation, and Hepatitis B Foundation with support from the World Hepatitis Alliance. To learn more, go to HepBcommunity.org.   About the Storr Liver Centre: The Storr Liver Centre is one of the top research and patient care centers in the world that aims to understand liver disease and liver cancer, with the ultimate goal of developing effective preventive and curative strategies. We have active research programs in liver cancer, metabolic liver disease, and hepatitis B virus infection. To learn more, please contact Dr. Thomas Tu (t.tu@sydney.edu.au) or Prof. Jacob George (Jacob.george@sydney.edu.au).   About the Westmead Hospital Foundation (WHF): Westmead Hospital Foundation (WHF) is the principal fundraising organisation for Westmead Hospital. For 31 years, Westmead Hospital Foundation has provided (through generous corporate and community donations and legacy gifts) support for medical research and patient care at Westmead Hospital. For more information, visit us westmeadhf.org.au, follow us on Facebook facebook.com/Westmead/, on Instagram instagram.com/westmeadfdn/ or call +61 2 8890 6289.   About the World Hepatitis Alliance (WHA): The World Hepatitis Alliance (WHA) is an international umbrella organisation with over 300 members in 100 countries. WHA represents the 325 million people living with viral hepatitis worldwide. WHA strives to support and promote the voices of the people and communities affected by viral hepatitis, to raise the profile of viral hepatitis and to establish comprehensive hepatitis strategies in all countries. Through better awareness, prevention, care, support and access to treatment, the ultimate goal is to work with governments to eliminate these diseases by 2030. To learn more, go to worldhepatitisalliance.org.

    https://www.hepb.org/news-and-events/news-2/hepatitis-b-foundation-supports-launch-of-new-global-online-forum-dedicated-to-supporting-people-with-hepatitis-b-connecting-with-health-experts/
  • Hep B United to honor Corinna Dan, former HHS official

    Doylestown, Nov. 19, 2020 – Hep B United and the HBV Forum are pleased to name Corinna Dan, RN, MPH, as the 2020 recipient of the Hepatitis B Federal Champion Award for her commitment to eliminating hepatitis B. Ms. Dan will receive the award at the Hep B United Virtual Summit on Dec. 4. The Hepatitis B Federal Champion Award recognizes individuals at the national level for their outstanding contributions to communities impacted by hepatitis B. Past award recipients include Hepatitis B Congressional Champions U.S. Sen. Mazie K. Hirono of Hawaii and U.S. Rep. Grace Meng of New York. Ms. Dan is being recognized for her long-time championship of policies and programs to prevent hepatitis B and improve the lives of communities disparately impacted by the disease. As former Senior Policy Advisor for the Office of Infectious Disease and HIV/AIDS Policy at the U.S. Department of Health and Human Services, Ms. Dan worked across federal departments in partnership with community organizations to coordinate the national response to the viral hepatitis epidemics in the United States. Ms. Dan worked to improve awareness and develop policy recommendations to eliminate mother-to-child or perinatal transmission of hepatitis B infection. She organized the first technical consultation, convening federal agencies, hepatitis B, and maternal and reproductive health experts around the country to identify model programs and policies. “Corinna's work in hepatitis B has been instrumental in the fight for elimination and informing outreach and advocacy for vulnerable populations," said Jeffrey B. Caballero, co-chair Hep B United and executive director, AAPCHO. "She has been a true partner to Hep B United and ensuring that our coalition's priorities are addressed at the highest levels of HHS. I have been honored to work alongside Corinna, and I thank her for her outstanding leadership and dedication to hepatitis B elimination.” Veronica Miller, PhD, co-chair of the HBV Forum Steering Committee and executive director of the Forum for Collaborative Research, said: “Corinna’s commitment to sound policies and effective programs to combat viral hepatitis is inspiring. We celebrate her tireless leadership in bridging ‘boots-on-the-ground’ implementers with policy makers to promote public health,” Before her time at HHS, Ms. Dan served as a Hepatitis B Policy Fellow with AAPCHO, focused on addressing hepatitis B-related health disparities and promoting projects and amplifying the voices of partners representing the African immigrant and Asian American and Pacific Islander communities. About Hepatitis B: Hepatitis B is one of the world’s most common infections and the primary cause of liver cancer, which is the second-leading cause of cancer death in the world. Up to 292 million are chronically infected, and almost 1 million people die each year from hepatitis B-related liver failure and liver cancer. In the U.S., one in 20 Americans has been infected with hepatitis B, and up to 2.2 million are chronically infected. The hepatitis B virus is transmitted through blood, unprotected sex, unsterile needles, and from an infected mother to her newborn due to blood exchange during delivery. Although hepatitis B is preventable and treatable, there is still no complete cure for this deadly liver infection. About Hep B United: Hep B United is a national coalition established by the Hepatitis B Foundation and the Association of Asian and Pacific Community Health Organizations (AAPCHO) to address the public health challenge of hepatitis B by increasing awareness, screening, vaccination and linkage to care for all Americans, with a particular focus on Asian-American and Pacific Islander populations that are disproportionately impacted. To learn more, visit www.hepbunited.org. 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 is based in Doylestown, Pa., with an office in Washington, D.C. To learn more, go to www.hepb.org, read our blog at hepb.org/blog, follow us on Twitter @HepBFoundation, find us on Facebook at facebook.com/hepbfoundation or call 215-489-4900. To donate, contact Jean Holmes at 215-489-4900 or jean.holmes@hepb.org. About the Association of Asian Pacific Community Health Organization (AAPCHO): AAPCHO is a national association of community health organizations dedicated to promoting advocacy, collaboration, and leadership that improves the health status and access of Asian Americans, Native Hawaiian, and other Pacific Islanders in the United States. To learn more, visit www.aapcho.org.

    https://www.hepb.org/news-and-events/news-2/hepatitis-b-foundation-to-honor-corinna-dan/
  • Hepatitis B Online Support Groups

    For immediate assistance with general mental health or a crisis, in the U.S. you can call 988, and globally you can find resources here.  Support Groups There are some good Internet Support Group Listservs dedicated to hepatitis B. These Lists provide emotional support and practical help for those living with hepatitis B. There are also organizations that can refer individuals to traditional in-person support groups.   Internet Support Groups Hep B Community HepBCommunity.org is a global peer-led, volunteer-driven forum to support those living with and affected by hep B supported by the Hepatitis B Foundation (USA) and Westmead Hospital Foundation (AU). We are dedicated to connecting people affected by hep B with each other and with verified experts in the field who provide trustworthy and accurate advice. HBV Adoption Support List Adoptive or biological parents of children living with hepatitis B are invited to participate. This is a restricted list to protect the privacy of parents and children, and requires pre-approval by the list owners to join. Update: This group has moved to Facebook and is currently set to private. Please email info@hepb.org for more information.  If you know of any other online support groups, please email us at info@hepb.org. 

    https://www.hepb.org/resources-and-support/online-support-groups/