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  • Do You Forget Your Daily Hepatitis B Antiviral? Why We "Forget" Our Meds, and How to Improve Compliance

    Image courtesy of foto76 at FreeDigitalPhotos.net By Christine Kukka Your daily antiviral pill can save your life when you have liver damage from chronic hepatitis B. Entecavir or tenofovir (Viread) quickly reduce the amount of virus in your liver and the damage it causes. All you have to do is take it. Every day. But 20 to 30 percent of prescriptions are never filled, and about 50 to 70 percent of us don’t take our medications as prescribed. When we stop taking our daily antiviral, hepatitis B can reactivate and threaten our health. In one study, researchers provided 100 hepatitis B patients with an entecavir pill dispenser that monitored whether or not they took their daily pill over a 16-week period. They found about 70 percent of patients took their antiviral pill as prescribed more than 80 percent of the time -- which means these patients were “medication compliant.” Those who missed taking their antivirals more than 20 percent of the time--and were "noncompliant"--tended to be younger and had indifferent attitudes about whether or not the antiviral was really needed or would work. Image courtesy of Carlos Porto at FreeDigitalPhotos.net According to experts, whether we are "medication compliant" or not depends on how much trust we have in our doctors. If we like our healthcare provider and feel comfortable asking questions, we’re much more likely to take our medication on time. And, if our friends and family support and encourage us, we’re even more inclined to take our medication as prescribed. "The trust I have in my doctor is a big factor," said a member of the Hepatitis B Support List. "It is important to find a doctor who understands hepatitis B and is willing to work with me in terms of explaining what the options are and what the best approach is in managing my condition." "I know antivirals won't cure me," another email list member wrote, "but I'm committed to staying healthy and productive as long as God permits."However, people need more

    http://www.hepb.org/blog/forget-daily-hepatitis-b-antiviral-forget-meds-improve-compliance/
  • Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace

    Image courtesy of Taoty at FreeDigitalPhotos.net By Christine Kukka Blog reviewed and deemed accurate Jan. 2023. For years, people with pre-existing conditions like chronic hepatitis B struggled to get health insurance. News stories and Michael Moore’s documentary Sicko highlighted insurance companies’ refusal to cover pre-existing conditions and their practice of inflating premium prices if consumers had chronic health problems. Outraged by industry efforts to cover only low-cost, “healthy” consumers, lawmakers banned discrimination  against pre-existing conditions in the Affordable Care Act (ACA - Obamacare). The ACA’s Healthcare Marketplace website promises, “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer.” While health plans sold on the marketplace can’t openly refuse to insure people with pre-existing conditions, some have devised an insidious way to discourage people with hepatitis B from buying their policies. They have dramatically increased the copays consumers pay out-of-pocket for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately make their health plans unaffordable for people with chronic hepatitis B. When health insurers design plans, they assign each prescription drug a price “tier.” A low-cost generic antibiotic may be a Tier 1 while a new, brand-name drug is assigned a pricier Tier 4 or 5 ranking. A review of several Silver Plans sold on the marketplace shows entecavir and Viread (tenofovir) prices can reach up to $500 a month after the plan’s deductible is met. This deliberate over-pricing of certain drugs to deter people with chronic conditions from buying a health plan is called “adverse tiering” and it violates the ban against discriminating against pre-existing conditions. For example, a survey of Silver Plans sold on the marketplace in one region found one

    http://www.hepb.org/blog/help-stop-insurers-from-over-charging-patients-for-hepatitis-b-drugs-on-the-healthcare-marketplace/
  • I’m in love, when and how do I tell my (prospective) partner that I have hepatitis B?

    This is not an easy situation, and it is a challenge that is shared by many people living with hepatitis B. Before you share your hepatitis B status, you should be prepared. Make sure you are well-informed, because once you share the information, there will be questions you’ll need to answer. Have easy-to-understand resources, like Hepatitis B Foundation website pages, fact sheets or blogs, flagged or printed and ready to share. Additionally, you need to be prepared mentally for all sorts of reactions (both yours and theirs). People may feel supportive, surprised, fearful, or even angry. It is a good idea to talk to others with hepatitis B before you have this conversation, to get suggestions and advice. Talking to someone who has experienced this can help – and there are many people at www.hepbcommunity.org who will have had to disclose their hepatitis B to partners and other loved ones. Regardless of how the situation unfolds, please know that hepatitis B does not define who you are or what you can do! And be prepared that your relationship may change. If you find that your prospective partner is not receptive, you may learn that you’re better off without this person, as there are many challenges occurring in a lifetime. It’s important to have a supportive partner! You can find in-depth response to this important question on these blog articles: Romance in the Air? Take a deep breath and disclose How do I Share My Hepatitis B Status Dating and Hepatitis B – A personal perspective     Find more Frequently Asked Questions here.    Page updated 12/27/2022

    https://www.hepb.org/what-is-hepatitis-b/faqs/im-in-love-when-and-how-do-i-tell-my-prospective-partner-that-i-have-hepatitis-b/
  • Preparing for College, Dating and Disclosing Hepatitis B

    Image courtesy of jesadaphorn at FreeDigitalPhotos.net When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner. I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Years have passed, and youthful passions being what they are, no one ever rejected her after her hepatitis B disclosure. When I asked her recently about how she has handled disclosing, she gave me the condescending but kind look that young adults give their parents. “I’ve always disclosed my infection,” she said. “Once I know they are someone I would like a relationship with, I start out by asking if they’ve been immunized for hepatitis B and explain that I have it. I guess I’m lucky, because nearly everyone my age has been vaccinated.” Her first partner didn’t care and assumed he had been. (That's not very reassuring, I told her.) The second one, refreshingly cautious in one so young, dug out his immunization papers just to make sure. Her current boyfriend is positive he was immunized. “I’m lucky because my viral load is undetectable and as far as I know no one has ever caught it from me,” she explained in youthful, misguided optimism. I take a deep breath and remind her that hepatitis B rarely causes any noticeable side effects and she must consider herself capable of infecting others despite her low viral load. “I know, I know,” she replied. “I know this would be harder if I had a high viral load, or if the guy I was dating wasn’t vaccinated.” I suspect her low viral load has freed her from constant worry about infecting others, as well as the

    http://www.hepb.org/blog/preparing-for-college-dating-and-disclosing-hepatitis-b/
  • HBF applauds President Biden’s Memorandum denouncing racism, xenophobia, and intolerance against Asian Americans and Pacific Islanders

    January 27, 2021 - The Hepatitis B Foundation applauds President Biden’s Memorandum denouncing racism, xenophobia, and intolerance against Asian Americans and Pacific Islanders, which increased during the COVID-19 pandemic. The racist and inflammatory terms used to attack and blame Asian American communities for the cause of the pandemic exacerbates racial health inequities and discrimination against populations that continue to face barriers to health care access and are at increased risk of highly stigmatized conditions like chronic hepatitis B infection. The memorandum encourages agencies to consult with public health experts, AAPI community leaders, or AAPI community-serving organizations to ensure an understanding of the needs and challenges faced by AAPI communities. The Hepatitis B Foundation applauds this timely commitment to mitigate inequalities among AAPIs especially since the COVID-19 pandemic has disproportionately affected Native Hawaiians and Pacific Islander communities. The Hepatitis B Foundation looks forward to working with the Biden Administration, community and federal partners, and other key stakeholders to address the significant disparities and inequalities affecting the Asian American and Pacific Islander communities like disproportionate hepatitis B-related mortality rates.

    https://www.hepb.org/news-and-events/news-2/hbf-applauds-president-bidens-memorandum-denouncing-racism-xenophobia-and-intolerance-against-asian-americans-and-pacific-islanders/
  • Diagnosed with Hepatitis B? Do You Need Treatment?

    When people learn they are infected with hepatitis B, the first thing they want to know is “what can I take to get rid of this disease?” It can be complicated, and what can be even more difficult to understand is that during different stages of the disease there may be absolutely no benefit from currently available treatments. Just diagnosed with HBV? Are you acute or chronic?  First, if you have just been diagnosed with HBV, it is imperative that you determine if you have an acute or chronic infection. If you have an acute, or new infection, then it is important to know that very few people require any sort of treatment. Just be sure you are being monitored by your doctor, and take good care of your health and be sure to prevent transmission to others during this time. Chronically infected, now what? If your doctor determines you are chronically infected, then you will need additional information to determine what your next steps should be. Remember that unless you display urgent symptoms, such as jaundice, or a bloated abdomen, or severe illness, you really can wait a few weeks, or even a few months, to see a liver specialist. Many people panic if they are unable to see a liver specialist immediately.  Relax, find a good doctor, learn what you can about hepatitis B, and take care while you wait. How will you be evaluated? Your liver specialist will do a complete work-up on you. He will perform a physical examination, get a complete medical history, and he will run additional blood tests to learn more about your hepatitis B status and your liver health. He may also get a baseline ultrasound or perform other diagnostic imaging procedures to gain more data so he can make a decision whether or not you would benefit from treatment at this time.  Some of the blood work may need to be repeated over a period of time before your doctor decides whether or not to move forward with treatment. Do not beg your doctor for treatment. Waiting and watching is sometimes the

    http://www.hepb.org/blog/diagnosed-with-hepatitis-b-do-you-need-treatment-part-i/
  • National Hepatitis Testing Day. Why Should I Get Tested?

    Saturday, May 19th is the first National Hepatitis Testing Day.  Viral hepatitis partners will be working together with local health departments and other community partners in to bring viral hepatitis testing events to a neighborhood near you. Hep B United Philadelphia and the Hepatitis B Foundation and other partners will be holding screening events in downtown Philly. Why is hepatitis testing necessary? Hepatitis B is largely asymptomatic – until it is too late, or caught with blood donation screening, or lab work.  There are clearly defined risk factors for hepatitis B, or groups that are at greater risk, but there are also less clearly defined risks, or just bad luck. Think about this list and ask yourself if you might want to think about getting tested. If you are young, or when you were younger, was your behavior ever wild or impulsive? Are you a little older and you’re still a little impulsive, or occasionally wild? Did you ever get drunk, or do drugs – even once, or perhaps “lose a night”? Did you have unprotected sex, or do you have multiple partners? If you are monogamous, are you sure your SO is equally monogamous? Does a friend or family member possibly have a known or even an unknown infection? Maybe they know, but they aren’t telling you. Do you like traveling the world?  Outside of the U.S. there are some really wonderful places that have an extremely high HBV prevalence. Roughly 40% of Americans have tattoos, or various piercings. Did you check out the shop- not for the artistry, but for infection control practices before you got your tatt? Ever borrowed a razor or nail clippers or other personal hygiene tools from someone else? How about the nail salon? Do enjoy a good pedicure? Things happen. People are different, they have different lifestyle choices. People make mistakes. They change. Things happen. Sometimes I take calls from people that call HBF’s consult line. In the last couple of weeks I have spoken to a few consults that

    http://www.hepb.org/blog/national-hepatitis-testing-day-why-should-i-get-tested/
  • Joan Block Improving Lives Fund

    Honoring Joan Block – Co-Founder and Former Executive Director of HBFContinuing a Legacy of Improving the Lives of People Affected by Hepatitis B For 26 years, Joan Block has been leading the charge and keeping the beacon of hope shining for millions of people around the world who are touched by hepatitis B. In June 2017, Joan stepped down as the Executive Director of the Hepatitis B Foundation, and passing the torch to a new leader who will help guide the HBF into a new chapter of growth and development. But the purpose to which she has dedicated her life is not going away. Joan can’t be replaced, but we can honor her passionate commitment to the cause and simultaneously create the means to help the HBF continue to do what she did – directing resources where the opportunity is greatest or the need is most critical to improve the lives of those affected by hepatitis B. Donors who want to celebrate and perpetuate Joan’s legacy have set a bold goal of raising $150,000 to establish the Joan Block Improving Lives Fund of the Hepatitis B Foundation. The Fund will be a resource for: Leading advocacy efforts to increase attention and funding for hepatitis B; Ending discrimination against people with hepatitis B; Changing policies and practices to increase screening, prevention and linkage to care for hepatitis B; and Improving the lives of people affected by hepatitis B. Please consider honoring Joan's leadership and advocacy with a gift to the Joan Block Improving Lives Fund. Click here to read the detailed Case Statement about the Joan Block Improving Lives Fund.

    https://www.hepb.org/donate/joan-block-improving-lives-fund/
  • Targets to Eliminate Hepatitis B in U.S.

    U.S. National Academies of Sciences Report Concludes Hepatitis B Mortality Can Be Cut 50% Doylestown, PA (March 28, 2017) – The Hepatitis B Foundation commends the U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) report, A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report, that concludes a 50 percent reduction in mortality from chronic hepatitis B infection, as well as elimination of mother-to-child transmission of hepatitis B, is possible in the United States by 2030 with appropriate prioritization and resources. As a result of reducing hepatitis B, there would be a decrease of hepatocellular carcinoma (HCC or primary liver cancer) by about one-third since hepatitis B is a leading cause of HCC, a decrease of hepatitis B-related cirrhosis by about 45 percent, and the prevention of more than 60,000 deaths nationwide over the next decade. Hepatitis B is a deadly liver infection caused by the hepatitis B virus (HBV). In the U.S., it is estimated that over 2 million Americans are living with chronic HBV infection, only 25 percent are aware of their infection, and less than 10 percent of infected individuals are able to access care and treatment. The NASEM committee set targets for HBV elimination, reporting that meeting the stated goals would require diagnosing 90 percent of cases, linking 90 percent of cases to care, and treating 80 percent of cases. The NASEM report is the U.S. response to the World Health Organization’s call for countries to eliminate viral hepatitis as a major public health problem by 2030, and it recommends specific actions towards the elimination of hepatitis B and C within five key areas: information, interventions, service delivery, financing and research. “The report confirms significant improvements are needed to increase life-saving screening and access to care and treatment of hepatitis B,” said Joan Block RN, BSN, co-founder and executive director of the Hepatitis B Foundation. “The U.S. targets are bold and possible, but it will require the political will and investment in resources to achieve these ambitious goals.” “We agree that a critical investment in hepatitis B research is needed, with priority given to finding a cure,” responded Chari Cohen, DrPH, MPH, director of public health at the Hepatitis B Foundation. “Together with an already effective vaccine, a cure for hepatitis B would truly make hepatitis B history.” Investing in hepatitis B cure research is a key research area highlighted in the report, along with creating a standard national public health surveillance system; improving capacity for providers to screen, manage and treat patients; and identifying effective strategies for improving risk-based screening and linkage to care rates in hard to reach populations. Read the complete report, A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report, prepared by the National Academies of Sciences, Engineering, and Medicine on its website at www.nationalacademies.org/HepatitisElimination. About the Hepatitis B Foundation - The Hepatitis B Foundation is 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. 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. ###  

    https://www.hepb.org/news-and-events/news-2/hepatitis-b-foundation-commends-targets-to-eliminate-hepatitis-b-in-u-s-by-2030/
  • Princeton Workshop

    Princeton Workshop 2002 included the following attendees: Harvey Alter, Timothy Block, Baruch Blumberg, Deb Birnkrant, Carol Brosgart, Nat Brown, Antonio Bertoletti, Alessia Ciancio, Paul Cote, Mark Feitelson, John Gerin, Jay Hoofnagle, Leslye Johnson, Brent Korba, Thomas London, William Mason, Brian McMahon, Anand Mehta, Charles Rogler, C. Satishchandran, Raymond Schinazi, Robert Schneider, Marvin Siegel, David Standring, Lorne Tyrrell, Robert Whalen, and Shelly Xiong. In 1995, the Hepatitis B Foundation initiated a novel concept – to host a meeting that would bring together in one room a small group of the world’s thought leaders from academe, industry and government for highly focused roundtable discussions of new and innovative therapeutic strategies for chronic hepatitis B. Today, the prestigious Princeton Workshop serves an important role in promoting international scientific exchange and collaborations dedicated to the problem of hepatitis B. Despite the crowded scientific conference schedule, the Princeton Workshop continues to draw leaders in the field because of its small size and unique format. “Some of the most influential leaders in the field are invited to our workshop, which has minimal structure, allowing for a vigorous exchange of ideas,” said Dr. Timothy Block, HBF co-founder and president. “It’s unique from all other scientific meetings because it encourages interactive discussion at a level that is unprecedented, and fosters new relationships and research collaborations that would not occur otherwise.” And new research directions, Block added. For example, the list of HBV Research Priorities identified at the 2000 Princeton Workshop were part of the National Institutes of Health first 10-Year Liver Disease Action Plan, published in 2004. And the 2017 workshop focused the findings of the comprehensive Roadmap for a Cure: Priority Areas for Chronic Hepatitis B and Liver Cancer Research. “What makes the meeting special is that it always combines basic scientists and academics with those in the pharmaceutical industry who actually make the drugs,” said W. Thomas London, M.D., senior scientist at the Fox Chase Cancer Center in Philadelphia, PA. Because there are no formal workshop proceedings published, pharmaceutical executives can freely discuss – up to a point – what they are working on. Today, the Princeton Workshop is held annually, and alternates between two day sessions in Princeton, NJ and a special symposium in Hawaii, in conjunction with the larger HepDART meeting. The Princeton Workshop is free and by invitation only. Princeton Workshop Summaries 2022 Workshop 2017 Workshop 2015 Workshop 2013 Workshop 2011 Workshop 2008 Workshop 2006 Workshop 2004 Workshop 2003 Workshop 2002 Workshop 2001 Workshop 2000 Workshop

    https://www.hepb.org/news-and-events/princeton-workshop/