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  • #justB Storyteller David’s Advocacy Journey

                        David is living with hepatitis B, and he spoke about empathy and mental health as a panelist at the World Hepatitis Summit (WHS) 2024 Another World Hepatitis Summit (WHS) has come and gone, this time in Lisbon, Portugal. I previously attended the 2022 summit in Geneva and spoke during the Youth Can't-Wait and Closing Sessions. I would like to give my thanks to the wonderful people at the World Hepatitis Alliance, for allowing me to travel and speak at this year's summit as well.   I spoke during a newly created session called Hepatitis and Mental Health. During this session, a video I made in collaboration with the WHA last year, was played before I spoke. It is part of the WHA "I can't wait" series of videos, which showcase patient advocates and their journeys with patient advocacy and why they can't wait for a world without hepatitis. I, the dedicated and powerful Shabana Begum of the UK, and the courageous and vocal Shaibu Issa of Tanzania are the first to be featured in these videos.   I can't wait... these words evoke dire urgency. During this summit, I felt and heard the urgency from many of the speakers, advocates, and attendees. From the opening session, it was emphasized that the world DOES have the tools and resources but DOES NOT have the required amount of political and social will to eliminate viral hepatitis by 2030. The need for person-centered and culturally appropriate approaches as being critically important was also highlighted.   These declarations capture the moment the viral hepatitis community is currently in. Time is slipping away by the day and the people who suffer from viral hepatitis, hepatitis B and D included, cannot continue to wait in silence as they have been. Deaths from hepatitis B are still alarmingly high each year. These statistics highlight a problem of stigma and discrimination that presents differently depending on where you are located or who you are

    http://www.hepb.org/blog/justb-storyteller-davids-advocacy-journey/
  • Should I Take Milk Thistle?

          Silymarin or “milk thistle”, an herb and extract of milk thistle seeds, is a supplement commonly taken by people living with hepatitis across the world, yet its proven benefits remain controversial. It is not a treatment for hepatitis B or D, nor has it been shown to have any effect against fighting these viruses. This herb is believed to have possible benefits on liver health due to its antioxidant and free radical fighting properties, although no studies have found a consistent positive effect on viral load or fibrosis scores. U.S. National Institutes of Health (NIH) has published a directory of what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Results from clinical trials of milk thistle for liver diseases have been conflicting or haven’t been clinically meaningful. Some of the studies have been of poor quality, too.” The overall finding is that scientific research has not found any benefit of taking milk thistle. Silymarin is often taken by patients or suggested by their health care provider during or after interferon treatment ends, presumably with the hope of a protective or anti-inflammatory effect on the liver. But a 2013 study on hepatitis C patients unsuccessfully treated with interferon (the standard treatment for hepatitis B and D coinfection) found no significant difference in silymarin’s ability to lower ALT scores over placebo (a pill with no active drug ingredients)1. Another 2013 metanalysis reviewed 8 studies which tested silymarin against a placebo and looked for measurable levels of improvement in ALT scores, of which the results were mixed and inconsistent1. However, studies have found improvements in patients’ self-reported quality of life after taking silymarin 2 – perhaps due to decreased stress or self-perceived control over their

    http://www.hepb.org/blog/milk-thistle/
  • Hepatitis B Blood Tests

    The “Hepatitis B Panel” of Blood Tests Only one sample of blood is needed for a hepatitis B blood test, but the “Hepatitis B Panel” includes three parts. All three test results are needed to fully understand whether a person is infected or not. Below is an explanation of the 3-part “Hepatitis B Panel” of blood test results. HBsAg (Hepatitis B surface antigen) - A "positive" or "reactive" HBsAg test result means that the person is infected with hepatitis B. This test can detect the actual presence of the hepatitis B virus (called the “surface antigen”) in your blood. If a person tests “positive,” then further testing is needed to determine if this is a new “acute” infection or a “chronic” hepatitis B infection. A positive HBsAg test result means that you are infected and can spread the hepatitis B virus to others through your blood. anti-HBs or HBsAb (Hepatitis B surface antibody) - A "positive" or "reactive" anti-HBs (or HBsAb) test result indicates that a person is protected against the hepatitis B virus. This protection can be the result of receiving the hepatitis B vaccine or successfully recovering from a past hepatitis B infection. This test is not routinely included in blood bank screenings. A positive anti-HBs (or HBsAb) test result means you are “immune” and protected against the hepatitis B virus and cannot be infected. You are not infected and cannot spread hepatitis B to others. anti-HBc or HBcAb (Hepatitis B core antibody) - A "positive" or "reactive" anti-HBc (or HBcAb) test result indicates a past or current hepatitis B infection. The core antibody does not provide any protection against the hepatitis B virus (unlike the surface antibody described above). This test can only be fully understood by knowing the results of the first two tests (HBsAg and anti-HBs). A positive anti-HBc (or HBcAb) test result requires talking to your health care provider for a complete explanation of your hepatitis B status.

    https://www.hepb.org/prevention-and-diagnosis/diagnosis/hbv-blood-tests/
  • July 4th: Celebrating Freedom from Discrimination Against Hepatitis B

    Image courtesy of stockimages at FreeDigitalPhotos.net The day my daughter started kindergarten, her teacher asked that she be transferred to another classroom. She thought my daughter posed a health threat to a classmate who was recovering from leukemia. Our doctor had disclosed my daughter’s chronic hepatitis B infection on her school health form. I thought the school nurse would know my daughter posed no risk to students, who were nearly all immunized against hepatitis B and supervised by teachers trained in universal precautions. I was wrong on many counts. The school nurse went along with the teacher’s recommendation. After heated discussions with the school principal that included providing copies of medical reports and civil rights laws, my daughter remained in the classroom and the school’s staff received training on universal precautions. That happened 16 years ago. The Americans with Disabilities Act (ADA) had been enacted 10 years earlier and policy makers, health officials and the courts were still working out exactly how the landmark law would protect people with blood-borne infections such as HIV and hepatitis B and C. Even though the ADA was a work in progress at the time, it still played a critical role in protecting my daughter’s right to an education without any restrictions, and that’s what I celebrate every July 4. U.S. schools have historically been center stage for some of our worse acts of discrimination, beginning with racial segregation. But just as courts dismantled racial discrimination in schools, so, too, has it cleared the way for equal access to education for students with blood-borne infections. In 1985, Indiana school officials refused to allow HIV-infected Ryan White to return to school because they feared he posed a health threat to other students. It took a team of lawyers and medical experts armed with research to show he posed no risk to fellow students. Nearly 30 years later, some medical, nursing and dentistry

    http://www.hepb.org/blog/july-4th-celebrating-freedom-from-discrimination-against-hepatitis-b/
  • Dating and Hepatitis B - A Personal Perspective

    Great insights and advice on dating with chronic HBV from a member of the Hepatitis B Information and Support List.      Dating is a recurring topic on the Hepatitis B Information and Support List, and for good reason.  Many think having a chronic (infectious) illness like hepatitis B makes them less than worthy of love and a normal life with a romantic partner.  Unfortunately we forget we are more than our illness and focus on the things we cannot change rather than the wonderful things we have to offer a partner. I have been on several dating sites since my divorce a few years ago, so I have some experience with this. My personal philosophy and method is to be selective about the people I choose to date.  To me, it is important if the potential date has common sense and good character. Once I feel this person is worthy of my time and attention, I have the talk about my hepatitis B, and that HBV is vaccine preventable.  If they are interested in continuing a romantic relationship with me, they need to be vaccinated to protect against HBV.  Some may have already been vaccinated, and if so, HBV is no longer an issue. You need to approach dating, not as who will ‘accept’ you, but rather who ‘deserves' you. Perspective is everything. If you see a health issue like HBV as a unique barrier to intimacy others will not understand and might reject you for, you will create self-defeating thoughts that not only limit your happiness, but are inaccurate. Everyone has issues. Whether it is health, mental, social or financial, we all feel alone at times and want a connection with another soul. Dating with HBV can be compared to interviewing for a job. In a job interview you would present your best traits to a potential employer.  While you want to be honest about your shortcomings, you don’t tell them why they would NOT want to hire you.  That would be stupid. Right?  Yet it is often how we approach dating, thinking no one will accept us,

    http://www.hepb.org/blog/dating-and-hepatitis-b-a-personal-perspective/
  • Externally Led Patient-Focused Drug Development Meeting

    The primary goal of this virtual (online) meeting, which was held on June 9, 2020, was to hear directly from patients about their perspectives on living with chronic hepatitis B and their experiences with treatments to improve the development of new drugs in the research pipeline. The patient perspective is critical in helping the U.S. Food and Drug Administration (FDA) understand the context in which regulatory decisions are made for new drugs. This input will inform FDA’s decisions and oversight both during drug development and during its review of new treatments. The meeting format was very interactive with more than 650 attendees and 300-plus comments submitted. The discussion covered current and future hepatitis B treatments. We heard directly from patients, in their own voices, about their perspectives on living with the disease and hopes for clinical trials and treatments. There was a live Q&A with the audience, as you can see in the official recording. You can view it by clicking on the arrow in the image below. [embed width="480" height="270" class="leftAlone" thumbnail="https://i.ytimg.com/vi/mHQhvbyNH3M/hqdefault.jpg?r"]http://www.youtube.com/watch?v=mHQhvbyNH3M[/embed] Download the full report here. Download the full meeting transcript here. Download all submitted e-mail comments here. The FDA has reviewed and posted the report on its External Resources and Information Related to Patients’ Experience page. 10/24/20

    https://www.hepb.org/news-and-events/patient-focused-drug-development-meeting-virtual/
  • Our Voices Made a Difference: CVS Caremark to Cover Vemlidy Prescriptions

    The Hepatitis B Foundation, along with our network of patients, providers and partners, has successfully advocated for improved access to the hepatitis B medication Vemlidy in the US. Recently, the Hepatitis B Foundation learned that CVS Caremark, one of the nation's leading pharmacy benefit management companies, providing comprehensive prescription benefit management services to over 2,000 health plans, stopped providing coverage for Vemlidy as of July 1, 2019. This decision impacted thousands of Americans who rely on this life-saving drug to manage their hepatitis B. HBF worked with our Scientific and Medical Advisory Board, our coalition partners, providers and patients across the United States to put pressure on CVS Caremark to reverse their decision, and return Vemlidy to their list of covered prescriptions. We organized a grassroots advocacy effort, sending over 20 letters from partner organizations, and 250 individuals signed a petition encouraging CVS Caremark to provide coverage for this essential medication. As a result, CVS Caremark announced this week that they will resume coverage of Vemlidy for their plan members as early as October 2019! Thank you to everyone who helped us to advocate for this important change. HBF firmly believes that all FDA-approved medications should be available for doctors to prescribe to their patients, and this change will ensure that those on CVS Caremark plans have access to this life-saving drug.  Thank you to everyone who signed the petition, wrote a letter, or simply shared the information. Because of you, those who rely on Vemlidy now have one less barrier to accessing their needed treatment!

    https://www.hepb.org/news-and-events/news-2/our-voices-made-a-difference-cvs-caremark-to-cover-vemlidy-prescriptions/
  • Wendy's Story

    Growing up in Canada, Wendy lived a typical upbringing, considered herself to be athletic, and was involved in many sports. When Wendy was in college, she found out she had hepatitis B and learned she got it from her mother at birth. Years later, when her mom was diagnosed with liver cancer, it was a wake-up call for Wendy – she realized the importance of educating herself about hepatitis B and committed to living a healthier lifestyle, getting regular checkups, and having her doctor actively monitor her hepatitis B.   

    https://www.hepb.org/research-and-programs/patient-story-telling-project/wendys-story/
  • Online Training

    Learn more about hepatitis B with online trainings and podcasts. Each training below is a recorded presentation given by experts in the field of hepatitis B. These presentations are for information purposes only and are not intended as medical advice. The views of the speakers are not necessarily those of the Hepatitis B Foundation.   Hep B United Philadelphia's and National Nurse-Led Care Consortium's Hepatitis B ECHO The ECHO Model™ is a nationally recognized physician education model using proven adult learning techniques and interactive video technology. The model connects groups of community providers with specialists in regular real-time collaborative sessions. The sessions are designed around case-based learning and mentorship to help health care practitioners gain the expertise required to provide culturally competent and quality services for patients. The goal of the Hepatitis B ECHO is to expand provider capacity at the primary care level to diagnose, treat and manage hepatitis B. Each ECHO session will include one case discussion and a 15-minute didactic aimed to empower providers to manage hepatitis B. Each session will begin at 12 p.m. EST on the fourth Thursday of every month starting on Thursday, January 28, 2021.  Register Here! ECHO Presentations ECHO Sessions         Hepatitis B Screening & Care for Asian and African Communities  This CME training from PRIME Education features two experts with deep experience in providing hepatitis B virus (HBV) care to high-risk patient populations, with a focus on serving people from Asian and African countries. The high burden of HBV and liver cancer in underserved populations highlights the need for targeted outreach, screening, and linkage to care. Watch this video to learn new strategies for delivering appropriate care, improving HBV workflows, and cultivating patient engagement for better outcomes. Offering 1 credit hour for multiple providers. This CME course is part of a Hepatitis B Toolkit providing resources on a number of topics, including how to tailor hepatitis B education for high-risk populations and how to overcome disparities and improving linkage to care for HBV patients. Each toolkit component offers 1 credit hour. Click here for online CME training from Prime Education Click here for the Hepatitis B Toolkit

    https://www.hepb.org/resources-and-support/online-training/
  • Does Your Sex Life Interfere With Organ Donation? A Hepatitis B Perspective

    Giving or receiving the gift of life through organ donation is truly a gift. This week’s story - "CDC’s proposed guidelines for transplants say two sex partners is too many for top-notch organ donors " may well jeopardize the availability of this precious gift to those in need. For those living with HBV, this dilemma is especially disheartening.  With organ donation highly unlikely due to their HBV status, those living with HBV also face the possibility of requiring a liver transplant due to end-stage liver disease or HCC. Organs for donation don’t come easily.  These proposed guidelines are limiting.  The question is, are these guidelines even realistic?  Dr. Harry Dorn-Arias, a transplant surgeon at the Univeristy of Virginia told MSNBC, said it best: “With the new guidelines, every college student in America will be high-risk”. Perfectly healthy, young candidates may choose to waive their decision to donate their organs because the guidelines seem so… judgmental. They might not even consider the act of donation. And who will be out there to ensure that the now smaller subset of potential donors isn’t lying, and who will update the information annually? Will the Department of Motor Vehicles (DMV) be quizzing you on your sexual activities when you choose one way or the other to check the organ donor box for your license? If you’re sixteen and standing there with your mom at the DMV, are you going to take a stand and not be an organ donor because you have multiple sex partners, and mom doesn’t even know you’re having sex?  (Just went through the whole DMV process, so it’s fresh in my mind).  What if you are completely monogamous, but your partner is not? Do you have high-risk organs due to association?  And what if you are considering a life-saving, living related donation for your wife, but you're afraid to tell her you've had multiple sexual partners for the last 10 years of the marriage? If you've been lying the last 10 years, why

    http://www.hepb.org/blog/does-your-sex-life-interfere-with-organ-donation-a-hepatitis-b-perspective/