Hep B Blog

Category Archives: Hepatitis Awareness Month

#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 talking to. Stigma and discrimination can cause mental health problems and prevent millions of people living with hepatitis from finding their voice, feeling comfortable sharing their story, and being diagnosed. Without solving this multi-faceted problem, the goal of eliminating viral hepatitis by 2030 is just an empty platitude. 

Having the privilege and platform to speak about hepatitis and mental health during this summit was very important to me. My struggles with hepatitis B and my mental health struggles are interconnected in so many ways. That is also true for so many other patients who have struggled with poor mental health. Long before I started my patient advocacy journey, I felt voiceless. Long before I ever talked publicly about my mental health struggles, I felt voiceless.  

Empathy is a crucial piece of the puzzle for how we give those who feel voiceless the greatest opportunity to find their voice, regardless of where they are from or the stigmas that surround them. We must be empathetic when creating policies, action plans, and declarations. So many millions of people are left undiagnosed, untreated, and voiceless because of fear of the societal, associative, and personal stigma that they will go through if they seek out a diagnosis or talk about their status openly. There is still so much misinformation surrounding hepatitis and the only feasible way to fight this is by amplifying the voices of those who speak the truth about hepatitis with empathy, cultural sensitivity and appropriate.  

The symptoms of poor mental health exacerbate this feeling of voicelessness. After five years of advocacy, over a decade of therapy, and five years of being on a consistent treatment for my hepatitis B, I still struggle with clinical depression and anxiety. I will live every day with depression and anxiety in varying degrees for the foreseeable future. My mental health started to trend downward late last year. I had to find the strength to start an antidepressant medication and give it an honest try. I can happily say, that today and every day after will mark the longest I’ve been on an antidepressant (almost six months now), and I can report that it is helping me manage my mental health and to continue managing my hepatitis.  

I say all of this to highlight the connection between times in my life where I have actively been taking steps to manage my mental health and my hepatitis B. These periods overlap with each other, and they have one important thing in common. Empathy for myself and others. This is one of the strongest coping tools I have to manage my hepatitis B and my mental health. Patient health outcomes are linked to the state of their mental health and the tools and resources they are given to help manage it.  

After attending this World Hepatitis Summit, I feel a calling to act with more urgency. This isn’t an easy task. For me, it’s one of the most challenging aspects of advocacy. I have such a natural tendency to self-talk in very judgmental and negative terms. I sometimes think I’m a terrible person for not doing more and taking more time to learn how to become a more capable and productive advocate. I ask myself why I’m not having more conversations, learning about others’ perspectives, and potentially teaching someone or setting them on a path of changing their minds about hepatitis and mental health.

The desire to grow more as an advocate and connect more with others is within me, but the key to taking more action is to meet myself where I am currently and to practice self-empathy. When I speak to myself with empathy, kindness, and encouragement, I am much more likely to grow and make a positive change, even though mental health struggles.   

Most people in the world can relate to or know someone who has struggled with their mental health. This commonality between people can be a powerful tool if wielded with empathy instead of fearmongering and focusing on the most rare, violent, and negative aspects of mental health struggles. These stories fill the public, media, social media, and political discourse and create more layers of stigma (public, associative, self, provider). Changing this narrative will be a monumental undertaking but to use one of my favorite quotes, “The best time to start was yesterday. The next best time is today.” 

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

Partner Highlight: Philadelphia Department of Public Health’s Viral Hepatitis Program Makes Great Strides Towards Elimination!

 

 

 

 

 

 

 

Happy Hepatitis Awareness Month! Continue reading to get to know the Viral Hepatitis Program at the Philadelphia Department of Public Health (PDPH)!  

The Viral Hepatitis Program at PDPH strives to support Philadelphia residents and service providers in several ways, including preventing viral hepatitis infection through education, screening, and vaccination; improving and providing access to affordable treatment; and supporting provider efforts to provide comprehensive viral hepatitis care/treatment. There are many tools that exist to prevent and treat viral hepatitis infections, and even cure them in the case of hepatitis C. Access to these services, however, is not readily available for everyone. The Viral Hepatitis Program aims to increase access and reduce inequities in care through collaborations and programming, in hopes of achieving the 2030 goal of hepatitis B and hepatitis C elimination.  

The Viral Hepatitis Program performs a number of exciting projects to achieve this work! 

 

 

 

Patient Engagement 

Many members of the Viral Hepatitis Program spend their days interacting with patients over the phone. Public health surveillance allows the program to work with hepatitis B and hepatitis C patients to provide individualized support. This outreach provides patients with viral hepatitis education, linkage-to-care, and care navigation along with access to harm reduction materials, support for substance use disorder care, and additional resources. 

 

 

 

 

 

Above: Viral Hepatitis team member, Cassandra Lamadieu, provides viral hepatitis educational materials to community members in attendance at the 2023 Philadelphia Block Captain Rally. 

 

Philly InSync: Provider Engagement  

Through collaborations within PDPH and with a partner organization, the Philly InSync Project provides education and technical assistance to healthcare providers and facilities to integrate harm reduction, substance use disorder care, and care for infectious diseases related to drug use. Philly InSync works with multiple sites to provide testing, care, and treatment of hepatitis B, hepatitis C and other infectious disease care while also providing technical assistance including staff trainings, data improvement strategies, and reducing barriers to care. A technical advisory committee of Philadelphia providers meets quarterly to provide enhanced technical assistance to these sites while learning how to improve the care they provide as well. The program elevates conversations among Philadelphia providers and creates a collaborative community to learn, listen, and share experiences, challenges, and solutions that involve anything from clinical experiences to insurance barriers.   

Pharmacy Project: Increasing Hepatitis A & B Vaccination 

Another project to increase viral hepatitis prevention efforts is the Pharmacy Project, which is focused on improving pharmacy-based vaccination for hepatitis A & B. Annually, the Viral Hepatitis Program conducts a survey of pharmacies in Philadelphia to collect information about hepatitis A and B vaccination services. The survey results are shared with the community on a map that allows patients and providers to find vaccinating pharmacies. The data collected is also used to identify barriers to vaccine access, to inform additional activities to support patients, providers, and pharmacists. 

 

 

 

 

 

 

 

 

Social Media 

To engage the community and to promote collaboration, the program runs several social media accounts and provides up-to-date information and resources. To access information on vaccine events, mobile health clinics, and many other health services follow along at the links below! Make sure to follow along during the month of May for some special Hepatitis Awareness Month content!  

 

 

 

 

 

 

 

Philadelphia Hepatitis B & Hepatitis C Elimination Plan 

The Viral Hepatitis Program and local partners and community members have worked together to create a plan for the elimination of hepatitis B and hepatitis C in Philadelphia. To see information on this process visit: Philadelphia Hepatitis B & Hepatitis C Elimination Plan Community Engagement Executive Summary. Striving to eliminate the impact of these infections from Philadelphia is not a new effort, as a committed community of viral hepatitis eliminators has been hard at work for quite some time. Hep B United – Philadelphia and The Hepatitis C Allies of Philadelphia (HepCAP) are the two local coalitions made up of individuals and organizations committed to viral hepatitis elimination. While much has been accomplished, PDPH and the local community of eliminators are continuing the work to provide services to educate, prevent, vaccinate, test, link-to-care, and treat these two diseases in Philadelphia. The Plan will be released in 2023. 

 

To learn more about viral hepatitis or for any questions… 

Websites: Phillyhepatitis.org & Hepcap.org 

Email: hep-ddc@phila.gov 

To order educational materials: bit.ly/hepeducationalmaterials  

May Hepatitis Awareness Month #justBLoud

Hepatitis Awareness Month #JustBLoud blog

This May, for Hepatitis Awareness Month, we are asking you to #justBLoud for hepatitis B. Currently up to 2.4 million living in the U.S. have chronic hepatitis B, yet no one seems to be talking about it. The average American is unaware about hepatitis B and why our country needs to put more energy into prevention and finding a cure. The louder we are, the more we can help people get screened, vaccinated or treated for this serious disease.

You can start getting loud the Hepatitis Awareness Month by making a short video explaining why it’s important for you to #justBLoud about hepatitis B. It can be a personal story or you can take the text right from the below bulleted points.  Be sure make the post public and tag #justBLoud and tag HepBFoundation. You can even make quick Instagram and Facebook stories using the #justBLoud stickers we created, just search “justbloud” in the stickers menu. If you’re camera shy, write down your reason for being loud and share a photo of it online.

Talking points for your message may include:

  • #JustBLoud about prevention: Hepatitis B is easily prevented with a safe vaccine.
  • #JustBLoud about transmission: Hepatitis B is transmitted through direct contact with infected blood, not casual contact. Hug someone with hepatitis B today.
  • #JustBLoud about screening: In the U.S. only 25% of people with hepatitis B are aware that they have hepatitis B. Get screened today.
  • #JustBLoud about treatment: Only 50% of people with diagnosed chronic hepatitis B in the U.S. receive appropriate medical care.
  • #JustBLoud about giving: Donating to the Hepatitis B Foundation makes a big impact for people living with hepatitis B. It affects advocacy efforts as well as research to find a cure!

Other easy ways to just B Loud this Hepatitis Awareness Month:

  • Share our social media posts this month to help spread the word. Make sure to follow us on Facebook, Instagram, Twitter, LinkedIn, and YouTube.
  • Use one of these as your zoom background to get the conversation started: justBLoud zoom background justBLoud zoom background with microphone
  • Join our Action Center for Hep B United here.

Whatever you do this month, don’t be quiet! We need to spread the word about hepatitis B to help people living with hepatitis B whether they know it or not and those who are unvaccinated. Thank you in advance for participating.


Please note: If you don’t want to participate because you fear discrimination please contact us privately here.

Happy Hepatitis Testing Day

May 19th is national Hepatitis Testing Day! Today we raise awareness about viral hepatitis and encourage people to know their status. More than half of the people living with viral hepatitis in the U.S. do not know their status, so if you do not know your status, get tested!

Since 2013, the United States has officially observed May 19th as Hepatitis Testing Day. With over 2.4 million people living with chronic hepatitis B in the United States and 300 million people living with it globally, it is so important to know your status! Additionally, hepatitis B is known as a “silent infection” which means that you do not know you have the disease until it has done major damage to your liver. Luckily, with hepatitis B testing, you can find out your status and take control of your health!

Hepatitis B Testing

The hepatitis B test is a simple blood test that can be done at your doctor’s office or local care clinic. The hepatitis B blood test requires only one sample of blood and your health care provider should order the “Hepatitis B Panel,” which includes three parts. You and your health care provider will need to know all three test results in order to fully understand whether you are infected, protected or still at risk for a hepatitis B infection. Remember to ask for a copy of your hepatitis B blood test results so that you fully understand which tests are positive or negative.

Interpreting Results

Your results should include HBsAg (hepatitis B surface antigen), HBsAb (hepatitis B surface antibody), and HBcAb (hepatitis B core antibody). Below is a chart to help you interpret your results!

Newly Diagnosed

Here are some next steps if you have received your test results and tested positive for hepatitis B. The first thing you should know is that you can live a long and healthy life.

Next Steps:

  1. Understand your diagnosis. Do you have an acute or chronic infection? When someone is first infected with hepatitis B, it is considered an acute infection. Most healthy adults who are acutely infected are able to get rid of the virus on their own. If you continue to test positive for hepatitis B after 6 months, it is considered a chronic infection. Knowing whether your hepatitis B is acute or chronic will help you and your doctor determine your next steps. If you are unsure of what your blood test results mean, you may find Understanding Your Blood Tests helpful.
  2. Prevent the Spread to Others. Hepatitis B can be transmitted to others through blood and bodily fluids, but there is a safe and effective vaccine that can protect your loved ones from hepatitis B. You should also be aware of how to protect your loved ones to avoid passing the infection to family and household members and sexual partners.
  3. Find a Physician. If you have been diagnosed with chronic hepatitis B, it is important to find a doctor that has expertise in treating liver disease. We maintain a searchable physician directory database to help you find a liver specialist near you.
  4. Educate Yourself. Get the facts about hepatitis B, including what it is, who gets it, and possible symptoms, starting with What is Hepatitis B.
  5. Seek Support. It might be helpful to you if you seek community support. You can join Hep B Community, an online global forum dedicated to supporting people affected by hepatitis B. The Hepatitis B Foundation also lists more support groups you can check out here .

 

Author: Evangeline Wang

Contact Information: info@hepb.org

Hepatitis B Discrimination Registry

 

Despite almost 300 million people living globally with the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness.

The Hepatitis B Foundation has been a longtime advocate of people living with hepatitis B. In fact, our advocacy successfully made hepatitis B a protected condition under the Americans with Disabilities Act (ADA) in the United States. We also support programs to fight discrimination faced by people living with hepatitis B when applying to schools, jobs, or accessing affordable medicine.

We also compiled a report called “Health Insurance Costs Impacting Shoppers Living with Hepatitis B (2020) to help people living with hepatitis B in the U.S. make informed decisions when choosing a health insurance plan. It can also be shared with policymakers to inform them of potentially discriminatory benefit plan designs in various states.

Most recently, Hepatitis B Foundation is excited to announce the launch of our discrimination registry! The purpose of this registry is to document and track discrimination related to hepatitis B.  Hepatitis B discrimination is described as unjust, unfair, or prejudicial treatment of persons on the basis of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. For someone with hepatitis B, this can mean exclusion, denying benefits, denied employment, education, training, goods or services, or having significant burdens imposed on an individual due to their infection status.

How to Share Your Experience

Use the registry link here and fill out the questions accordingly.

  1.  In the first section, we ask about your demographics which you can always select prefer not to answer for any of the questions.
  2. In the second section, we ask about your hepatitis B discrimination experience. In the third section, we offer additional support.
  3.  If you are located in the United States and are experiencing discrimination due to your hepatitis B status we can assist you to file a claim with the Department of Justice.

Other Discrimination Resources

Check out our Know Your Rights page. This page will help guide you through steps if you are experiencing discrimination in various institutional settings.

We have sections for:

  1. U.S. Schools and Education
  2. U.S. Employment
  3. U.S. Military
  4. U.S. Access to Medication
  5. Immigrant and International Issues

If you have any questions or concerns please email discrimination@hepb.org

Author: Evangeline Wang

Contact Information: info@hepb.org

May is Hepatitis Awareness Month!

May is Hepatitis Awareness Month! This month, we bring awareness to the public health impact of viral hepatitis in the U.S., and the health consequences of hepatitis B and C infections if left untreated.

Globally, hepatitis B virus (HBV) affects 2 billion people and in the U.S. an estimated 2.4 million people are living with a chronic hepatitis B infection. Hepatitis B is often called the “silent killer”, as people often do not realize they are infected with hepatitis B until their liver is severely damaged, which makes it vital that the month of May is dedicated to raising awareness of hepatitis B. Because chronic hepatitis B infection is the most common risk factor for liver cancer, it is critical that we improve awareness on how to prevent, diagnose and treat hepatitis B. Individuals chronically infected with hepatitis B have a 25% to 40% lifetime risk of developing liver cancer. However, it is important to note that with proper testing and treatment, people living with hepatitis B can reduce that risk and live a long and happy life.

This month we look forward to encouraging all adults in the U.S. to get tested for hepatitis B with a simple blood test, and get vaccinated with a safe and effective vaccine if they are not yet protected or infected.  Thank you for helping us bring awareness to hepatitis B this May!

Resources For Patients

The Hepatitis B Foundation has multiple resources for patients you might not be aware of. Below is a small list you should check out!

  • Hep B Community
    • A new global online support group.
  • Physician Directory
    • Find knowledgeable doctors! The Hepatitis B Foundation has created a directory of liver specialists to help those seeking qualified medical care. The specialists have agreed to be included in this directory and treat chronic hepatitis B and/or liver cancer and are willing to be contacted for further information.
  • B Heppy
    • A podcast discussing all things hepatitis B-related. Our first episode discusses the COVID-19 vaccine and people living with hepatitis B.
  • Liver Q’s Video Series on Hepatitis B
    • These short video clips answer some frequently asked questions about hepatitis B.
  • Clinical Trial Locator
    • Volunteering for a clinical trial program can be very valuable. Expensive blood work, treatment medications, and doctor’s visits are usually provided free of charge for those accepted into a study. Clinical trials also provide the opportunity to potentially benefit from the latest advances in medical science.

Check out our website for more!

Resources For Providers

  • CDC’s Hepatitis Awareness Month Social Media Toolkit
  • Hep B United’s and CDC’s Know Hepatitis B Social Media Templates
    • The Know Hepatitis B campaign provides translations in multiple languages like Arabic, Amharic, French, and Swahili, Chinese, and Vietnamese.
  • Hep B United Philadelphia’s Provider ECHO
    • 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.
  • Webinar: Educational Resources for African Communities
    • Panelists from the Centers for Disease Control and Prevention (CDC) and the African Services Committee will discuss Know Hepatitis B campaign resources for community health workers working within African communities and community-based hepatitis B prevention initiatives. Additionally, hepatitis B activist and storyteller Bright Ansah will share his personal experiences with hepatitis B and highlight the need for greater awareness, education, and resources about hepatitis B in African communities.

Join Hepatitis Partners for a Twitter Chat on May 19th, #HepTestingDay!

Join HepBUnited, NASTAD, National Viral Hepatitis Roundtable (NVHR) and CDC’s Division of Viral Hepatitis for a Twitter Chat on Hepatitis Testing Day, May 19th at 2 P.M. EDT.  The chat will highlight hepatitis events and allow partner organizations to share their successes, challenges and lessons learned from their efforts, particularly during this unique time. Partners will also highlight innovative strategies for outreach during COVID-19. This twitter chat serves to keep us all informed, raise awareness and share messaging. All are encouraged to join the twitter chat conversation with the hashtag #HepChat20, and to keep partners posted throughout the month about events and messaging with the hashtag #HepAware2020.

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