Hep B Blog

Category Archives: 300 Million Reasons

#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.” 

 

Check out David’s storytelling journey here: https://www.hepbstories.org/justb/david?rq=david

 

Minority Health Awareness Month: Why does hepatitis B disproportionately affect some groups more than others? 

 

 

 

 

 

 

 

 

 

 

 

Hepatitis B is a global public health crisis. While it is heavily underreported across the world, experts estimate that there are approximately 300 million people living with chronic hepatitis B. Anyone can get hepatitis B. The hepatitis B virus does not discriminate. This is why it is crucial for everyone to get tested for hepatitis B at least once in their lifetime and get the hepatitis B vaccine. 

However, some people are at a greater risk for developing chronic hepatitis B than others. This is not necessarily because some people are genetically predisposed to the virus but because of poor awareness and lack of resources to prevent or treat hepatitis B.  It is important to understand that health is influenced by many different factors including genetics, our environment, availability of resources and access to care. To fully understand the reasons behind racial and ethnic disparities in hepatitis B prevalence across the globe, we must understand the social determinants of health associated with hepatitis B testing and care.  

Differences in HBV Genotypes 

Genotypes describe the characteristics of the virus. The hepatitis B virus (HBV) contains many different genotypes, which explains why the virus impacts people in different ways (i.e., how the virus spreads to others, likelihood of developing serious liver disease, etc.). Some genotypes such as genotype A can increase the chances of chronic (long-term) infection. 

Certain HBV genotypes are more common in some regions of the world than others, which may explain why some people are more likely to experience worse health outcomes than others (Sunbul, 2014). 

 Genotype A is commonly found in the African region. Genotypes B and C are found in the Asia Pacific regions. Genotype D is less likely to lead to a chronic infection but can still result in serious liver failure without proper intervention. Genotype D is found mostly in South Asia (Pakistan and India). Source: Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

Social Determinants of Health 

Public health researchers call the economic, cultural and political factors that shape society “social determinants of health,” which go beyond medical care and insurance coverage. Our health is influenced by our access to education, employment opportunities, local, state and national policies, and our neighborhood and environment. (Greene at al., 2017). 

In the global context of hepatitis B prevention and treatment, some groups are at a better advantage than others. Some countries are more technologically advanced with a strong economy. This makes access to testing, vaccine, clinical trials, and treatment options much easier for some populations (though disparities still exist). Political will and access to economic resources impact what public health issues should be prioritized for in many countries. If a country has a poorly maintained economy and access to resources is limited, it is less likely to develop or sustain critical public health programs to prevent or test for hepatitis B or provide proper care for those living with hepatitis B. In some regions, access to schools and education is restricted, which impacts health literacy and access to economic mobility. Poor awareness due to low health literacy and limited knowledge about hepatitis B is usually because of overall education deficiencies. This makes it difficult for people to understand health education if they lack basic literacy skills (i.e., if they cannot read or write). In other regions, health literacy is not prioritized. Some people have better access to tools and resources that help them understand how to navigate the health care system, get medical insurance and make better decisions about their health (e.g., starting treatment or routinely getting ultrasounds to monitor liver function) (Greene et al., 2017). 

In the U. S., hepatitis B is an important health concern for many Asian and African immigrant populations. This is partially due to low or poor vaccination rates in their country of origin (some countries do not have policies on mandatory vaccination, access to adult vaccination or sufficient access to birth dose). While people should be getting screened for hepatitis B during the immigration process, this does not always occur. Immigrant populations also tend to have lower rates of insurance coverage. Many either lack healthcare insurance or do not have adequate insurance.  

Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in other languages, such as Khmer or Mandarin. This makes them more likely to avoid getting care or using preventative services such as hepatitis B screening and vaccination due to fears of high out-of- pocket costs, disruptions in their immigration process and cultural factors. Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in their native languages. 

The Hepatitis B Foundation and the Hep B United Coalition work with local, national, and global partners to address barriers around hepatitis B and liver cancer for impacted communities. Local coalitions such as Hep B United Philadelphia work with community-based organizations like African Family Health Organization (AFAHO), Philadelphia Chinatown Development Corporation (PCDC), and SHAMS Health Clinic to increase uptake of screening and provide education on hepatitis B and liver cancer among Asian and African immigrant communities.  

 

References: 

Greene, K. M., Duffus, W. A., Xing, J., & King, H. (2017). Social Determinants of Health Associated with HBV Testing and Access to Care among Foreign-born Persons Residing in the United States: 2009 – 2012. Journal of health disparities research and practice, 10(2), 1–20. 

Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

Nurses need to help wipe out chronic hepatitis B, a disease borne by 300 million people

 

 

 

 

 

 

 

 

Nurses such as you and me – yes, that means all nurses (and our welcomed health care counterparts) – likely come across a patient or parent who declines vaccinations for themselves or their children. And it is not uncommon for nurses to be first in line to receive the unfavorable statements refusing these life-sustaining vaccines. 

While every nurse may provide vaccine education at some point in a patient’s life, those in neonatal and maternal-newborn nursing have a greater responsibility with the hepatitis B vaccine. It is for good reason the hep B vaccine is the first immunization given to newborns within 24 hours of birth, followed by a second dose at 1 months, and the third at 6 months. However, communicating those reasons to parents of our newborn patients takes a compassionate, strong and skillful approach. Especially when we are faced with resistance and the unyielding declinations for the hepatitis B vaccine.  

There are various clinical settings and times when nurses can educate new parents and those with children about how the hepatitis B vaccine works and why it is necessary. We have numerous opportunities to identify misconceptions, fears and inaccurate information a parent might have regarding the vaccine. When addressing the highly recommended CDC’s vaccine schedule with parents, the rule of thumb is letting them know to expect their child will get the hep B vaccine series starting at birth. It is typically at this time when pushback from the parents begins to emerge. First and foremost, determining the “why” in what is making the parent hesitant about or declining the hep B vaccine is vital when trying to help them understand the reason vaccination is strongly advised. 

Resistance to hep B vaccination typically relates to not understanding the risks of contracting the virus, a perceived low risk of exposure or safety of the vaccine. Educating parents about complications that acquiring hepatitis B can have on the body can emphasize the vaccine’s purpose. Nurses need to use language that is concise and easy to understand. Nurses can let parents know hepatitis B is a virus that causes inflammation of the liver that damages and compromises its function, which can and often does lead to liver disease and ultimately cancer. Unlike a common bacterial infection that can quickly be treated with antibiotics, acquiring a hepatitis B infection can mean living with a chronic, life-long and potentially life-threatening illness. And the vaccine was established to provide a solution to that problem.  

Parents who perceive a low risk of their child becoming exposed typically minimize the need for the vaccine. A major misconception is that individuals who have hepatitis B have engaged in risky sexual behaviors or are drug users. To counter this impression, we want to make it very clear that hepatitis B can affect anyone. In fact, 40% of people in the U.S. who have a new hepatitis B infection don’t have any known risk factors. It could be helpful to educate parents using real-life scenarios about how the risks are present outside of stigmatized behaviors. For example, educate them that hepatitis B can be spread if their child shares a razor, toothbrush or nail clipper with someone who has the virus. 

If a parent is on the fence about the hep B vaccine, they might come with assumptions rather than questions. They may state, “My baby is too young, he doesn’t have an immune system yet.” You can let them know: “The hep B vaccine is synthetically prepared with small bits of viral protein and does not contain any blood products. This means the vaccine contains no actual virus and cannot infect anyone.” Educating parents about what the vaccine is will help explain how it actually works. You could say: “By introducing a small part of the virus, the body will learn to recognize the virus in case of future exposures and will protect someone for a lifetime.” 

Parents will often raise safety concerns about the vaccine and the erroneous allegations that it can cause autism. This misconception is tied to a preservative (thimerosal) once used in vaccines and this misinformation still lingers on social media. The most effective way to communicate with parents who harbor this misguided belief is by emphasizing the information from trusted and reliable national public health agencies. Nurses could inform parents that thimerosal is no longer used in the hepatitis B vaccine (or any other childhood vaccine except flu), and a page on the Children’s Hospital of Philadelphia website (June 1, 2021, https://www.chop.edu/centers-programs/vaccine-education-center/vaccine-ingredients/thimerosal) explains why thimerosal in vaccines isn’t harmful. Also, the single study suggesting that link has been discredited and withdrawn from publication, and the physician-author has been banned from practicing medicine (The New York Times, May 24, 2010, https://www.nytimes.com/2010/05/25/health/policy/25autism.html). 

As for the hepatitis B vaccine, as you can read on the Hepatitis B Foundation’s website, “The most highly respected public health agencies and professional medical associations have rigorously studied the safety of the hepatitis B vaccine” (https://www.hepb.org/prevention-and-diagnosis/vaccination/vaccine-safety/). 

Hep B is known as a silent killer, and it is a vaccine-preventable disease at that. For nurses, addressing parents’ hesitancy and navigating a “no” for the hep B vaccine is priority when striving for maximum compliance. Nurses equipped with knowing how to voice the facts and recommendations in a way that doesn’t make parents feel argued with support a greater chance at swaying the decision to vaccinate their children. Using examples that parents can connect to helps achieve a level of understanding that can’t be reached with heavy scientific and textbook language. At the end of the day, if you’ve exhausted all resources and information and a parent still declines the hep B vaccine, simply document and hope for reconsideration down the road. 

This blog post is written by Lacey Hempeler, RN. 

Note: The Hepatitis B Foundation’s consult team can be reached via info@hepb.org. 

  

Podcast Recap: Barriers to Liver Cancer Surveillance

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent episode on the B Heppy podcast, Dr. Neehar Parikh, a hepatologist at the University of Michigan, discussed the link between hepatitis B and liver cancer, barriers to screening for liver cancer, and screening methods for liver cancer.  

Hepatitis B and Liver Cancer 

Most people are not unaware of the link between hepatitis B and liver cancer. Hepatitis B can cause liver cancer, especially when left untreated or unmonitored. The hepatitis B virus (HBV) can cause serious damage to liver tissue and result in the growth of tumors that may become dangerous over time. This is why doctors recommend patients living with hepatitis B to continue to monitor their liver health and take treatment if necessary to prevent the progression to liver cancer. The best way to check for cancer is by screening. It is recommended to get liver cancer screening (usually through an ultrasound that looks at damaged tissue or abnormal cell growth) once every six months.  

Barriers to Liver Cancer Screening 

There are several barriers to liver cancer screening at the provider and patient levels. For providers, many times liver cancer screening is not prioritized when compared to other types of cancer screening programs. This is partially due to the limited evidence on liver cancer screening benefits (even though data exists to show that liver cancer screening is valuable, it’s not as strong as the evidence used to back up other cancer screening initiatives like colonoscopy or breast cancer screening). This makes liver cancer a less valuable option for providers to recommend to their patients. Providers are also not always following recommendations or guidelines from liver societies on hepatitis B management and liver cancer surveillance. Liver cancer screening is also not included in the United States Preventative Services Taskforce (USPSTF), which is a tool used by most providers in the U.S. to recommend preventative services to their patients.  

From the patient’s perspective, liver cancer screening is not always discussed by providers. For people living with chronic hepatitis B, many are not aware of the link between the virus and liver cancer. They are less likely to ask more questions about monitoring their liver health if the option or recommendation for screening is never brought up in a conversation with their providers. For many people who need liver cancer screening, they have limited access to care (loss to follow-up, lack of health insurance coverage, etc.). Limitations with the electronic health records (EHR) system is a challenge for patients who may find it difficult to schedule appointments (sometimes patients are not sent reminders to get ultrasounds). 

For people living with hepatitis B, liver cancer is a serious health risk. It is crucial to make sure patients are aware of the link between hepatitis B and liver cancer, the role of screening in early diagnosis and prevention of advanced tumors, and the importance of monitoring liver health as recommended by liver societies and guidelines on liver cancer surveillance.  

Listen to Dr. Parikh’s full episode on B Heppy here: https://bheppy.buzzsprout.com/1729790/14248470-barriers-to-liver-cancer-surveillance-with-dr-neehar-parikh. 

Additionally, the Hepatitis B Foundation recently launched a Learn the Link campaign to help spread information on the link between hepatitis B and liver cancer. View all about the campaign and get access to free resources here.: https://www.hepb.org/research-and-programs/liver/hbv-liver-cancer-connection/ 

Podcast Recap: How Clinical Trials Work in the United States

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent B Heppy episode on clinical trials, Dr. Yasmin Ibrahim, Public Health Program Director at the Hepatitis B Foundation, discussed the process of how clinical trials work and the importance of clinical research in moving forward public health programs and interventions. 

What is a Clinical Trial? 

A clinical trial (also called clinical research) is the process for approving new medications or devices for a known health condition or disease. When people hear the term clinical trial, they may hink immediately that participants of that trial are at risk. What most don’t know is that before a medication or medical device is tested on human beings, it must go through a very rigorous process with approval from regulatory authorities and agencies. This is why clinical trials go through phases of approval and safety checks in the research process. We have outlined the phases of clinical trials below to help provide an understanding of the process.  

Pre-clinical or lab studies: Before the drug can be tested on human beings, it is thoroughly researched on living cells and then animals with similar biological makeup, to assess its efficacy (benefits) and safety. 

Clinical Phase I: Researchers test a new drug or treatment on a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify any side effects. 

Clinical Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety. 

Clinical Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely. 

Clinical Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug’s effect in many different populations and determine any side effects associated with long-term use of the product or drug. 

All new treatments must go through clinical trials before being approved for use by the United States Food and Drug Administration (FDA), European Medicine Agency (EMA) or any other local regulatory authorities depending on the country.   

Advancing and Sustaining Public Health through Research 

Clinical trials are important because they are the safest way to develop and discover new treatments that work to cure diseases or improve the health and quality of life of patients. Because clinical trials have very strict safety regulations, they also tell us if a treatment is safe for people to use.  

Eligibility Criteria for Participation in Clinical Trials  

Eligibility criteria for clinical trials depends on the type of research being conducted. If a vaccine is being tested, then most participants are healthy to assess the response of the vaccine on the body’s immune system and the ability to produce protective antibodies. In some clinical trials that focus on certain populations or multiple conditions, the criteria may be more specific (e.g., testing the HBV treatments on people living with hepatitis B and diabetes). Study design and objectives determine participant eligibility and criteria. 

Diversity and Inclusivity in Clinical Trials 

Historically, clinical trials have neglected participation from minority populations and under-served communities. For example, sub-Saharan Africa has one of the highest burdens of hepatitis B globally, but clinical trials for hepatitis B are inadequate in those areas. The people who need access to clinical research the most are often denied access to these opportunities due to geographical barriers, lack of political will, regulatory issues, and other logistical challenges. It is important to ensure that all people who are directly impacted by hepatitis B should have access to participating in clinical trials and affording innovative therapies to improve their quality of life. There are steps that pharmaceutical and biotech companies, medical researchers, and public health organizations can take to diversify participation in clinical research. This involves including local patient-centered organizations and patient advocates in the clinical trial participation recruiting process. Partnering with a community is a helpful strategy to build trust with the community and engage people in research. Communication is integral to ensuring that participants fully understand the extent of their participation and the goals behind the research. Participants are encouraged to ask questions from the recruiters before agreeing to participate in the research.  

Find Clinical Trials for Hepatitis B here: https://www.hepb.org/treatment-and-management/clinical-trials/ 

Questions to Ask Providers and Researchers about Clinical Trial Participation: https://www.hepb.org/treatment-and-management/clinical-trials/ask-a-doctor/ 

To listen to the full episode on our podcast, B Heppy, click here. https://bheppy.buzzsprout.com/1729790/13443280 

 

Podcast Recap: Current Treatments in Development for Hepatitis B with Dr. John Tavis

 

 

 

 

 

 

 

 

 

 

 

 

In a recent B Heppy episode, Dr. John Tavis, a molecular microbiologist at St. Louis University School of Medicine, shared updates on curative therapies for hepatitis B along with insights on how treatments for hepatitis B are researched and approved for use. 

Hepatitis B is a virus that can cause serious liver disease such as liver cancer or liver failure if undiagnosed, unmanaged or without proper intervention and treatment. While there is no cure for hepatitis B at this time, there are treatment options available to manage the virus. Research to find an optimal and functional cure for hepatitis B is ongoing and clinical trials have been very successful in advancing research pertaining to the cure.  

In some experimental studies conducted around the globe, 30% to 40% of patients have achieved functional cure. In smaller studies, approximately 50% of patients have obtained functional cure. However, research on the cure and the progression of these clinical interventions are still ongoing. While the future looks promising for a functional cure for hepatitis B, existing treatments should not be undermined or overlooked as they provide effective protection from serious liver disease such as cirrhosis or liver cancer.  

There are key terms that are important to understand related to drug development and the hepatitis B space. Below we describe complete, functional and partial cure definitions according to researchers.  

Complete, Functional, and Partial Cure 

Complete Cure: Elimination of all traces of hepatitis B including loss of surface antigen and HBV DNA. 

Functional Cure: the loss of hepatitis B surface antigen and undetectable HBV DNA levels, although trace amounts of HBV DNA may persist in the liver.  

Partial Cure: A stable suppression of the virus with undetectable HBV DNA levels. 

The progress on the cure: 

Current progress and research indicate that a combination of drugs will provide the best outcome as it is not likely that only one drug will achieve a functional cure for hepatitis B at this time. There are different types of drugs that are being studied and each treatment focus on a different aspect of the lifecycle of the virus to prevent replication and growth.  

Some of the current options being studied for hepatitis B treatment include: 

Antisense RNA and SiRNA: These drugs work by suppressing and destroying the viral messenger RNA, which is crucial to make proteins and replicate HBV DNA. Current drugs that use this mechanism to target the virus include Bepirovirsen. Clinical trials have shown effective reduction in HBV DNA and viral proteins.  

Suppressing and destroying the viral RNA (destroys proteins—RNA makes proteins,  

CAMs (capsid assembly modifiers): These drugs work by disrupting the formation of capsids. Capsids provide a protective space for the genetic material of the virus to make sure it is able to transfer to the host cell without any complications. By disrupting the formation of the capsids, the virus is unable to replicate itself as the genetic material gets destroyed during the process.  

NAPs (Nucleic Acid Polymers): These drugs work by blocking secretion of the viral surface antigen outside of the cells so the virus is unable to spread to other cells. In the process, the surface antigen drops in the bloodstream and the immune system is alerted to attack the virus.  

Nucleotide Analogues: These drugs are the first-line treatments for hepatitis B. Antiviral treatments like entecavir and tenofovir are incredibly effective in suppressing HBV viremia and preventing progression of the virus from becoming cancerous. Although they are not considered functional cure, these drugs have low toxicity and are effective in treating people living with hepatitis B.  

 

To stay updated on developments in hepatitis B research, check out our Drug Watch page: https://www.hepb.org/treatment-and-management/drug-watch-2/ 

To listen to the full episode on our podcast, B Heppy, click here. https://bheppy.buzzsprout.com/1729790/13238616-current-treatments-in-development-for-hepatitis-b 

Podcast Recaps: A Global Perspective on Stigma and Discrimination Against Hepatitis B

B Heppy Recap: A Global Perspective on Stigma and Discrimination Against Hepatitis B 

Catherine Freeland is the Associate Director of Public Health Research at the Hepatitis B Foundation. As a researcher and founder of the Foundation’s Hepatitis B Discrimination Working group, Dr. Freeland shares more about the impact of discrimination and stigma as it pertains to people living with hepatitis B.  

What is the difference between stigma and discrimination? 

  • It’s important to understand stigma and discrimination are different. Stigma is a social process that is characterized by being excluded, rejected, and devalued because of the social judgement associated with a certain condition. Although the literature on the topic is limited, it has been shown that stigma related to hepatitis B has negatively impacted the quality of life for those living with hepatitis B around the globe. Discrimination is different in that it is characterized by the laws and behaviors that limit opportunities for growth. For example, denying access to education or work because someone is living with hepatitis B is a form of discrimination. Discrimination is often a result of stigma.  

What are the causes for stigma and discrimination as it pertains to hepatitis B? 

  • Lack of knowledge and understanding about hepatitis B in the community is a root cause of stigma and discrimination. Most people are unaware of what hepatitis B is and how it can be transmitted. This often results in rumors, myths and misconceptions spreading in the community and unfortunately can alienate people living with hepatitis B.  

How does stigma and discrimination against hepatitis B affect the lived experiences of people in the community? 

  • When myths and misconceptions spread about hepatitis B in the community, people with lived experience often face discrimination. A lot of people are required to undergo health screenings prior to starting employment.  If they test positive for hepatitis B, they can be denied employment and/or can be fired from their jobs in many parts of the world. It can then be difficult to find another job and support their families. For people who wish to get employment visas to work abroad, they are required to undergo health screenings. In the Philippines and the Gulf Coast (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia and the United Arab Emirates countries), it is common practice to deny employment visas to people living with hepatitis B. In some countries and cultures, pre-marital screening. We have also heard cases of individuals living with hepatitis B experience more challenges in custody of their children in divorce or separation cases.  

How can we address these challenges and what is the Foundation doing to support people experiencing discrimination? 

  • It is important for people with lived experience to speak up and share their experiences of stigma and discrimination. At the Hepatitis B Foundation, we have a discrimination registry where people can fill out survey responses pertaining to any discrimination, they are facing in their home countries. The survey is free and open access. We also have a working group of experts consisting of people with lived experience and community leaders and partners. By raising awareness about discrimination, we are working towards changes in policy across the globe to reduce stigma, improve lives, and give people living with hepatitis B a voice that matters. Ultimately everyone has a role to play in addressing discrimination and it starts with education and sharing accurate information on hepatitis B and advocating against this discrimination and stigma.  

 

Listen to the full episode here! 

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  

The Purpose and Process of Storytelling

 

 

 

 

 

 

 

 

 

If you live in the U.S. and want to learn how to share YOUR hepatitis B story in a powerful and effective way to help raise awareness, educate communities, and inspire action around hepatitis B, consider applying to our next #justB digital storytelling workshop 

The #justB campaign empowers people with lived experience to share their story and use their voice to help increase awareness and advocacy around hepatitis B, combat stigma and discrimination, and encourage more people to get tested, vaccinated, and/or linked to care and treatment. Beginning in 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 41 participants from across 22 states in the U.S. and Canada. The #justB campaign includes stories that have been translated and published in 13 languages in addition to English – Mandarin, Cantonese, Vietnamese, Korean, Arabic, French, Mandingo, Twi, Yoruba, Tagalog, Khmer, Mongolian, and Chuukese.  

Attending a #justB digital storytelling workshop is a unique and uplifting experience that brings together people directly affected by hepatitis B in a supportive, small group environment (no more than 10 participants), where they can feel free to share openly about their experiences while learning to create short videos or “digital stories” in their own words. During the workshops, participants are guided through a “Story Circle” activity, receive feedback on selecting specific parts of their story to develop their script around, record a voiceover, gather photos and video clips, and combine these materials into short videos around 3-4 minutes long. After the workshops, participants become part of a growing community of more than 40 other storytellers who receive ongoing communications, resources, and opportunities to stay connected and engaged in hepatitis B advocacy and education.  

 

 

 

 

 

 

 

The storytellers gather around for a storytelling workshop.

 

Over the years since the initial launch of #justB, we have seen just how powerful storytelling is, and how personal stories can be used to promote greater awareness, openness, and discussion around an often stigmatized disease like hepatitis B. We have also learned that the process of storytelling – and participation in storytelling workshops – has a positive and lasting impact on storytellers themselves.  

For example, the following quotes (collected from storyteller interviews and audience surveys) highlight the impact that the #justB campaign has had on participants and viewers. 

Quotes from storytellers about their experience: 

  • “In the weeks after the workshop, I felt a lot more hopeful and supported.”  
  • “It was an awesome, life-changing experience and I look forward to doing more work with the Hepatitis B Foundation and various other organizations to raise Hepatitis B awareness and prevention.” 
  • “This storytelling workshop was a true blessing for me personally. Before, I felt isolated and disconnected. After the workshop and getting to know how Hep B has affected others, I feel a great sense of family and inclusion. My true hope is that our stories can change how others not affected view those who are and that more emphasis would be placed on the treatment and cure for this condition.” 
  • “I remember feeling very lonely when I first got diagnosed. I was, I don’t know, a leper or something but then to hear other people having gone through that same fear and that same sort of feeling of isolation, just super impactful. It made you recognize that this doesn’t have to be a lonely or solitary thing. There are other people who have the same struggles and experience the same fear, I guess, that you did. That was incredibly powerful, and definitely something that I didn’t know I was missing that.” 
  • “The workshop definitely changed my perspective on the power of storytelling for mental health.”  

Quotes from story viewers / audience members:  

  • “I really enjoyed the personal stories. Hearing first person experiences re: HBV has such a significant impact and realism that is not accessible when approaching the topic from a clinical or third person perspective. It’s very sad but powerful to hear the experiences re: stigma, isolation, perseverance, and how they are fighting for their families, friends, and others.” 
  • “It was very informative. I came in not understanding what it really was. Now I understand how important vaccinations are. It is an important topic to discuss, and I want to let my friends and family know how serious the problem is.” 
  • “The stories were extremely powerful. That paired with data and key messages [was] a very effective presentation.” 
  • “JustB storytelling was very moving! The diversity in storytellers was great.” 
  • “Very touching, impactful and inspirational! Thank you to all the storytellers for your bravery!”  
  • “The storytelling was wonderful. I will definitely be using the stories in our education and awareness outreach.”  

 

 

 

 

 

A postcard featuring quotes from the Dai’s Story.

 

Learn more about our current storytellers at www.hepb.org/justb. To apply for the workshop, fill out this form: https://storycenter.wufoo.com/forms/zyu5qsb02lscca. We accept and review applications on a rolling basis until all spots are filled.  

The next #justB workshop will take place this summer 2023 (tentatively in late July or August) and will be held in either Washington, DC or in the Doylestown/Philadelphia area. All travel, accommodations, and meals will be coordinated and paid for by the Hepatitis B Foundation. Participants will also receive a honorarium for completing the workshop.  

The Hepatitis B Foundation recently launched a new website for our storytelling campaign. Visit https://www.hepbstories.org/ to learn more!

If you have any questions or feedback, please contact Rhea Racho, Program Director – Advocacy and Engagement at rhea.racho@hepb.org. 

A Quick Introduction to Public Health Funding in the United States

Written by Frank Hood- Associate Director of Policy and Partnerships at Hepatitis B Foundation!

 

The COVID-19 pandemic put a spotlight on why countries need a robustly funded public health system that can respond to the needs of its citizens quickly. In the United States, that public health system is a patchwork of federal, state, and local departments, agencies, and programs. Each has their own rules and regulations, which can be challenging to navigate. You might have a hard time seeing how it all works together without falling apart. And you might struggle to understand how resources can find their way to the local health centers and community-based organizations doing much of the important health work on the ground. This blog post provides a basic overview of how public health funding works within the United States. 

Hundreds of federal departments, agencies, and programs funnel money into the public health system of the United States. One of the more familiar organizations is the Department of Health and Human Services (HHS). Among its many health-related functions, HHS handles disease prevention and outbreak response through the Centers for Disease Control and Prevention (CDC) and provides health coverage for underserved and older Americans through the Centers for Medicare and Medicaid Services (CMS). Other departments like the Department of Agriculture (USDA) may not seem like a key source of health funding, and yet support dietary health initiatives and help states build rural medical facilities through infrastructure investment programs.

The amount of funding these departments, agencies, and programs receive varies yearly. Some funding, like for Medicare and Medicaid, doesn’t require an annual vote from Congress (known as “mandatory spending” in policy-speak) and is just paid for as expenses are incurred. Other funding, like for the Health Resources and Services Administration (HRSA), requires a yearly vote of Congress as well as sign-off by the President. This is known as discretionary spending. Most US public health programs fall in the discretionary spending category. That vote happens each year after the House and the Senate go through a formal process to determine how much money every department, agency, and program in the entire federal government receives. This process also includes specifying any special instructions or conditions associated with the funding like restrictions on how the money can be spent or requesting a status report on the impact of a specific program

If Congress can’t agree on funding levels by the start of the new fiscal year, then a government shutdown occurs. In those instances, any non-essential federal program funded by discretionary spending would be forced to suspend operations, while state and local programs would still be able to function but would not receive federal funds during that time.

Once Congress approves funding levels, federal funds and agencies begin the process of distributing money to their various internal programs and to states and other localities. In the simplest terms, many agencies will send money to states in the form of grants that the states apply for by listing how they would use the money and what positive impact it will have on the state. The amount of funding that passes down to states depends on the function of the agency. State health departments receive the largest percentage of their funding from federal sources, so the grant-making process can lead to states competing for limited federal funds. Federal funds make up anywhere between half and two-thirds of states’ total health funding.

Much of the remaining funding for state health departments comes from their state legislatures. Each state has their own specific process, but most states mirror the federal approach of having their legislatures determine how much state funding should be given to various departments, agencies, and programs in the state and any restrictions on the use of that funding. Other sources of public health dollars include fines, fees, charitable donations, and public-private partnerships.

 

 

 

 

 

 

 

 

 

 

 

Generally, state health departments send their dollars to local health departments, which deliver direct care or education on the ground. The funding the state keeps  is often used to pay for state-wide health systems like health surveillance, emergency response, and prevention education. How states determine where money goes varies, but there are usually similarities to how federal departments and agencies determine which states should receive what funding with grant applications.  

Once local health departments and community-based organizations have funding in-hand, they then must spend it according to the rules and regulations set by the source (Congressional instructions, federal agency requirements, state requirements, etc.).  

At this point, you see the complex tapestry of public health funding in action in your community: the health screenings at the local fair, the vaccine drives at your local place of worship, and even when your child brings home a pamphlet from a health educational program held at school. It’s all public health funding in action. 

In addition to public funds, some programs are funded in part directly through donations from people like you. If a public health program means a lot to you, see if you can help the organization who put it together by volunteering, spreading the word or donating. 

 

References:

https://www.cdc.gov/about/organization/mission.htm 

https://www.cms.gov/ 

https://www.usda.gov/our-agency/about-usda/mission-areas 

https://crsreports.congress.gov/product/pdf/R/R47106 

https://www.crfb.org/papers/qa-everything-you-should-know-about-government-shutdowns 

https://www.astho.org/topic/public-health-infrastructure/profile/#activities 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.publichealthlawcenter.org/resources/state-local-public-health-overview-regulatory-authority