Hep B Blog
300 Million Reasons, About Hepatitis B, advocacy, Hepatitis B Advocacy, Hepatitis B Awareness, Living with Hepatitis B

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. 

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Treatment

CHIPO Partner Highlight: Hepatitis B Initiative of Washington, D.C.

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that is co-founded and led by the Hepatitis B Foundation and is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis B Initiative of Washington, DC, (HBI-DC), and their new Deputy Executive Director, Sandra Ashford. Please enjoy a recent interview with Sandra, as she describes her work, including successes and challenges, and the positive impact HBI-DC has had by expanding their organization and mission.

Could you please introduce yourself and your organization?

Hello, my name is Sandra Ashford. The current Deputy Executive Director for the Hepatitis B Initiative, Jane Pan, will soon be retiring, and I’ll be stepping into the role. I started out in hepatitis B as a Latino outreach coordinator and then worked with the Fairfax County, Virginia, health department. I have also worked with IPHI (Institute for Public Health Innovation) for COVID.

Can you tell me about HBI-DC?

HBI-DC was founded by Leslie Oh, whose mom and brother died in the same year of hepatitis B-related complications. After experiencing the pain of losing her family members she decided that she did not want anybody else to go through that struggle. As a result, she started HBI Boston, where she was studying public health at Harvard University at the time. While in school she would pass out informational pamphlets about hepatitis and engage in other advocacy efforts. She moved to Washington D.C. in 2006 and started HBI-DC, which is where our organization started and from where it continues to grow.

Could you tell me about what some of HBI-DC’s programs are that specifically address hepatitis and other health concerns in African communities?

The programs that we offer include free health screenings for hepatitis B, hepatitis C, and HIV, as well as free glucose and cholesterol screenings for the community. Our reach at HBI-DC includes individuals in Washington DC, Maryland, and Virginia and, since 2006, we have educated 80,000 individuals on hepatitis, and have screened 24,000 people for hepatitis B, and an additional 22,000 for hepatitis C. From these screenings, 1,100 people have tested positive for hepatitis B and 900 people for hepatitis C. For us, that is a big success because those are individuals who did not know they were living with hepatitis.

Our programs target high-risk individuals including immigrants, especially from Africa and Latin America. Any individuals who test positive for hepatitis B or C are linked to free health care, thus ensuring that follow-up and support are established, and people are not left alone with a positive hepatitis B or C diagnosis. We also provide health education in the native language of our clients, so that everybody is accounted for in these different communities.

Which countries are primarily represented in the African diaspora that HBI-DC serves?

The African communities that we have served so far based on our screenings and education activities come from Algeria, Angola, Benin, Botswana, Burkina, Cameroon, Congo, Egypt, Ethiopia, Ghana, Kenya, Guinea, Libya, Liberia, Morocco, Nigeria, and Sierra Leone.

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

A significant challenge we encounter at the community level is health misinformation. Social media platforms have contributed to the mistrust of providers and vaccine mandates, and there is a significant lack of knowledge regarding viral hepatitis. We overcome these challenges through a diverse and multilingual workforce. Our community is more receptive to testing and education if they feel like they’re speaking to a representative that looks like them, shares cultural experiences, and speaks their language. In addition, all our educational and preventative material is also translated into different languages. We also utilize social media channels targeted at these diverse communities to spread accurate information on hepatitis and target populations most at risk.  

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

A big barrier for us is the stigma associated with HIV and hepatitis. For this reason, when we go out to events and we’re talking to communities we try to offer comprehensive health services like cholesterol and glucose screenings. When individuals get glucose and cholesterol screenings, it gives us an opportunity to educate the clients on HIV and hepatitis, because we understand the stigma associated with these diseases. Another barrier is just overall awareness and education, but we try to develop trust in the community to overcome this. Once this trust is built, it’s easier for the community to be receptive to our services and educational messaging.
I think the digital divide is a major challenge facing African immigrant communities, which can affect all aspects of their health and healthcare. When we started outreach efforts during the COVID-19 pandemic, we wanted to keep in touch with a lot of the clients that we had tested and helped out just to see how they were doing. One thing that we saw was that there was a lack of digital skills and knowledge. For example, these communities were asking us for assistance in obtaining unemployment. Of course, we’re there to help them and to walk them step by step through the process but this lack of knowledge in the digital space was a big issue in connecting them to public health assistance programs during this time. This technological burden relates back to issues of connecting care in the community especially as they pertain to awareness, education, and linkage to social services. I think that overall, this traces back to social determinants of health, so I think more education and more support for the community are needed to address these concerns.

What are your favorite parts about your job? What got you interested in this work?

I started in public health with HBI, and the one thing I love is the challenge. It’s every day you’re coming in and there’s something that needs to be addressed or you are making an impact in a certain community and coming up with solutions. I think those are the best parts of being an executive director, knowing the impact you have on communities. The best story I can share is about when I was a Latino outreach coordinator, and we were screening for glucose and cholesterol. This one gentleman tried to come in numerous times and finally, we got him in for a screening. He was losing a lot of weight and couldn’t sleep at night, and he didn’t know it at the time, but when we tested him, he was diabetic. He was completely unaware because he had no healthcare access, and after the event, he went to the emergency room to receive care. He told us if it wasn’t for us, he could have died, and he said HBI-DC was like an angel to him. We also connected him with a great nonprofit clinic, La Clinica del Pueblo in D.C., and they were able to get him health insurance. Today he’s on health insurance and medication and doing well.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the U.S.?

I think some suggestions are to continue building community health worker programs. I think they make a big impact, especially regarding trust within the community and addressing the social determinants of health. I think we can reach out to more individuals in the Latino community and the African immigrant community and encourage them to take part in these programs. I believe support for these programs is important in closing health disparities. Also, I would avoid duplication of efforts to also achieve the greatest impact. So overall, utilizing our diverse partnerships to offer health services and close health disparities is the next step forward to reaching at-risk populations in the community.

Thank you so much for taking the time today, Sandra, and for sharing more about the amazing work HBI-DC has done in the community and will continue into the future!

Thank you!

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300 Million Reasons, advocacy, United States

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 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Prevention, Liver, Liver Health

Team Helpatitis: Students and Teachers Come Together to Raise Awareness of Hepatitis B in India! 

 

Hepatitis B is a critical public health crisis in India.  With over 40 million HBV carriers, it is estimated that over 115,000 people die each year from hepatitis B related causes and one million newborn babies are at risk of developing hepatitis B in India. 1 

In an effort to raise awareness for hepatitis B and contribute to the World Health Organization’s (WHO) viral hepatitis elimination plan, teachers and students at Amity International School in New Delhi, India launched Team Helpatitis to promote hepatitis B education.. Science teachers have integrated hepatitis B education in their extra-curricular activities to teach students about chronic hepatitis and liver health. School events and festivals have provided unique opportunities for students, teachers, and parents to come together and learn about the importance of prevention strategies like hepatitis B screenings in making India hepatitis free!  

Diwali Lamps Bring Hope and Awareness to the hepatitis B Cause in India 

During the month of Diwali, a religious festival of lights, Team Helpatitis students designed liver shaped oil lamps to promote awareness. These lamps are made from clay pots and are lit every year on Diwali to represent the transition from darkness into light in the coming new year. Students and teachers hope to combat the stigma and misconceptions associated with hepatitis B though these lamps. The lamps were distributed to school students and teachers to bring home and share the important message of hope and resilience with their friends and families. 

 

 

 

 

 

The liver shaped lamps were sculpted, packaged, and distributed by the students and teachers to raise awareness of hepatitis B during the Diwali festivities at their school.

Pin-O-Liv: Dart Throwing Competition to Understand the Difference between Good and Bad Liver Habits! 

The Winter Carnival at Amity International provided a platform for students to showcase their learning outside of the classroom and educate attendees about healthy and unhealthy habits for their liver. The students chose an interactive sport to keep the players informed and entertained. They created a dartboard with pictures representing good and bad lifestyle habits and their impact on the liver. Before the game, players were briefed on liver health and ways to keep the liver healthy and safe. Players were given five darts and challenged to hit the images with unhealthy habits.

 

 

 

 

 

 

 

 

 

Students participate in the dart-throwing competition to “kill” the bad habits that destroy our liver

Livbola: Students reinvent tambola to promote hepatitis B education among children and adults 

Tambola is a slightly different version of Bingo and is a beloved pastime of south Asian communities. The students were given a short presentation on hepatitis B and liver cancer. They were then introduced to the rules of the game and were quizzed on questions related to hepatitis and liver health. Prizes were distributed to players to encourage participation. The players included students, school staff, and community members.

 

 

 

 

 

 

School staff, students, and parents play the Livbola game during their annual winter carnival

The Hepatitis B Foundation was recently approached by the teachers at Team Helpatitis for a live session on hepatitis B. The Foundation met with the students and teachers via zoom a few weeks ago and discussed the physical, social, and financial impact of hepatitis B.  We also discussed the importance of preventative strategies like vaccines in promoting positive health outcomes for all communities.  

 

 

 

 

 

The students and teachers of Amity International School met with the Foundation for an introductory session on hepatitis B on zoom.

 

By participating in these activities, projects, and festivities with the help of their school’s leadership and administration, Team Helpatitis has expanded their reach beyond the classroom and amplified the voices of public health workers, advocates, and people living with hepatitis B! Check out Team Helpatitis’ social media channels to stay updated! 

Team Helpatitis’ Instagram:  https://www.instagram.com/helpatitis_aisv1_yppteam/ 

 

References: 

chrome extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.who.int/docs/default-source/searo/india/health-topic-pdf/factsheet-b-hepatitisday2016.pdf?sfvrsn=da61ef0_2#:~:text=In%20India%2C%20the%20prevalence%20of,D%2C%20followed%20by%20Aand%20C. 

Premkumar, M., & Kumar Chawla, Y. (2021). Chronic Hepatitis B: Challenges and Successes in India. Clinical liver disease, 18(3), 111–116. https://doi.org/10.1002/cld.1125 

 

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy

2022 Advocacy Year in Review

As we wrap up 2022, we hope you’ll take some time to look back and celebrate the exciting and important hepatitis B policy and advocacy achievements of the past year! Community partners and grassroots advocates around the world came together to advance our shared advocacy goals and working toward the elimination of hepatitis B.  

  

 

 

 

 

 

 

 

 

 

 

 

This year we celebrated big wins in the U.S. including:  

Congressional Funding for Pennsylvania Center of Public Health Excellence  

With the passage of the Fiscal Year (FY) 2022 Omnibus Appropriations Act in March, the Hepatitis B Foundation received $475,000 to create a Center of Public Health Excellence focused on hepatitis B elimination by providing expert resources, advice, training, capacity building and technical assistance for state and local partners on how to best prevent, treat and control hepatitis B, and to increase the rate of adult vaccination and testing for hepatitis B. The Center of Public Health Excellence was one of nine community projects that Congressman Brian Fitzpatrick secured funding for in the FY 2022 Omnibus. 

 

Implementing Universal Hepatitis B Recommendations   

In April, universal hepatitis B vaccination for adults aged 19-59 became official recommendation. HBF immediately embarked on a dissemination campaign to raise awareness of the new guidelines amongst various stakeholder groups. HBF also launched the Hepatitis B Vaccination and Screening Advisory Council, which is comprised of key stakeholders from the provider and patient advocate communities and hepatitis B experts. The Council held a two-day meeting in June to develop implementation strategies for universal hepatitis B vaccination and screening (expected in 2023) and will publish its findings in a white paper. 

 As our network of grassroots advocates and storytellers continues to grow, we have also expanded our involvement in state/local advocacy and global advocacy. Our ongoing advocacy efforts in the U. S. include calling on Optum to restore the hepatitis B treatment Vemlidy back to their health insurance formulary. Globally we continue to put pressure on Gavi to move forward with implementation of hepatitis B birth dose in member countries, urging members of Congress and President Biden to help end hepatitis B discrimination in the U.S. military, recognizing National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day in the U.S., advocating for universal adult hepatitis B screening, and increasing funding for hepatitis B and liver cancer. 

 

Updated U.S. Public Health Service Corps Medical Standards  

The U.S. Public Health Service (USPHS) Commissioned Corps announced in December that it is updating its medical standards to accept future applicants living with chronic hepatitis B and HIV. Previously, HIV and hepatitis B infection were both considered disqualifying medical conditions. The Hepatitis B Foundation became aware of this issue in late 2020, when an individual with hepatitis B applied to serve but was denied due to their hepatitis B infection. Working alongside partners, we successfully advocated for a change in this policy by meeting with senior administration official and Congressional champions, and getting language included in the FY 2022 House Labor-HHS Appropriations report urging the USPHS to allow officers with hepatitis B to serve in the Commissioned Corps.  

  

Check out the report to learn more!  

https://www.hepbunited.org/assets/Advocacy/5d40b3bcc9/2022-HBU-Year-in-Review-Final.pdf 

  

From all of us at the Hepatitis B Foundation and Hep B United, THANK YOU for your continued support and dedication to advocating for hepatitis B awareness, prevention, treatment, and research and combatting stigma and discrimination. We are so proud of what the hepatitis B advocacy community achieved this year, and we look forward to continuing to work together to build on the momentum of these accomplishments in 2023! 

HDV, Hepatitis D Drug Development, Hepatitis Delta (HDV), Research

What You Need to Know About the 2022 Liver Meeting and How It Relates to Hepatitis Delta

 

 

 

 

This year, the annual Liver Meeting, hosted by the American Association for the Study of Liver Diseases (AASLD), was held in Washington, D.C. The featured presentations included new innovations in liver transplant surgery, disease modeling (which is a process that uses cells to show how a disease develops and to test possible treatment approaches), and drug development. While an effective, functional cure for hepatitis B virus (HBV) is still 5-10 years away, researchers, scientists, healthcare providers, and people with lived experience all came together and agreed that more needs to be done to reduce the burden of liver diseases and improve health outcomes now. One highlight of the meeting was Dr. Francis Collins, former director of the U.S. National Institutes of Health and special advisor to President Biden, hosting a special session to introduce a national hepatitis C elimination plan for the U.S. Unfortunately, this plan is focused on hepatitis C. As a response, the Hepatitis B Foundation will soon send an advocacy letter pushing for the inclusion of hepatitis B and hepatitis delta in this plan. Make sure you are signed up for our Action Center alerts to stay engaged with hepatitis B advocacy efforts.

Of particular note at this year’s meeting were the presence of many patient advocates and people with lived experience, and an increased focus on hepatitis delta. One important hepatitis delta poster presentation was delivered by Dr. Tatyana Kushner of Mount Sinai Hospital in New York City, entitled “HDV Patient Perspective: The Impact of Disease and Current Unmet Needs.” By including the perspectives of people living with hepatitis delta virus (HDV), this study aimed to empower the patient community. Dr. Kushner and her colleagues collected data on people’s quality of life to identify unmet needs, barriers and gaps in HDV care (including disease management and access-to-care inequities).

The researchers found that a person’s care is affected in two ways: In the care they receive for their clinical diagnosis and their emotional journey after diagnosis. The participants’ experience of care was often negatively impacted by having a delayed HDV diagnosis, and limited access to specialized care and tolerable treatment options. Findings describe that the lack of specific and acceptable treatment options for hepatitis delta left people with little hope, which put an emotional burden on their life post-diagnosis. Due to the gaps in providers’ knowledge of HDV, participants held little trust in their healthcare providers. The study participants also shared that they suffered emotionally due to the stigma attached to their diagnosis.

Dr. Kushner and her colleagues call for an increased effort to educate healthcare providers on hepatitis delta, as their lack of HDV-specific knowledge drives health disparities or differences between groups, where one group is more burdened by a disease than the other. These are driven by unequal opportunities to achieve good health (CDC, 2020). Health disparities are preventable, and educating providers is the first step to overcoming these inequalities. Educating providers on HDV will lead to more rapid identification of the disease, as they will have a better understanding of the signs, symptoms and risk factors for hepatitis delta. Increasing advocacy efforts for point-of-care testing for both HBV and HDV in the U.S. will increase levels of testing and earlier identification of people at risk for the diseases. Timely diagnosis allows for people to be linked to specialty care earlier, ultimately improving health outcomes. Improving community awareness of HDV will combat stigma and likely reduce testing hesitancy, which can improve health outcomes. The researchers call for drug developers to meet the needs of the patient community by developing tolerable and hepatitis delta-specific treatments.

In terms of drug development, researchers presented on antiviral treatments for people living with HDV and discussed preferred outcomes of treatment, based on what they believed to be most helpful to each individual’s physical health. To understand these treatment considerations, it is important to review how HDV functions. Hepatitis delta virus (HDV) uses a person’s RNA (ribonucleic acid) to produce and replicate the virus, so high HDV RNA levels in the blood indicate severe infection, and low or undetectable HDV RNA levels indicate that the virus is not rapidly reproducing (Stephenson-Tsoris & Casey, 2022). A virological response is defined as a long-term period of low-level replication that leads to undetectable HDV RNA levels in the blood six months after stopping treatment, and this indicates viral suppression (Yamashiro et al., 2004). A biochemical response is defined as normalization of alanine aminotransferase (ALT) levels after antiviral treatment (Kim et al., 2022). When liver cells are damaged, they release ALT into the bloodstream, so high levels of ALT indicate that one’s liver is diseased or damaged (MedlinePlus, n.d.). ALT normalization is considered a good indicator that antiviral therapy is working because it means that there is less liver damage, liver disease is less severe, and people living with HBV/HDV are at less risk of harm (Kim et al., 2022).

One study of interest from the meeting was the D-LIVR study by Eiger BioPharmaceuticals, Inc.: Lonafarnib Global Study in Chronic Hepatitis Delta. This study consisted of 400 participants, who were all on treatment for 48 weeks, then followed up with researchers 24 weeks after treatment. In total, 50 participants received pegylated interferon (Peg IFN) treatment for 48 weeks; 125 participants received a combination of Lonafarnib, Ritonavir and Peg IFN; and 175 participants received the oral antiviral therapy Lonafarnib and Ritonavir. There were also 50 people on a placebo treatment. A placebo is a harmless pill that has no effect on a person, and is often used in clinical trials to test the effectiveness of a specific treatment being studied, in this case, Peg IFN, Lonafarnib and Ritonavir (Harvard Health Publishing, 2021). The researchers decided that they wanted to see a decline in HDV RNA (virologic response) and normalization of ALT (biochemical response) at week 48 as their study’s main outcome or proof that the treatment could work. In this study, an acceptable virologic response was defined as a “2log decline of HDV RNA levels,” which means they wanted to see HDV RNA levels decrease by 99% from the original levels that were measured before starting treatment (Wikipedia, n.d.).

Pegylated interferon (Peg IFN) is a protein-based medication that prompts the body to activate its natural immune system (induce innate antiviral response) (Zhang & Urban, 2021; Drugbank, n.d.). For Peg IFN-based treatments, researchers determine that undetectable HDV RNA six months after stopping treatment is desirable. However, researchers emphasize the importance of yearly HDV RNA post-treatment screening to monitor for viral relapses after treatment. For long-term treatment (over 48 weeks), a 99% reduction of HDV RNA concentration levels is an appropriate virologic response for non-interferon-based treatments, but more studies must be done to establish whether a person living with hepatitis delta is actually benefiting from the treatment (this is called clinical benefit). When establishing the clinical benefits for non-interferon-based treatments (or any new treatment), researchers can measure delays in disease progression or improvement of signs and symptoms of the disease, which includes symptom relief, improved functioning and improved survival rates (Lee, n.d).

Based on a variety of extensive studies (not just D-LIVR), the researchers decided to combine virologic and biochemical responses to try to demonstrate the clinical benefit of using ongoing antiviral treatment as a functional cure for hepatitis delta. They concluded that acceptable endpoints for HDV treatment studies include undetectable HDV RNA six months after stopping treatment, the loss of the hepatitis B surface antigen (HBsAg), and ALT normalization in people living with chronic hepatitis delta. This can also be considered a functional cure since there are undetectable levels of HBsAg and HDV RNA in the blood for a sustained period of time, even after finishing treatment (Wong et al., 2022).

While there is still time before we overcome the burden of hepatitis delta, the presentations from The Liver Meeting show us that researchers and scientists are constantly working to improve the lives of people living with hepatitis delta. Development toward a functional cure is progressing, and advocates are incorporating peoples’ lived experiences and perspectives into drug development and education. Collaboration between all these groups is the best way to move forward in the fight against hepatitis delta.

For more information on hepatitis delta, you can visit the Hepatitis Delta Connect website or review this hepatitis delta fact sheet.

References

Centers for Disease Control and Prevention. (2020). Health disparities. Centers for Disease Control and Prevention, Division of Adolescent and School Health, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. https://www.cdc.gov/healthyyouth/disparities/index.htm 

Drugbank. (n.d.). Peginterferon alfa-2a. Drugbank. https://go.drugbank.com/drugs/DB00008

Harvard Health Publishing. (2021, December 13). The power of the placebo effect. Harvard Health Publishing, Harvard Medical School. https://www.health.harvard.edu/mental-health/the-power-of-the-placebo-effect 

Kau, A., Vermehren, J., & Sarrazin, C. (2008). Treatment predictors of a sustained virologic response in hepatitis B and C. Journal of Hepatology, 49(4), 634-651. https://doi.org/10.1016/j.jhep.2008.07.013

Kim, S. H., Cho, E. J., Jang, B. O., Lee, K., Choi, J. K., Choi, G. H., Lee, J. H., Yu, S. J., Kim, Y. J., Lee, Y. B., Yoon, J. H., Kim, J. W., Jeong, S. H., & Jang, E. S. (2022). Comparison of biochemical response during antiviral treatment in patients with chronic hepatitis B infection. Liver International: Official Journal of the International Association for the Study of the Liver, 42(2), 320–329. https://doi.org/10.1111/liv.15086 

Lee, J. (n.d.). Defining Clinical Benefit in Clinical Trials: FDA Perspective [Presentation]. U.S. Food and Drug Administration, Center for Drug Evaluation and Research. https://celiac.org/main/wp-content/uploads/2015/04/great3-07.pdf 

MedlinePlus. (n.d.). ALT blood test. National Library of Medicine (U.S.). [updated August 3, 2022]. https://medlineplus.gov/lab-tests/alt-blood-test/ 

Raman, S. (2022 October 25). Administration eyes national hepatitis C treatment plan. Roll Call: Policy. https://rollcall.com/2022/10/25/administration-eyes-national-hepatitis-c-treatment-plan/ 

Stephenson-Tsoris, S., & Casey, J. L. (2022). Hepatitis delta virus genome RNA synthesis initiates at position 1646 with a nontemplated guanosine. Journal of Virology, 96(4), e0201721. https://doi.org/10.1128/JVI.02017-21 

Wikipedia. (n.d). Log reduction. https://en.wikipedia.org/wiki/Log_reduction

Wong, G. L. H., Gane, E., & Lok, A. S. F. (2022). How to achieve functional cure of HBV: Stopping NUCs, adding interferon or new drug development?. Journal of Hepatology, 76(6), 1249–1262. https://doi.org/10.1016/j.jhep.2021.11.024

Yamashiro, T., Nagayama, K., Enomoto, N., Watanabe, H., Miyagi, T., Nakasone, H., Sakugawa, H., & Watanabe, M. (2004). Quantitation of the level of hepatitis Delta virus RNA in serum, by real-time polymerase chain reaction—and its possible correlation with the clinical stage of liver disease. The Journal of Infectious Diseases, 189(7), 1151–1157. https://doi.org/10.1086/382133

Zhang, Z., & Urban, S. (2021). New insights into HDV persistence: The role of interferon response and implications for upcoming novel therapies. Journal of Hepatology, 74(3), P686-699. https://doi.org/10.1016/j.jhep.2020.11.032

Uncategorized

Living with hepatitis B and Diabetes

 

 

 

 

 

 

 

 

 

Happy Diabetes Awareness Month  

November is American Diabetes Awareness Month! The Hepatitis B Foundation invited Dr. Tatyana Kushner, Theresa Worthington, and Marcia Mukanga Lange from Icahn School of Medicine at Mount Sinai to explain more about the relationship between hepatitis B and Diabetes. 

Diabetes and hepatitis B are linked in ways that are important for patients and healthcare professionals to be aware of in order to improve outcomes in patients with chronic hepatitis B. The great news is that through healthy lifestyle changes, patients with chronic hepatitis B and diabetes can take ownership of their health and manage their diabetes.  

Hepatitis B May Increase One’s Risk for Diabetes  

While still controversial, some studies indicate that patients with chronic hepatitis B, and particularly cirrhotic (liver scarring) hepatitis B, are at a greater risk for developing type II diabetes. Type II diabetes is a medical condition in which the body is unable to use glucose (blood sugar) for energy. The liver is a key metabolic organ with a host of necessary functions, one of which is blood sugar regulation. The liver helps keep glucose levels normal in the bloodstream to prevent serious health issues. It is not clearly understood how hepatitis B increases one’s risk for diabetes, but research has shown that damaged liver cells could lead to abnormalities in blood sugar regulation.  Liver damage as a result of hepatitis B can promote the development of diabetes without effective management to prevent further complications. 

It is also important to know that having diabetes can put a person at risk for hepatitis B due to frequent use of glucose monitoring devices. People with diabetes must regularly monitor and track their blood sugar or glucose levels by pricking their finger using a glucose meter/monitoring machine. Failure to clean the equipment properly or sharing the glucose monitor with others can result in the spread of hepatitis B. Therefore, people with diabetes should make sure they are vaccinated against hepatitis B to reduce the risk of transmission.  

Hepatitis B Increases Risk of Gestational Diabetes (being diagnosed with diabetes for the duration of the pregnancy)   

Research has also pointed to an increased risk of developing gestational diabetes in pregnant patients with chronic hepatitis B, likely also due to damaged liver cells. Gestational diabetes is distinct from type I or type II diabetes in that it is diagnosed specifically during pregnancy. The cause of gestational diabetes is unknown but likely related to the hormonal changes that occur during pregnancy. Being overweight or having pre-diabetes are two well known risk factors, aside from chronic hepatitis B, that increase a patient’s risk for developing gestational diabetes. Gestational diabetes is associated with harmful outcomes for the mother and baby, especially if not well controlled during pregnancy. These may include: 

  1. High blood pressure during pregnancy 
  2. Premature birth associated with breathing problems 
  3. Complications during delivery (giving birth to a child weighing nine pounds or more) 
  4. Developing type II diabetes later in life 

Hepatitis B and Diabetes Comorbidity (being diagnosed with multiple conditions at the same time) Increases Risk for Cirrhosis and Liver Cancer   

Chronic hepatitis B patients with diabetes are also at a greater risk for a more rapid progression of liver disease, including progression to cirrhosis, a condition where the liver is scarred and becomes permanently damaged.  

Moreover, chronic hepatitis B and diabetes are known risk factors for hepatocellular carcinoma, a type of liver cancer. When a patient has both hepatitis B and diabetes, the risk of hepatocellular carcinoma is even greater, likely due to liver inflammation as a result of insulin resistance (a condition in which the body cannot break down sugar for energy). However, this risk can be reduced with proper blood sugar control. Interestingly, treating patients who have both diabetes and chronic hepatitis B with metformin, a diabetes medication that improves blood sugar levels, decreased the incidence of liver cancer to a greater degree than treating patients with insulin directly. Thus, both cautious and appropriate management of diabetes in HBV patients is critical.   

Other Metabolic Risk Factors  

Other metabolic-related risk factors for liver disease and liver cancer exist including nonalcoholic fatty liver disease (NAFLD). NAFLD is a liver condition associated with an accumulation of excess fat on the liver that is not caused by alcohol consumption. Common risk factors for NAFLD include type II diabetes and obesity. As vaccination rates and treatments for hepatitis B continue to improve, NAFLD is quickly becoming the leading cause of liver disease, liver cancer, and liver transplantation in the United States. Patients living with both NAFLD and HBV are more likely to have their liver disease rapidly progress. Thus, providers should counsel patients with chronic hepatitis B, with or without diabetes, to manage their weight through healthy eating and physical activity. For those with diabetes, optimizing control of blood sugar levels in order to improve both overall and liver-specific health is also key.   

References   

Cheuk-Fung Yip T, Wai-Sun Wong V, Lik-Yuen Chan H, Tse YK, Pik-Shan Kong A, Long-Yan Lam K, Chung-Yan Lui G, Lai-Hung Wong G. Effects of Diabetes and Glycemic Control on Risk of Hepatocellular Carcinoma After Seroclearance of Hepatitis B Surface Antigen. Clin Gastroenterol Hepatol. 2018 May;16(5):765-773.e2. doi: 10.1016/j.cgh.2017.12.009. Epub 2017 Dec 12. PMID: 29246694.  

Lei S, Chen S, Zhao X, Zhang Y, Cheng K, Zhang X, Wang Z, Sun Y, Wu S, Wang L. Hepatitis B virus infection and diabetes mellitus: the Kailuan prospective cohort study in China. Hepatol Int. 2020 Sep;14(5):743-753. doi: 10.1007/s12072-020-10086-2. Epub 2020 Sep 3. PMID: 32885367.  

Liu Y, Ye S, Xiao X, Zhou T, Yang S, Wang G, Sun C, Zhang B, Wang G. Association of diabetes mellitus with hepatitis B and hepatitis C virus infection: evidence from an epidemiological study. Infect Drug Resist. 2019 Sep 12;12:2875-2883. doi: 10.2147/IDR.S218536. PMID: 31686868; PMCID: PMC6751765.  

Tacke F, Weiskirchen R. Non-alcoholic fatty liver disease (NAFLD)/non-alcoholic steatohepatitis (NASH)-related liver fibrosis: mechanisms, treatment and prevention. Ann Transl Med. 2021 Apr;9(8):729. doi: 10.21037/atm-20-4354. PMID: 33987427; PMCID: PMC8106094.  

Tan Y, Wei S, Zhang W, Yang J, Yang J, Yan L. Type 2 diabetes mellitus increases the risk of hepatocellular carcinoma in subjects with chronic hepatitis B virus infection: a meta-analysis and systematic review. Cancer Manag Res. 2019 Jan 14;11:705-713. doi: 10.2147/CMAR.S188238. PMID: 30679924; PMCID: PMC6338123.  

Xu C, Chen J, Zhang PA. Relationship Between Diabetes Mellitus and Cirrhosis Risk in Chronic Hepatitis B Patients in Wuhan, China. Med Sci Monit. 2019 Oct 29;25:8112-8119. doi: 10.12659/MSM.917000. PMID: 31661471; PMCID: PMC6839395.  

Zhang, J., Shen, Y., Cai, H., Liu, Y.-M., and Qin, G. (2015) Hepatitis B virus infection status and risk of type 2 diabetes mellitus: A meta-analysis. Hepatol Res, 45: 1100– 1109. doi: 10.1111/hepr.12481.  

https://www.cdc.gov/diabetes/basics/gestational.html 

https://www.cdc.gov/hepatitis/populations/diabetes.htm 

 

HBV, News

Why is it important to support the Hepatitis B Foundation?

This is a guest blog by Jean Holmes, Vice President of Institutional Advancement at the Hepatitis B Foundation and Baruch S. Blumberg Institute.  

Jean Holmes VP of Institutional Advancement

Why is it important to support the Hepatitis B Foundation? 

Gosh, where should I start? First off, support this cause if you care about people living with hepatitis B. Because honestly, many people don’t. Most people don’t know much about hepatitis B, and people don’t support things they don’t know much about or care about. So, if you are one of the few that do, please consider it, because there aren’t enough of us. We NEED you. 

Second, if you do care about people living with hepatitis B, the Hepatitis B Foundation should be on your giving radar. Your support would mean so much, because we have so much to do together.  

If you’ve made it this far on our website, you probably already know that 300 million people in the world have hepatitis B. Every 40 seconds, someone dies of liver cancer as a result of hepatitis B. Maybe you know someone who has hepatitis B, died of liver cancer, or maybe you have hepatitis B yourself. YOU. MATTER.  

This website is full of information about what the team is doing across the globe to eliminate hepatitis B. They’ve accomplished so much this past year that will help us gain more momentum in 2023 and beyond. We have to leverage those gains! 

This team is a group of WARRIORS. They are so smart and so dedicated, it blows my mind.  

But they need you. 

Thanks again just for being here to care enough to read this post. You obviously care enough to make a difference, so let’s start there.  

We can’t do this alone. It takes a lot of people to raise their voices in order to bring about change. When you give to the Hepatitis B Foundation, you’re telling the world, telling elected officials, telling the people with power, that hepatitis B has a VOICE.  

Your voice.  

What can you do? 

Give. Even if it’s just $5, it helps. Give just once, or become a member of the Champions Club and give $5 a month. That helps the team keep the work going, and ensures that there’s always resources to help people living with hepatitis B. 

Share. Did you know that most people are more likely to support causes that are recommended by family, friends or coworkers? Use your voice! 

Engage. I’ll be holding a volunteer panel in early spring to talk with supporters about how we can generate more support and momentum. I need you. Email me at jean.holmes@hepb.org, or call 215-489-4946 if you want to be a part of it. There will be something for everyone to do. 

Listen, there is so much to do. This is going to be a big year, but we need your help. Put your running shoes on, we’ve got to get going! 

Hepatitis B Research, Research, United States

If You Have Hepatitis B, Donating Your Blood May Change the Face of Hepatitis B Testing.

The Hepatitis B Foundation has partnered with Plasma Services Group to educate people living with Hepatitis B about the critical need for blood donation. This is not like the local blood drives you always hear about. Instead, Plasma Services Group focuses on specialty plasma collection which supports the making of diagnostic tests used in labs around the world. The demand for HBV testing grows every year, but access to those tests is not assured. As you know, only 25% of people in the U.S. and 10% of people worldwide with Hepatitis B have been diagnosed. With your help, we can reduce those real-life barriers to Hepatitis B testing and improve lives. Follow the link.

How do I donate?

Donating your blood to Plasma Services Group is easy. After you complete this form, they will reach out to you if you are a good candidate for blood donation. If chosen, they will send a phlebotomist to your home to complete the blood-draw.  PSG compensates participants financially as a thank you for the trust, time and efforts associated with donation. This program is only available to U.S. residents who are preferably in the Northeast. You must be 18 years of age or older and weight 110 pounds or more. You must be living with chronic Hepatitis B, which means you have had Hepatitis B for over 6 months.

Why this is important to the future of Hepatitis B?

As you may know, access to good healthcare isn’t always easy. By creating new blood tests, we can help diagnose Hepatitis B more reliably which helps more people get into care and manage their hepatitis B. Your blood donation could directly impact the detection, care and quality of life for millions of people living with hepatitis B who have not been diagnosed yet, as well as those who are managing their care on a daily basis.

Despite the large population of people living with hepatitis B, it is hard for companies that source biological raw materials to recruit donors. Most people are unaware of the large amount of blood plasmas that are essential to manufacture test kits. Rarer subtypes that are prevalent in Africa and Asia, where the need for detection is the highest and growing the fastest, are even harder to find in N. America. By becoming a regular donor to Plasma Services Group, you are filling a vital role for the medical diagnostic industry and helping to close the gap between patient and care.

Get started today!

Fill out this form and Plasma Services Group will fill you in on next steps.

Baruch S. Blumberg Institute