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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!

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! 

advocacy, Hepatitis B Advocacy, Hepatitis B Awareness

CHIPO Partner Highlight: Illinois Public Health Association

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation and is composed of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Over the past year, CHIPO has grown its membership to include nearly 50 community-based organizations and federal agencies, all of which are working to meet the common goal of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer partners, the Illinois Public Health Association, and their Outreach Coordinator, Monde Nyambe. Please enjoy a recent interview with Monde, as she describes her work, including successes and challenges, and the positive impacts she and IPHA have had throughout the state of Illinois.

 Could you please introduce yourself and your organization?

Monde: My name is Monde Nyambe, and I am the Outreach Coordinator for the Illinois Public Health Association, which is the oldest and largest public health association in the state of Illinois. I work specifically in the area of addressing hepatitis B among African communities around the state. IPHA has had a hep B grant for some time and the focus has actually primarily been on African communities – it was only in the past fiscal year that AAPI communities have been included in this grant as well. All of IPHA’s hepatitis B efforts do fall under the umbrella of the HIV/STI/viral hepatitis section. I started at the organization as an AmeriCorps member in November of 2020, and then was hired on to connect with African communities in the area, around the topic of hepatitis B. I am very glad to have had a role in really growing IPHA’s initiative and moving the outreach project along from the beginning – during my time here, I have built connections and made contacts with grassroots organizations and individuals, including a large and engaged group of African pastors in the area, who are vital to sharing important and valuable health information.

Could you tell me a little bit about what some of IPHA’s programs are that specifically address hepatitis?

Monde: A lot of the organization’s focus has been on educating institutions and utilizing African community members who are influential in their spheres to help raise awareness and educate community members about hepatitis B. One important undertaking has been to recruit MPH students of African descent to distribute materials and make connections, and to offer assistance with services – this has been quite effective. We have been able to utilize a partnership between a local Planned Parenthood and Merck Pharmaceuticals to meet community members where they are and to offer a sliding scale for hepatitis B vaccines. We have also been able to conduct outreach to ESL students at community colleges in the area and have been able to reach about 100 students in this way. This has been overall very successful and many of the students were quite engaged and had a lot of questions. One occasional barrier is that strict religious beliefs can sometimes impede open discussion of health issues like hepatitis B.

Which countries are primarily represented in your area’s African diaspora?

Monde: We have a huge Congolese community around Champaign and in Central Illinois, and there are many West African immigrants in the Rock Island area as well.

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

Monde: The biggest challenge is definitely awareness – people often do not realize that hepatitis B is a problem in their communities. Another challenge is finding individuals who are willing and able to do targeted health communication outreach (like the group of pastors mentioned previously). We have been able to do brief interviews with Facebook influencers, which have been helpful, and to build connections with passionate community members. One big lesson I have learned is to not be afraid to reach out to people that you may know personally and they in turn can reach out to their networks – personal relationships work well for this type of outreach!

Another big challenge in hepatitis B and health outreach to African communities is finding materials in the appropriate languages and dialects. Even after all my time in this country, I have not been able to find materials of any kind that are printed in my native language. Many times, materials are printed in standard languages like French, Swahili, and Amharic, but there are different versions of even those languages that many community members may not readily understand. Also, not everyone knows the official languages of different countries. If and when resources are created in a greater number of languages, it is important to pilot-test them in the communities to ensure that they are accurate and meaningful in the language as it is used in daily life.

Additionally, many people who are newly arrived to this country don’t know much about how to navigate the healthcare system here and don’t have health insurance. If they do have health insurance, they may not know that hepatitis B testing and vaccination are covered under their plan. One idea that might be helpful would be to have an easily accessible list of African healthcare providers or community health workers who are interested in serving their own communities. This might help people to feel more comfortable and that their healthcare provider relates to their personal experiences.

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?

Monde: I think again that awareness continues to be the biggest issue here and that continued engagement with leaders in this area is important and crucial for advocacy. People need to recognize the consequences of not testing for, preventing, and treating hepatitis B. Leaders need to also continue to hear about disparities that exist in healthcare, such as the high rates of hepatitis B in African communities around the US. Encouraging more community members to be involved in grassroots advocacy can also go a long way toward policy formulation, increased awareness, and, importantly, more funding for efforts to combat hepatitis B. It would be great if some of the same energy and efforts that have been used in the HIV space over the past several decades could be used in the hep B space as well.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Monde: Yes, definitely! High rates of hepatitis B are connected to economic status, English language proficiency, immigration status – even things like having knowledge of and access to public transportation to get to appointments on time is part of the issue as well. Understanding of cultural customs that may be confusing and pose challenges for those who are new to this country, like leaving a voicemail and navigating the phone systems of many doctor’s offices and clinics, should also be considered when ensuring that healthcare and health information are truly culturally and linguistically appropriate and actually accessible for all communities. The social determinants of health are important and must be considered in making decisions and designing everything from communications campaigns to policies.

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

Monde: I started out as a social worker and when I came to the US, became a nursing assistant. I worked in a nursing home, and, while in school, an advisor recommended a public health class to me and this changed everything! I started outreach work and really liked public health – I then became an AmeriCorps member and started my journey at IPHA! I have most enjoyed interacting with people from many different walks of life, answering questions, and offering guidance and clarity around hepatitis B. Seeing all different sides of the issue has been challenging and rewarding at the same time.

Thank you so much for taking the time to share your thoughts on your work and the role of IPHA in raising awareness and conducting outreach about hepatitis B to African communities across the state of Illinois. We appreciate all that you do!

Monde: Thank you!

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment

CHIPO Is Looking for New Members!

By Beatrice Zovich

 

 

 

 

 

Are you a member of the African diaspora in the United States? Do you work for an organization that serves these communities? We would love for you to join CHIPO – the Coalition Against Hepatitis for People of African Origin! CHIPO is a national community coalition, co-founded and led by the Hepatitis B Foundation. Our members include a variety of individuals and organizations from all over the country, who are interested in and focused on addressing the high rates of hepatitis B among African communities in the US., which are disproportionately affected by hepatitis B and liver cancer. In some parts of the country, rates of chronic hepatitis B infection in African communities are estimated to range between 5 and 15% of people. 

The purpose of CHIPO is to provide a space for an open exchange of ideas, best practices, and  information about how to dismantle some of the many barriers that stand in the way of preventing, diagnosing, and treating chronic hepatitis B infection, and preventing liver cancer, in African immigrant communities. These barriers include a lack of disease awareness, high rates of stigma, limited access to healthcare and services, and the silent nature of the disease, which often does not present any symptoms until significant liver damage has occurred – a process which could take years or even decades. As a result, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.

CHIPO, meaning “gift” in the Shona language, aims to disseminate accurate information about hepatitis B transmission, prevention, and treatment among community members, healthcare providers, and organizational leaders, and to improve the national capacity to raise hepatitis B awareness, testing, vaccination, and linkage to care among highly affected African communities. CHIPO also works to ensure that African immigrant communities are represented in HBV discussions and programs regionally and nationally. This is achieved through advocacy and the development of national and local partnerships. We currently have over 35 coalition partners around the U.S., dedicated to addressing viral hepatitis in African communities.

The activities of CHIPO are many and diverse. They include bimonthly virtual meetings, which often center around a presentation by a coalition member about measures or interventions that have been undertaken or research that has been done to achieve one of CHIPO’s objectives – namely improving awareness about and access to hepatitis B information, screening, vaccination, and linkage to follow-up care. Other activities include educational community events and presentations; supporting the design and implementation of initiatives to help accomplish CHIPO’s goals, such as the CDC Know Hepatitis B campaign (discussed below) and a recent grant from Bristol Myers Squibb to raise awareness about liver cancer and understanding about the link between hepatitis B and liver cancer in African immigrant communities; and promoting the work of coalition members locally and nationwide. 

An example of a project for which CHIPO provided great support and guidance was the production of the first nationally available hepatitis B educational resources, specifically for African populations. Created in collaboration with the Centers for Disease Control and Prevention (CDC), these materials are part of a train-the-trainer-based model, and include a suite of materials, including a downloadable presentation on hepatitis B for community health workers, a printable flip chart for direct community education, and supporting fact sheets and resources. The presentation and flip chart have also been translated into Amharic, Arabic, French, and Swahili. 

To read more about CHIPO, including previous blog posts, articles, and meeting minutes, and to access a full list of our members and the work they are doing around the country, visit our website. 

Does this work sound interesting to you? Would you like to work with us to achieve lower rates of hepatitis B and liver cancer in African immigrant communities through increasing awareness, screening, vaccination, and linkage to care? Join us! Anyone is welcome to join CHIPO – contact the coordinator to get involved. We hope to see you on our next call!

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, News

Hepatitis B Foundation Introduces 300 Million Reasons Movement

By Beatrice Zovich

The Hepatitis B Foundation is excited to launch a new movement called 300 Million Reasons, named for the almost 300 million people worldwide who are living with hepatitis B. The goal of this movement is to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B across the globe to become vocal advocates. We want to amplify the voices and stories of the millions of people directly affected by this disease, in order to make sure that hepatitis B is granted the funding, attention, and serious consideration that it deserves. The 300 Million Reasons movement will be officially launched in July of 2021, in time for World Hepatitis Day, but we wanted to begin sharing resources and information now. 

This movement is divided into four branches: B Informed, B Connected, B the Voice, and B the Change. Each of these arms is described below. 

B Informed

Hepatitis B can be prevented, treated, and managed. The B Informed branch of the 300 Million Reasons movement involves raising awareness about hepatitis B and liver cancer, providing accurate information, dispelling myths and misconceptions, decreasing stigma and discrimination, and providing simple hepatitis B educational tools, which will focus on transmission, prevention, liver cancer screening, and living with chronic hepatitis B. We have created a free and downloadable social media toolkit that can help spread the word about statistics, vaccines, testing, monitoring and care, symptoms, blood tests, acute vs. chronic hepatitis B and more. Check it out today! 

B Connected

You are not alone! The B Connected arm of 300 Million Reasons works to increase access to clinical trials, expand global connections to support people living with hepatitis B and their loved ones around the world, establish international peer mentoring programs, and create a social network and further community engagement opportunities for people impacted by hepatitis B. This branch of the movement will be modeled after current coalition work that has been done with Hep B United and the Coalition Against Hepatitis in People of African Origin. 

B the Voice

Your voice matters! The B the Voice component of the 300 Million Reasons movement is focused primarily on international storytelling and elevating the voices of those living with and affected by hepatitis B around the world. Stories of discrimination, stigma, screening, diagnosis, treatment, supporting community and family members, personal and larger-scale successes, setbacks and victories – all are important to share and learn about in order to raise awareness, inspire change, and eventually find a cure. Do you have a story to share? We would love to read it! Share your story today using this link. 

B the Change

Stand up, speak out! B the Change aims to increase activism among those living with hepatitis B and their loved ones and to use this as a tool to advance the cause of increasing knowledge about and support for hepatitis B among legislators and policy-makers. It will include national and international community ambassadors, strong relationships with the World Hepatitis Alliance and other key partners, outreach to people living with hepatitis B who have not had prior involvement in this effort, and advocacy training and opportunities. With knowledge can come action – let’s build a strong communication network to spread the word and B the Change to create a world that is Hep B-free! Become a hep B advocate today by joining our Action Center. 

The 300 Million Reasons movement will continue to grow and expand over the coming months and years, as more materials and resources are developed and disseminated. We hope you will continue to stay tuned on our website for updates and that you will join us in taking steps toward shining a light upon, and eventually eliminating, hepatitis B! Join the movement today!

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Research, United States

Eighth Annual Hep B United Summit a Success!

Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.  

The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B. 

The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year. 

 As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!

Hepatitis B Advocacy

The Journey to Hepatitis Elimination in Nigeria

Nigeria, with an estimated population of 190 million people, has a Hepatitis B prevalence of 8.1% and Hepatitis C at 1.1%, based on a recent Nigeria HIV/AIDS Indicator and Impact Survey(NAIIS) report. The NAIIS survey was a National house-hold based Survey that assessed the prevalence of HIV and related health indicators including the national prevalence of two additional blood-borne viruses: Hepatitis B virus and Hepatitis C virus. This gives an estimated number of about 19 million Nigerians living with Hepatitis B and or C.

The large population and relatively high prevalence rates of hepatitis B and hepatitis C, suggest that Nigeria should be considered a key country for hepatitis elimination efforts. Nigeria’s population was estimated at over 190 million in 2017, and growing rapidly, with projections suggesting it will surpass the United States to become the third most populous country in the world by 2050

The Journey to Hepatitis Elimination in Nigeria

In 2018, Patient groups and members of the World Hepatitis Alliance under the umbrella of the Civil Society Network on viral hepatitis in Nigeria partnered with the Federal Ministry of Health, and World Health Organization (WHO) to organize the 1st Nigeria Hepatitis Summit in Abuja, FCT. The meeting was the flagship event in the country that brought together 26 states Ministry of health officials, academia, and civil society groups to engage on ways to accelerate hepatitis elimination in the country. The event was supported by Gilead Sciences and Roche Products Limited, with technical support from Clinton Health Access Initiative.

In May 2019 as a follow up to the Summit, the National Viral Hepatitis Control Program, convened the first Review meeting of all Hepatitis Desk officers across Nigeria in Abuja, with the active participation of the civil society groups in the event. The meeting was organized to review the Hepatitis Treatment facilities directory and share best practices among key actors.

In response to high prevalence rates and in alignment with the global effort towards elimination, The Nigerian Ministry of Health developed the National Viral Hepatitis Strategic Plan 2016 to 2020, which maps out actions to put Nigeria on the path of hepatitis elimination. National guidelines for the prevention, care and treatment of viral hepatitis B and C were also developed and published in 2016, which centre on firmly establishing the management of viral hepatitis as part of universal health coverage. Although there is a paucity of data on modes of viral hepatitis transmission within Nigeria, local intelligence suggests that there are some modes of transmission that are particularly relevant, including mother-to-child transmission, healthcare related transmission due to poor infection control and traditional cultural practices, including scarification, female genital mutilation, male circumcision, and uvulectomy.

However, whilst this political will and strategic direction are promising, there remain substantial challenges to the realisation of these plans and the attainment of elimination goals in Nigeria.

Although there have been efforts to work towards universal health coverage in Nigeria, the health system has limited funding, and there is a need for coordination between the levels of government.

Challenges to accessing health care in Nigeria

Although guidelines and strategic direction have been developed to guide Nigeria’s response to viral hepatitis, important barriers remain in place, which must be surmounted to reach elimination targets. These include geographical and financial barriers to accessing testing and treatment and the availability of alternative tests and treatment providers that lack connection with the health system and efficacy for treatment outcomes.

Service barriers to hepatitis care

The allocation of health care resources, including the health care workforce, in Nigeria, is skewed towards secondary and tertiary services, which are predominantly situated in urban areas. Currently, the majority of hepatitis treatment in Nigeria is provided at tertiary level services, which are not easily accessible to large parts of the population.

Financial barriers to hepatitis care

For Nigerians that are able to access health care services, significant financial barriers remain to access testing and treatment for hepatitis. Despite an effort to develop a system of universal health coverage, the majority (approximately 70%) of health spending for health in Nigeria still comes from private expenditure. The majority of this is out-of-pocket spending, with only a small minority of Nigerians (approximately 4-5%) covered by health insurance. Costs of testing and treatment pose significant barriers to accessing viral hepatitis care, as tests, treatments, and vaccines must be paid for privately, and there is often limited availability of supplies.

This barrier of cost in accessing the hepatitis continuum of care is the primary drive towards quackery and unethical practices perpetrated by some organizations and individuals in Nigeria, providing alternative herbal and relatively cheaper treatment options to vulnerable and gullible patients.

The l ack of social and financial risk protection for Nigerians in accessing hepatitis continuum of care leads to high levels of poverty, vulnerability, and inequality in health

Elimination efforts in Nigeria

Clinton Health Access Initiative (CHAI) to date is leading in providing access to affordable treatment for Hepatitis C patients in Lafiya, Nasarawa state, through its partnership with the government. The program provides affordable HCV RNA @ $35 and generic DAAs/month @ $80/month. CHAI through its access program has succeeded in negotiating costs of HCV diagnostics in some health centres across Nigeria, such as Lagos, Abuja, and Kwara, where patients can access affordable HCV RNA tests.

Similarly, Taraba State Government in partnership with Roche Products is providing a Pegasys based HBV treatment program for Tarabans. The Yakubu Gowon Centre in partnership with Taraba state government is also providing affordable diagnostics and treatment on HCV for patients at its treatment locations in Takum local council of Taraba state. The centre recently donated some doses of DAAs for patients.

Birth-dose HBV vaccination: Nigeria has a coverage rate of about 51% birth-dose HBV vaccination rate in the country. Sadly, there are no HBV vaccination programs for at-risk populations such as Men who Have Sex With Men, health care workers, People Who Inject Drugs, Incarcerated Populations. There are no government-funded harm reduction projects for People Who Inject Drugs in Nigeria.

Over 80% of activities of civil society and patient groups in Nigeria are on-demand creation, awareness and testing and linkage to care for patients. In June 2019, Centre for Initiative and Development (CFID) and other civil society organizations in Nigeria received a donation of 120 doses of DAAs at the African Hepatitis Summit in Kampala, Uganda through the African Regional Board Member.

Nigeria and the 2030 target

Unless something drastic is done, Nigeria and most of Africa stands the risk of missing the SDGs Goal 3.3 and the WHO Global Health Sector Strategy on Viral Hepatitis Elimination target for 2030.

Nigeria, with its vast mineral, natural resources, and human capital, has what it takes to eliminate viral hepatitis by 2030. But what it lacks is the strong political will and financial commitment by governments at all levels to finance an elimination strategy!

References:

  1.  1st Nigeria Hepatitis Summit Report, 2019
  2.  World Hepatitis Summit 2015. New data shows relentless rise in hepatitis deaths.
  3. World Health Organization (WHO). Global Hepatitis Report 2017. Geneva: WHO, 2017.
  4.  WHO, 2016.WHO Global Health Sector Strategy for the Elimination of Viral Hepatitis: 2016-2030
  5. NASCP, Nigeria Viral Hepatitis Strategic Plan: 2016-2020
  6.  World Health Organization (WHO). Global Hepatitis Report 2017. Geneva: WHO, 2017:Availableat:apps.who.int/iris/bitstream/handle/10665/255016/9789241565455-eng.pdf;jsessionid=9DECA1FF83BC4A8CAE3BE2649662?sequence=1
  7. Centers for Disease C, Prevention. Progress in hepatitis B prevention through universal infant vaccination – China, 1997–2006. Morbidity and Mortality Weekly Report, 2007;56(18): 441–445

Hepatitis B Advocacy, Hepatitis B Treatment, Living with Hepatitis B

Fighting For Fair Treatment Access: Improved Medication Access In The U.S.

Ensuring that people with hepatitis B have access to affordable medications is one of our top priorities. If you or someone you know is currently prescribed Vemlidy (tenofovir alafenamide), entecavir, or tenofovir, we have important news that could help make your medications more affordable.

Vemlidy will once again be covered under CVS Caremark

The Hepatitis B Foundation, along with our network of patients, providers and partners, has successfully advocated for improved access to the hepatitis B medication Vemlidy in the US! In July 2019 CVS Caremark – one of the nation’s leading pharmacy benefit managers – stopped providing coverage for Vemlidy. This decision impacted thousands of Americans who rely on this life-saving drug to manage their hepatitis B.
Thanks in part to our advocacy, the company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! In addition, Gilead Sciences, the manufacturer of Vemlidy, is offering increased patient assistance for patients until the coverage takes effect.
What’s next: If you or a loved one are taking Vemlidy and have a CVS Caremark prescription plan, the date that coverage will resume depends on your plan type. On October 1, 2019, Vemlidy will be processed for those under the Advanced Control Specialty Formulary. For those with a Value Formulary, Vemlidy will be covered beginning on January 1, 2020.
To offset the costs, until January 1, 2020, Gilead Sciences will provide $1,000 a month (for up to $5,000) to offset the costs of treatment. Those interested can go to Gilead’s website and apply for a co-pay card ; insurance is not needed.
Low-cost options for patients on entecavir and tenofovir
n June 2019, the Hepatitis B Foundation partnered with Rx Outreach , a nonprofit mail order pharmacy, to offer two of the most common hepatitis B medications at low cost to eligible patients.
Eligible individuals can get a 30-day supply of tenofovir for $25 or a entecavir for $45. Eligibility is based upon household income, not on insurance status or prescription drug coverage. Our partnership with Rx Outreach will help to fill a gap in access to affordable medication and help to lessen the burden of one of the many forms of discrimination that those living with hepatitis B must face.
Visit the Rx Outreach website to learn more: https://rxoutreach.org/hepb/

Baruch S. Blumberg Institute