Hep B Blog
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!

Hepatitis B Awareness, Hepatitis D Avocacy, Living with Hepatitis B

Elevate Your Voice

Almost 300 million people worldwide live with chronic hepatitis B, but most of their stories remain untold. Often this is due to the negative stigma surrounding the virus, fear of discrimination, lack of community awareness or understanding of the disease and lack of support for those who wish to speak out publicly about hepatitis B.

No one knows hepatitis B better than the people living with the virus. Elevating the voice of people who live with hepatitis B is so important to bring awareness to hepatitis, help fight discrimination, and keeping up the momentum to find a cure for hepatitis B. Storytelling is an important to way to talk about an individual’s journeys with hepatitis B.

Since 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 40 participants from more than 20 U.S. states and Canadian provinces. The #justB campaign empowers people with lived experience to share their stories with the goals of increasing awareness and advocacy around hepatitis B, decreasing stigma and discrimination, and promoting testing, vaccination and linkage to care and treatment.

The latest #justB workshop was held in Berkeley, Calif., from March 18-20, 2022. It brought together five highly motivated adults living with hepatitis B who wanted to learn how to share their stories to educate communities and inspire action.

We will be highlighting these patient advocates and their stories over the next few months. Here are overviews of Adama and Chelle’s stories:

Adama, who was born in West Africa and immigrated to the U.S. decades ago, recalls when he tested positive for hepatitis B and how he soon realized that the illness his mother suffered from must have also been hepatitis B. “As I began to learn about the virus, I realized, ‘Oh, I think that’s what killed my mom.” Having lost his mother to the disease, Adama knows the importance of testing, early detection and monitoring for those who are living with hepatitis B. “I take treatment, I learned how to take care of myself… But what about the people around me, in my community, who won’t even get tested? Everyone talks about HIV, about how to protect ourselves, but this hepatitis virus is too much ignored.”

Chelle, a Utah resident, speaks candidly in her story about the stigma she encountered after being diagnosed with hepatitis B in the 1980s. “I felt so isolated. I couldn’t even talk to my family… Sometimes I thought about all the stomach problems I had complained of as a kid. I had been adopted from the Philippines in the 1970s. I was tested for this and that, but not for hepatitis B. Testing for the virus wasn’t widespread at that time. I was called a hypochondriac when the doctors couldn’t figure out what was wrong.” Chelle is grateful that things have improved since then and that she was able to pursue a career in the medical field. But her experience still motivates her to continue speaking out and fighting against hepatitis B related stigma that persists around the world.

To watch the new #justB stories by Adama, Chelle, Wendy, DHE and FK, and to access the complete #justB video library with more information, please visit: www.hepb.org/justb.

How to Elevate Your Voice

Are you interested in sharing your journey with hepatitis B? The Hepatitis B Foundation has the B the Voice Story Bank which provides an online platform for people living with hepatitis B, their families, community health workers and health care providers to share their firsthand knowledge and experiences with a global audience. You can submit your stories using an online form, along with any photos and personal details you wish to share. Submissions are confidential and can be made without disclosing a person’s full identity.

We encourage you to share stories about your diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, services and programs and other related topics to not only help raise awareness for hepatitis B, eliminate stigma and discrimination, but to also inspire others to be brave in their diagnosis.

How Can Providers Elevate Individual’s Voices?

It is important for providers to also help elevate peoples’ who are living with hepatitis B voices. Healthcare institutions, organizations, and departments must develop relationships with people living with hepatitis B to establish trust and listen to what they want to see be done in the hepatitis B world. Their opinions are critical to develop effective programming around hepatitis B education, vaccination, testing, and eventually elimination. 

About Hepatitis B, HBV, Hepatitis B Treatment

Accessing Hepatitis B Treatment

Globally, almost 300 million people are living with hepatitis B. Of these 300 million people, the highest burden is in the WHO Western Pacific region and WHO African region with 116 million people and 81 million people living with hepatitis B. 60 million people are infected in the WHO Eastern Mediterranean Region, 18 million in the WHO South-East Asia Region, 14 million in the WHO European Region and 5 million in the WHO Region of the Americas.1

Of these estimated 300 million people living with hepatitis B, only 10% were diagnosed, and of those who were diagnosed, only 22% of individuals eligible for treatment received antiviral therapies.2 Moreover, only 2% of Africans living with chronic hepatitis B infection receive a diagnosis and of those individuals, 0.1% receive treatment.3

So why aren’t people living with hepatitis B on treatment? Cost can be a barrier.

The Hepatitis B Foundation compiled a list of hepatitis B medications and their costs for a 30-day supply in the U.S.

In the U.S., if someone does not have insurance or know how to access Medicaid or Medicare, they might not be able to afford medication. If they were to pay out of pocket, medication would total $11,484 on the low end of costs.4 One study reported that low household income and publicly funded health insurance were negatively associated with willingness to accept hepatitis B treatment.5

The high cost of hepatitis B management was found to be a barrier in a research study in Ghana. This study found that a typical cost of hepatitis B medication (Tenofovir), was Ghc 3600, or $670 USD annually.6 The average income is about Ghc 9,600 or $1,778 – this means the cost of hepatitis B medication would be about 38% of an average Ghanaian income.6

Another study in Burkina Faso found that cost was a barrier to access to treatment. For someone living with hepatitis B, the total cost for a full diagnosis is estimated to be $209 USD, when in 2020,5 33.7% of the population lived on less than $1.90 a day and the gross national income per capita in 2014 was $700.7 For the treatment itself, the study found that it cost $54 a year for tenofovir and $23 a year for lamivudine. One individual reported that they had to stop treatment because of the cost.6

What can be done to help with cost for hepatitis B treatment?

In the U.S., there are patient assistance programs that can help alleviate costs for some people. These special prices are offered by online pharmacies, co-pay assistance cards, or pharmaceutical companies. DiRx, a new online pharmacy,  has added two front-line medications for chronic hepatitis B infection – generic Viread® (Tenofovir) and generic Baraclude® (Entecavir) – and will be offering the medications at greatly discounted prices. Specifically, 30-count supplies of Entecavir will be $33, and Tenofovir $21, compared to the average retail price of $1,188. To access Tenofovir or Entecavir at discounted prices, patients should visit DiRxHealth.com and use promo code HBFSAVE. Any hepatitis B patient with a valid U.S. prescription will be able to order and benefit from free U.S. shipping, with no pre-qualifications and health insurance required. RxOutreach is another online pharmacy that provides reduced cost tenofovir and entecavir, and recently had a special offer for free medication for up to 12-months. For people in the U.S. taking Vemlidy, Gilead offers a patient assistance program for those who meet certain criteria. Patient Advocate Foundation and Prescription Hope offer co-pay assistance programs for eligible individuals with insurance who cannot afford their insurance co-pays.

Check out Medication Assistance Programs (U.S.)!

We must continue to bring awareness to hepatitis B. Through advocacy and continued discussion, we can improve political and government will which is most important for access to education, prevention, testing, and treatment of hepatitis B. Currently, hepatitis B is not included in The Global Fund To Fight HIV, Tuberculosis, and Malaria which offers countries like Burkina Faso and Ghana free treatment for these three diseases. We can advocate for hepatitis B to be included in this program or a viral hepatitis program like this which would help eliminate hepatitis B. Moreover, countries can use existing HIV infrastructure and incorporate hepatitis B into that space. Through cross organizational collaboration, advocacy, increasing education, and improving advocacy this can be accomplished.

The Hepatitis B Foundation is dedicated to accomplishing these efforts. We published Health Insurance Costs Impacting Shoppers Living with Hepatitis B – a comprehensive report that details our findings from analyzing 2019 and 2020 silver-level health insurance plans for potential discriminatory tiering of hepatitis B treatments. The report contains a list of things to consider when choosing health insurance plans, trends that may drive up the cost of treatment, and an overview of health insurance companies that displayed discriminatory practices. You can use the information on our site to help advocate for yourself, report your experience with discrimination on the Hepatitis B Foundation’s Discrimination Registry, or contact the Hepatitis B Foundation at discrimination@hepb.org.

 

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Web Annex 1. Key data at a glance. In: Global progress report on HIV, viral hepatitis and sexually transmitted infections, 2021. Accountability for the global health sector strategies 2016–2021: actions for impact. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.
  3. Polaris Observatory Collaborators (2018). Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. The lancet. Gastroenterology & hepatology, 3(6), 383–403. https://doi.org/10.1016/S2468-1253(18)30056-6
  4. https://www.nature.com/articles/d41586-022-00819-8
  5. Adjei CA, Stutterheim SE, Naab F, Ruiter RAC (2019) Barriers to chronic Hepatitis B treatment and care in Ghana: A qualitative study with people with Hepatitis B and healthcare providers. PLoS ONE 14(12): e0225830. https://doi.org/10.1371/journal.pone.0225830
  6. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., Hassan, M., Janssen, H., & Khalili, M. (2021). Patient Knowledge, Beliefs and Barriers to Hepatitis B Care: Results of a Multicenter, Multiethnic Patient Survey. Digestive diseases and sciences, 66(2), 434–441. https://doi.org/10.1007/s10620-020-06224-3
  7. Giles-Vernick, T., Hejoaka, F., Sanou, A., Shimakawa, Y., Bamba, I., & Traoré, A. (2016). Barriers to Linkage to Care for Hepatitis B Virus Infection: A Qualitative Analysis in Burkina Faso, West Africa. The American journal of tropical medicine and hygiene, 95(6), 1368–1375. https://doi.org/10.4269/ajtmh.16-0398
  8. https://data.worldbank.org/country/burkina-faso

HDV, Hepatitis D Avocacy, Hepatitis Delta (HDV)

Recent Roundtable Discussion Highlights Hepatitis Delta Virus

April 21st and 22nd, 2022 marked the occurrence of a roundtable meeting solely focused on hepatitis delta virus (HDV), which was jointly hosted by the American Liver Foundation and the Hepatitis B Foundation. This was one in a series of events taking place this year to raise the profile of hepatitis delta, a serious coinfection of hepatitis B virus (HBV) that is estimated to affect between 5 and 10% of people who are living with HBV. HDV is more severe than HBV alone, with a 70% chance of developing into cirrhosis or liver cancer if unmanaged, compared to an approximately 25% chance for those living with HBV alone. With approval of the first official treatment for hepatitis delta in Europe in July of 2020, expected approval in the United States later in 2022, and other treatments moving through the clinical trial pipeline, more is happening in the world of hepatitis delta than ever before. Despite the promising treatment landscape, the virus still remains significantly under-diagnosed (making estimation of true prevalence difficult), largely due to lack of awareness, low prioritization compared to other health conditions, and limited advocacy, and big questions persist about treatment equity, including access to knowledgeable providers, clinical trials, and available medications. The purpose of this roundtable was to begin a conversation among a diverse group of stakeholders about some of these issues, to bring attention to HDV and its potential consequences, to identify unmet needs in this area, and to prepare calls to action and next steps to address these needs.

Participants at the roundtable included individuals living with hepatitis delta, caregivers, healthcare providers, public health professionals, and representatives from community-based organizations. The conversation was very generative and really underscored some of the key issues that exist around hepatitis delta, including gaps in awareness and knowledge among medical and high-risk communities and limited access to and availability of HDV screening and care. These factors lead to under-diagnosis and under-surveillance, making the production of accurate data difficult, which in turn complicates advocacy efforts, since compelling data is often a key ingredient for policy change that might make screening, treatment, and linkage to care more available and accessible.

The ultimate planned outcome of this virtual event will be production of a white paper that will highlight key takeaways from the discussion, clearly outline unmet needs and priority issues for people living with HDV, and detail calls to action for stakeholders at every level to meet these needs and overcome some of the significant barriers and challenges that persist in diagnosing, managing, and treating HDV.

Another goal of the meeting was to begin to develop resources that can better support and engage the larger community around HDV awareness and advocacy – a first step toward this goal will be creation and dissemination of a visually appealing infographic, which will provide at-a-glance information about HDV and its estimated prevalence, transmission, prevention, testing, and treatment.

The white paper and infographic are expected to be complete by early summer 2022. The organizers of this roundtable meeting are hopeful that its outcomes will bring hepatitis delta virus more into focus for various stakeholder communities and generate more engagement and energy around this dangerous virus that has long been neglected and is not receiving the attention it deserves.

Hepatitis Awareness Month, Hepatitis B Awareness, Uncategorized

May Hepatitis Awareness Month #justBLoud

Hepatitis Awareness Month #JustBLoud blog

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

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

Talking points for your message may include:

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

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

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

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

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

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!

HBV

What Can We Do During National Minority Health Month?

As March wraps up and we look to April, let’s celebrate National Minority Health Month!

This month is all about building awareness around the disproportionate burden of premature death and illness in minority populations and encouraging action through health education, early detection, and control of disease complications. 

Why is There a Disproportionate Burden of Hepatitis B in African and Asian and Pacific Islander Populations?

To address this, we first must know some background information. The hepatitis B virus was discovered in 1965 by Dr. Baruch Blumberg, and the recombinant vaccine was approved in 1986. Almost 300 million individuals across the globe are living with chronic hepatitis B. Hepatitis B is a virus that affects your liver. Left untreated, it does damage to your liver and could lead to fibrosis, cirrhosis, or liver cancer.

Multiple factors influence why hepatitis B is so common in African and Asian Pacific populations. Hepatitis B is an ancient virus, and because it is transmitted through blood contact, it has been spread from generation to generation throughout Asia and Africa. Many countries have effective vaccination programs that have drastically slowed transmission over the past 15 years – but some countries, where up to 10% of the population has hepatitis B, still don’t provide universal vaccination to newborns, children or adults – so hepatitis B transmission remains high. Additionally, lack of awareness regarding hepatitis B transmission, lack of hepatitis B testing and data, stigma and hepatitis B related discrimination also play roles in the continued spread of hepatitis B in endemic regions.

In WHO Africa Region, 81 million people are living with hepatitis B, 116 million in the Western Pacific Region, and 18 million in the South East Asian Region.1 In the US, hepatitis B primarily impacts communities of color, especially 1st and 2nd generation Americans.

So, what does this mean for you in the context of hepatitis B during National Minority Health Month?

What Can You Do National Minority Health Month? 

Those from communities that are highly impacted by hepatitis B, including Asian Americans, Pacific Islanders, and people of African origin, are at higher risk for having hepatitis B. If you do not know your hepatitis B status, go get tested and encourage your family members and close contacts to get tested as well. Testing for hepatitis B is very simple and if your test results show that you need vaccination, there is a safe and effective vaccine.

Did you know that most transmission occurs from mother to child, due to the exchange of blood during the childbirth process? If you are expecting a baby, be sure your doctor tests you for hepatitis B – this way, the doctor can be sure that your baby gets the appropriate shots at delivery to prevent them from getting infected. If you live in the United States, health insurance, including Medicare and Medicaid, should cover the cost of hepatitis B testing for pregnant women. Find out more about the birth dose here.

We know getting tested for hepatitis B can be challenging. Schedules can conflict, the associated cost can be a barrier, and sometimes we do not want to find out our status due to possible stigma and discrimination. The good news is that you can reach out to your local clinic or community center to link to testing and vaccination for a low or at no cost with a culturally sensitive provider that might be able to speak your native language. Finding out our hepatitis B status can be scary. However, it is important to know because there are effective treatments for hepatitis B.

Find a testing and vaccine provider here!

Next, you can help create and build awareness of hepatitis B in your community. Do you and your community use social media like WhatsApp, Facebook, Twitter, and Instagram? You can share hepatitis B information with them here from the Know Hepatitis B Campaign from the Centers for Disease Control and Prevention (CDC) or follow the Hepatitis B Foundation on social media to share our posts with your friends and followers.

What Can Providers Do During National Minority Health Month? 

Providers also have a responsibility during National Minority Health Month. Providers can help educate their patients about hepatitis B, especially those at higher risk, and talk about testing and vaccination. Recently, the CDC’s Advisory Committee on Immunization Practices recommended universal hepatitis B vaccination for all adults ages 19-59. Healthcare practitioners should incorporate this recommendation into their practice to help reduce the number of new cases of hepatitis B in the United States.

Working together, we can commemorate National Minority Health Month and eliminate hepatitis B-related health disparities for the future!

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. https://www.pewresearch.org/fact-tank/2020/08/20/key-findings-about-u-s-immigrants/

About Hepatitis B, HBV, Living with Hepatitis B

Feelings of Sadness and Hepatitis B? – You Are Not Alone!

 

Why Did This Happen to Me? 

Being diagnosed with hepatitis B can be scary and maybe you feel like you can’t tell anyone, but you are not alone. Living with hepatitis B is more common than you think, about 300 million people are living with hepatitis B worldwide! You might be wondering how could this happened to me?

Did you know that hepatitis B is an ancient virus? It has been around for thousands of years, is most common in Africa, Asia, and the Western Pacific. And transmission of the virus is almost always from mother-to-child, due to the blood exchange during labor and delivery. Most people with chronic hepatitis B infection were infected at birth or during early childhood. There are other, less common ways hepatitis B can be transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles.

Feeling Sad After Your Hepatitis B Diagnosis?

 Sometimes after our diagnosis, we might feel overwhelmed with emotions. These emotions could be anger, sadness, anxiousness, numbness, or maybe a combination of everything. It never hurts to ask someone for some help. Consider going to a therapist. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your hepatitis B diagnosis. It can be freeing to talk to another person and have them support you on your emotional and physical health journey. If you don’t have access to a therapist or prefer to be more anonymous, you can join online support groups. Hep B Community is a great resource if you are in need of online global support – they are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.

You can also incorporate healthy habits into your lifestyle like taking daily walks, mediation, or incorporating any exercise you enjoy. Eating healthy, with lots of fruits and vegetables can make you feel better inside as well!

Can I Take Anti-Depressants with Medication for Hepatitis B?

 Sometimes, if we have persistent sadness for a long time it can be diagnosed as depression. Luckily, depression can be treated with medication called antidepressants. Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. It is a good idea to talk to your doctor about this. If you already have liver damage, or you/your doctor are concerned, your doctor can monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

Feeling sad and depressed is normal reaction to receiving news that you have hepatitis B. However,  hepatitis B does NOT define you and a gentle reminder is that you can live a long and healthy life with hepatitis B.

About Hepatitis B, HBV, Living with Hepatitis B

Zero Discrimination Day

Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.

Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.

Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.

Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.

This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.

On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.

Clinical Trials, HDV, Hepatitis D Avocacy, Hepatitis D Drug Development, Hepatitis Delta (HDV), News

2022 – The Year of Hepatitis Delta

2022 is shaping up to be a big year for hepatitis delta, the rare but serious virus that can co-infect people who are already living with hepatitis B. As a quick refresher, hepatitis delta is a virus that depends upon the hepatitis B virus in order to survive and replicate – so only those who are already living with hepatitis B can become infected with hepatitis delta. Hepatitis delta virus (HDV) is believed to infect between 5 and 10% of people living with hepatitis B virus (HBV). HDV can occur through either a superinfection or a coinfection. A superinfection occurs when someone who is already living with HBV contracts HDV, in which case there is a very high chance that the individual will develop chronic (lifelong) infections of both HBV and HDV. A coinfection occurs when both HBV and HDV are contracted at the same time – when this happens in adults, both infections tend to clear within six months and there is only a 5% chance that chronic HBV and HDV will occur. Chronic HDV is particularly dangerous because it advances progression to serious liver damage and liver failure much more quickly than HBV alone – 70% of people diagnosed with HDV and HBV will experience serious liver damage within 10 years without intervention, compared to 15-30% of people diagnosed with HBV alone.

So, What’s Happening in the World of Hepatitis Delta?

The past 18 months have been very important for hepatitis delta research and drug development. In July of 2020, the European Medicines Agency approved Hepcludex, the first-ever drug approved for treatment of hepatitis delta, for prescription in France, Austria, and Germany. Hepcludex works by stopping HDV from entering and infecting liver cells (and is known as an entry inhibitor). In 2021, MYR Pharma, the German company that originally developed Hepcludex, was bought by Gilead Sciences, Inc., which is based in the United States, and which has since filed a Biologics Licensing Agreement for approval of Hepcludex by the US Food and Drug Administration, which is expected later this year. At this time, there is not a timeline for when Hepcludex approval will be expanded to more countries and parts of the world. Prior to Hepcludex, the only drug available for hepatitis delta management, which was never officially approved, was called pegylated interferon alpha. This drug, still in use today, is only effective in controlling HDV in about 25% of people living with the virus and has challenging side effects that can negatively impact quality of life.

In addition to Hepcludex, two other promising drugs are in clinical trials, both developed by Eiger BioPharma in the United States. The first of these is called Lonafarnib, which is being evaluated for how well it works to target the protein assembly process, which keeps new viruses from being created (it is known as a prenylation inhibitor). Lonafarnib, in combination with another drug called Ritonavir, is currently in Phase III clinical trials (the phase in which the safety and effectiveness of a drug is compared to that of currently available treatments). These trials are fully enrolled, and data is expected by the end of 2022. Additionally, Eiger is currently enrolling phase III clinical trials for Pegylated Interferon Lambda, which works by stimulating the body’s own immune system to fight the virus. For a full list of drugs under investigation for hepatitis delta, including one from Janssen Research and Development and one from Antios Therapeutics, visit our Drug Watch page.

Are There Other Clinical Trials Happening for Hepatitis Delta?

 Yes! There are clinical trials happening worldwide to test many of the drugs listed above and more. You can check out our clinical trials page here. This page includes a detailed description of each clinical trial, along with information about where it is being conducted and how to contact the principal investigator (or person leading the clinical trial). This page also includes a helpful graphic describing the clinical trial process and what it takes for a drug to move from an idea into the real world. It is important to note that not all of the trials listed here are for the purpose of testing a medication – some are observational studies to monitor what are called disease biomarkers, which are physical measures used to monitor the progress of a disease and could include tests of blood or liver function, for example. Clinical trials are currently happening in Australia, Austria, Belgium, Brazil, Bulgaria, Canada, China, France, Georgia, Germany, Greece, Israel, Italy, Japan, Mongolia, New Zealand, Pakistan, Republic of Moldova, Romania, Russian Federation, Spain, Sweden, Switzerland, Taiwan, Turkey, Ukraine, the United Kingdom, the United States, and Vietnam.

When Will HDV Drugs and Clinical Trials Be More Accessible in More Parts of the World?

 This is unfortunately a difficult question to answer. Even though up to 10% of people who are living with hepatitis B are also living with hepatitis delta, there are not good systems in place to make sure that everyone who is living with HBV or who is at increased risk for HDV is tested and diagnosed, so there are not very accurate numbers about how many people in the world are living with HDV. Indeed, of the nearly 300 million people around the world who are living with hepatitis B alone, only 10% are aware of their diagnosis, so this number is undoubtedly far lower than even 10% for hepatitis delta. Without accurate information about how many people are living with the virus, it is difficult for drug and clinical trial developers to invest resources into studying or pursuing drug development or clinical trials for HDV.

Another problem is the many resources of time, money, and labor that are necessary for developing drugs, and preparing and running clinical trials. The development process for a single drug can take anywhere from 5-15 years and a much larger number of drugs fail to complete this process than succeed. Additionally, there needs to be some degree of existing infrastructure in a particular country in order to both support a clinical trial and ultimately to get a drug approved. Unfortunately, this kind of infrastructure is generally already established and easier to navigate in wealthier countries, so these are the countries in which clinical trials are generally held and in which drug approvals tend to happen first. Public health and clinical infrastructure is slowly developing and becoming more prioritized in different parts of the world and hopefully this trend will continue, but for the time being, the locations of clinical trials and approvals for important treatments point to the much larger issues of lack of access to health and healthcare in much of the world, that in turn stem from deep-seated poverty and inequity. Again, as health equity continues to be a focus of the public eye, these trends will hopefully begin to change, paving the way for greater access to healthcare for hepatitis delta, hepatitis B, and countless other health conditions.

What Is Hep Delta Connect’s Role?

 This year, Hep Delta Connect will continue its work to raise the profile of hepatitis delta, both in the United States and around the world. We are committed to building awareness through partnerships with community-based organizations, healthcare providers, and governmental agencies around the world and through dissemination of educational materials and programming. We hope to foster greater engagement of those living with and affected by hepatitis delta globally, more focused advocacy efforts to bring HDV into the spotlight, and increased screening, diagnosis, and management of HDV. We keep our website and social media channels updated regularly with program news and events – make sure to follow us on Facebook, Twitter, and Instagram and check out our website frequently! You are always welcome to connect with us anytime at connect@hepdconnect.org. We look forward to an exciting year of work on HDV!

Baruch S. Blumberg Institute