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advocacy, HDV, Hepatitis D Advocacy, Hepatitis Delta (HDV)

An Interview with Hepatitis Delta Advocate, Dr. Carla Coffin

Since 2016, the Hepatitis B Foundation has run a program called Hepatitis Delta Connect which aims to increase awareness of hepatitis delta and support for those living with the virus. For this month’s blog post, we sat down with Dr. Carla Coffin, a hepatologist in Canada, who is active in the hepatitis delta space.

Please introduce yourself and describe what you do and where you work.

My name is Dr. Carla Coffin, and I am a hepatologist at the University of Calgary in Alberta, Canada, I am a clinician scientist who does research on hepatitis B and this year I am the president of the Canadian Association for the Study of the Liver. Calgary is the founding/coordinating site for the Canadian Hepatitis B Research Network, which helps lead a collaboration of researchers, scientists, and practitioners across Canada for hepatitis B research and advocacy.

How common is hepatitis delta in your location or nationally?

That is an excellent question because until relatively recently, we didn’t know that much about how common hepatitis delta was in Canada. Most studies were single-site, single-center studies, showing about 1% prevalence overall in people living with hepatitis B. Then the Canadian Hepatitis B Research Network in collaboration with the National Microbiology Lab and the National Reference Lab in Canada did a study, led by Dr. Carla Osiowy, that showed, based on a retrospective screening of cases that were referred for hepatitis delta testing, that the prevalence was about 3% overall. Now, there’s more recent data that is consistent with that approximation of about 3%. We are also conducting a study that shows that for people who are being referred for delta screening, their overall positivity is about 4%. These are specific studies, but if you are just looking at universal screening rates of everyone who is living with hepatitis B who is potentially at risk for hepatitis delta, and not necessarily pre-identified, it’s much lower, maybe only about 1% or 2%.

What are the current screening recommendations and protocols in Canada for hepatitis delta virus (HDV)?

Historically, the recommendations from our major guidelines have been risk-based screening. So, people that are coming from areas where we know hepatitis delta is endemic. People that may have other risk factors such as a history of injection drug use or clinical characteristics that might trigger the clinician to suspect hepatitis delta co-infection. But based on that, I think that people are missed or are not diagnosed, so there’s inaccurate epidemiology just on risk-based screening. Our updated hepatitis B guidelines, which hopefully will be published in 2025, are more consistent with other expert recommendations to do universal screening. So at least a single, one-time test will be recommended for all people living with hepatitis B, to screen for hepatitis delta. And many of our laboratory partners agree with these recommendations. So hopefully there will be a change in the near future for that.

Do you think the reported prevalence is accurate or are people missing?

I would say that the current reported epidemiology of about 2 to 3% is likely to be accurate, but without having a robust universal screening program and robust reporting of hepatitis delta-positive cases, then I can’t say that with 100% confidence. One of the metrics that the Public Health Agency of Canada is advocating for is to have more robust data collection on hepatitis D epidemiology. That’s one of the calls by Action Hepatitis Canada, which is an advocacy group.

So, I think the epidemiology is accurate based on the data we have, but I can’t be 100% confident until we do more robust studies.

What do you think could help to address some of the underdiagnosis of hepatitis delta globally?

We need universal screening to ensure that people are diagnosed and not just rely on risk-based testing. We talk about knowing where hepatitis delta is endemic, but we should also recognize that there are probably countries where the prevalence is higher, but because of a lack of screening, we don’t know where it is actually endemic.

Even in my practice and just this week, we came across a patient that had been followed in our clinic for 15 years with hepatitis B and we only diagnosed this person with hepatitis delta recently, because we hadn’t screened it before.

And I think the other important thing is to increase awareness among health practitioners. A specialist might know about hepatitis delta, but a primary care provider or non-hepatologist would be left less aware. Increase education of healthcare practitioners to say, you know, if your patient has hepatitis B, they should be screened for hepatitis delta.

What do you usually do to help patients manage hepatitis delta?

Well, I think the first thing is you need to explain as clearly as possible exactly what hepatitis delta is and how you get hepatitis delta. How do you prevent it from spreading?

Explain how it’s transmitted by sharing blood and body fluids, highlighting that if you get the vaccine for hepatitis B, that protects you against both B and delta. Then explain what delta can do to your liver and how it can increase your risk of getting liver damage, or liver scarring or cirrhosis, how it increases your risk of getting liver cancer, and the importance of having regular checkups on your liver. So, regular blood tests and regular ultrasounds for monitoring for liver disease and for liver cancer. A lot about management is empowering the patient and giving them educational resources. Then the other thing is to discuss the treatments. There is only one treatment approved for hepatitis B in Canada, and you can use it for hepatitis delta, and that’s interferon. That’s the only thing we can currently use to treat hepatitis delta.

If/when a new drug is approved in Canada, do you think distribution and uptake will be straightforward or do you perceive challenges?

Yes, there will be many challenges. Part of it stems from underappreciation of hepatitis B as well as hepatitis delta. So, if a new drug is approved, it may be a challenge just to raise awareness about it.

And the second thing is that health care is federally funded, but the funding is then sent to each jurisdiction. The provinces and territories decide how healthcare funding is spent, and then there’s a complex approval process. It starts with Health Canada approval and then there’s this pan-Canadian drug agency called CADTH, the Canadian Agency for Drugs & Technologies in Health, that reviews the medication and sees whether or not they would recommend it. Then each provincial agency looks at the review by CADTH and decides if they want to have it on the formulary.

So, it could be time-consuming, complex, and challenging because of these factors.

Can you describe some of the advocacy efforts in which you have been engaged on hepatitis delta at different levels, and with different stakeholders?

Yeah, so I’m happy to say we’ve been having some success with advocacy. So different stakeholders and partners include Action Hepatitis Canada, the Canadian Liver Foundation, and our professional organization, the Canadian Association for the Study of the Liver. Activities we have done include going to Parliament Hill in Ottawa and holding our Annual Viral Hepatitis Elimination Day on May 9th. We’ve done that now for three years. With the help of all these partners and stakeholders, we have been engaging various governments (so government ministers at the provincial level and at the federal level), and also working with our federal health agencies (so the Public Health Agency of Canada) and having discussions with them to increase the messaging about hepatitis delta.

Are there any messages about hepatitis delta that you would like to share with policy or decision-makers?

I think you need to start with the patient’s voice. What I found most striking when we were meeting with the different policy decision-makers and government officials was that the physicians or the experts could talk about hepatitis B and talk about hepatitis delta and you didn’t see the same impact, but we brought patients with us when we had our meetings and when the patients spoke up and talked about their lived experience, you could really see their story having a strong impact. Then, also try to support the work of our partners.

What are some possible programs or initiatives that can help raise the profile of hepatitis delta and improve participation in the care cascade?

A lot of the people affected by delta are non-Canadian born, so there are a lot of challenges in navigating the healthcare system and language barriers. If we had more in terms of language or translations, I think that would be a good way to increase participation in healthcare and potentially raise the profile. The second is the education of healthcare practitioners, going beyond the specialist, and talking to primary care and family doctors.

Also, perhaps starting at the community level, at a non-academic center to raise more awareness about hepatitis delta and involving people with lived experience. But that’s a bit more difficult because there are so many, at least in Canada, challenges with understanding the language and understanding that patients often have many other challenges that it’s hard for them to think about their health care.

Do you have any final thoughts on hepatitis or hepatitis delta?

There’s been a lot of progress on hepatitis B with the drugs that we have currently, the effective nucleoside analogs, and with the hepatitis B vaccine, of course. It’s a remarkable vaccine, but we need more research and investment in both basic science research to try and find a cure for hepatitis B, and more public health research and investment to reach those that are living with hepatitis B, to provide them treatment and limit financial barriers. Also, more research and investment for hepatitis delta and testing. There’s not even a standardized test for delta. So, my final thought would be that we’ve done a lot, we’ve made progress, but there’s still more work to be done, and we need more government and industry funding.

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

Read about the Hep B Foundation’s Newly Launched Learn the Link Campaign with Dung Hua of the Vital Access Care Foundation

This month, we spoke with Dung Hua of the Vital Access Care Foundation, formerly known as the Vietnamese American Cancer Foundation. Dung and her team continuously work to address the needs of the Vietnamese community in Orange County, California and the surrounding areas. Dung spoke to us about her experiences addressing hepatitis B and liver cancer in this community, as well as her contribution to the Learn the Link campaign, which officially launches in February 2024. Dung shared the challenges she faces, her rewarding experiences and the many ways she works to connect with and educate her community. 

The Learn the Link campaign was created to raise awareness about the link between chronic hepatitis B infection and liver cancer in a culturally appropriate way for communities that are most impacted. It was informed by speaking directly with community members and created with their needs centered and prioritized. The Hepatitis B Foundation held focus groups and assembled an advisory committee to learn about the needs and concerns of the communities for which the educational materials were being created to ensure that the materials were informative and sensitive to the traditions and norms of different cultures.  

Can you introduce yourself and your organization? 

My name is Dung and I work for the Vital Access Care Foundation. We recently underwent a name change because we expanded our services to not only focus on cancer, though The Cancer Continuum of Care, and our liver cancer and hepatitis B programs are the primary focus. We started in 1998 and provided general cancer assistance services, which later developed into a breast cancer focus. In 2003, we started the liver and hepatitis B programs. One of our founders is an oncologist and the other is a gastroenterologist who provides consultation and guidance for our hepatitis B and liver cancer programs. 

Can you tell me about your organization’s programs that address hepatitis B and liver cancer directly? 

Our hepatitis B and liver cancer programs focus on the Vietnamese community. We provide outreach, education, patient navigation and screening. We start with education because many people in this population are not aware of hepatitis B. We host community screenings and bring screenings into the community at churches and cultural events. People are more willing to get screened when we bring screenings to these events. If someone tests positive for hepatitis B, we provide patient navigation and linkage to care. If someone needs to be vaccinated, we provide guidance to link people to the vaccine. If a case is more complicated, we consult with a board member who can provide a professional consultation at no cost. During the pandemic, we tried to tie hepatitis B to COVID-19 and encourage people to get the COVID-19 vaccine and a hepatitis B screen at the same time. We leveraged our hepatitis B vaccine experience and surprisingly, a lot of people were willing to “get poked” twice in one day. 

Can you tell me about the community that your organization serves? 

We focus on the Vietnamese American community in Orange County. This community consists of  immigrants and refugees. In this community, there is still a lot of stigma around hepatitis B. Many people still believe that you can get hepatitis B from sharing a meal with people who are positive. In the Vietnamese community, there’s a saying: “If you sweep the floor, then you find garbage,” which is an idiom for avoiding the doctor; if you don’t go to the doctor, then you won’t know you’re sick. Culturally, you only share what is good. There’s a stigma with seeking help. You’re not supposed to share that you’re weak or struggle, which can lead people to internalize their pain. 

In addition to stigma, many people deal with undiagnosed mental health issues and the challenges of moving to a new country. This community also has lower rates of insurance coverage, which can make receiving routine medical care difficult. The Asian community also deals with the model minority misconception, which can be harmful because many people stereotype Asian people as well educated with a stable income, which isn’t always true.  

Many of the people we serve either speak limited English or no English at all. When people come to the United States (US), they need to immediately find a job and are often classified as low skilled workers. It’s hard for recent immigrants and refugees to have upward mobility. However, many people are motivated by creating better opportunities for their family and children.  

What are some challenges you face in addressing your community’s health concerns? 

The biggest challenges are stigma around disease and having culturally and linguistically appropriate materials. Languages are complicated. Different waves of immigration affect the way that you can communicate with people because languages change over time, which means finding a balance between older and newer languages and dialects is important. It continues to be a learning process for me, as I am exposed more and more to people in my community. It’s important and difficult to be responsive to stigma and all language and cultural barriers, but it is also the most rewarding part of the work.  

Why do you think that hepatitis B and liver cancer educational materials are so important for your community? 

They’re important because knowledge is power. The key to improving is understanding and knowledge, which comes from education. People won’t know what’s best for them if they don’t know the information, which needs to be reinforced through repetition. If people do things and they don’t understand why they are doing them, the behavior won’t last. But if they do understand, they can continue those behaviors and help to spread that information to others. 

What was your experience facilitating the focus groups and serving on the advisory committee that informed the Learn the Link campaign? 

I was there to support and provide observation of the focus group. What I remember is that the community members were very engaged. They have personal experience with hepatitis, which empowered them to engage more. It was a safe space for them to provide feedback. It was empowering for them to be a part of the process and to realize that they are being listened to. The effort of this project to create culturally appropriate materials and seek out feedback from this community allowed people to feel like they made a meaningful contribution to something important. 

While serving on the advisory committee, I remember a number of us were brought together from many different communities and we provided our thoughts and feedback on the project. I enjoyed the opportunity to hear the needs, concerns, and feedback from communities that we don’t typically work with. I found out that many things are similar among diverse communities and it was helpful for me to have the opportunity to learn more about other communities. Seeing everyone at the table providing their perspectives and hearing about the commonalities and the uniqueness was a very interesting experience. 

Why is it important that organizations speak directly with community members when creating campaigns like “Learn the Link”? 

It’s important for any campaign or activity to focus on the community. To be responsive to the community, we must listen to them. We don’t want to create something that we think is the best but doesn’t work for the people that it’s supposed to work for. That direct connection and relationship that allows community members to feel comfortable sharing direct feedback is the key to successful outreach and education.  

What is the most effective way for organizations to engage with your community? 

The most effective way to engage with the community is meeting them where they are. Being willing to go out of the way and find community members, and being open to understanding their needs and concerns is important. We can’t just work 9-5, we have to go out and find them in the community outside of regular working hours. We try to meet community members at flexible hours, host community meetings on the weekends, meet them at the temple or meet them at the park. We try to listen, understand and build rapport.  

Understanding the cultural and generation differences is important as well. For the Vietnamese population specifically, word-of-mouth is powerful. Information spreads in the community through word-of-mouth and can spread like wildfire.  

Connecting with community leaders and other people and organizations who work with the community directly is another way to connect with people. This stems from the immigrant and refugee background; people who lived through the war have a hard time trusting public entities but have trust in the people that they’ve built a rapport with. 

Do you have any final thoughts or comments about the “Learn the Link” campaign and its potential to improve the health practices of the people in your community? Are there any further materials you hope to see in the future? 

I checked out the materials when they were launched and pulled materials to show to a new employee, and I noticed that all materials were in English. When all the translations are available, it will be great to share with not only the community, but with people who work with the community as well. Hepatitis B may not be people’s priority, but with promotion, these materials can remind people that this silent killer is still around and there are resources available.  

What was your experience in helping to review and edit one of the final peer-reviewed manuscripts that will be submitted for publication from this project? 

There were a lot of words to read! Attending the advisory meetings, attending the focus groups, and reading the manuscript was spread out over a long period of time. But it was great to read the summary of all of the work that has been done. It was a nice refresher and I enjoyed reading quotes that resonated with me personally. Other communities have a lot of things in common with the Vietnamese community. It’s very exciting to collaborate together, since we are all doing this work.  

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

The Provider’s Perspective on Hepatitis Delta: A Conversation with Ilan Weisberg, MD

Dr. Ilan Weisberg is a highly acclaimed gastroenterologist and hepatologist currently serving as the Chief of Gastroenterology and Hepatology at New York-Presbyterian Brooklyn Methodist Hospital. He shares the Hepatitis B Foundation’s enthusiasm for advocacy and education surrounding hepatitis B and D, and was eager to provide the perspective of a healthcare provider on the current state of hepatitis delta screening and management, as well as some common misconceptions.

A Shift in Provider Awareness and Knowledge

One of the first topics Dr. Weisberg spoke about was how unaware he was about hepatitis delta until recently. He discussed the ongoing issues with a general lack of knowledge about hepatitis delta in the United States, and how this is the most common reason for many of the current challenges seen today. When asked what led to his and other providers’ shift in knowledge, he credited the improvements with hepatitis C awareness and treatment with some of the shift, as well as the potential for new treatments for hepatitis B and D. “Every time there is a promise of a treatment or a cure or intervention, then I think it helps engender more enthusiasm for screening.”

Hepatitis Delta Prevalence and Screening Practices

Dr. Weisberg sees hundreds of patients who are living with hepatitis B virus (HBV). New York, and especially Brooklyn, have so many cultural communities coming from countries where hepatitis B is common. Hepatitis D is a much smaller percentage of his patient population. Dr. Weisberg was a co-author on a study that looked back through electronic medical records (EMRs) for all hepatitis B surface antigen positive (HbSAg+) patients at his former health system to identify how common hepatitis delta virus (HDV) testing and prevalence were. Across the entire health system only about 12% of HbSAg+ patients were tested for delta and among those individuals there was a 4% positive rate for HDV (Nathani et al., 2023).

One particularly concerning part of that study for Dr. Weisberg was the overall low rates of hepatitis delta screening. He notes that it is difficult to keep health care providers motivated to screen when the number of those with hepatitis delta is so low, and that creative solutions like automatic EMR suggestions may increase the likelihood of testing. About three years ago at his former clinic, Dr. Weisberg standardized a protocol for screening every existing and new patient living with hepatitis B for hepatitis delta at least once. This protocol is still being used in his current health system. “Even though the event rate is low, the clinical importance of finding these patients [is] very high” and he hopes that this approach will be widely adopted to more closely align with European Association for the Study of the Liver (EASL) recommendations compared to the current risk-based approach of the American Association for the Study of Liver Disease (AASLD)(EASL, 2023; Terrault et al., 2018). Discussions on changing these American recommendations have been in circulation and plans to update them should be realized in the near future.

Dr. Weisberg believes that one of the reasons for the low testing is that hepatitis delta is considered a “rare disease” in the United States. He notes that the major differences in the number of cases among different countries means that one study in a specific geographic area cannot be generalized to the entire global prevalence.  He hypothesizes that if there was true and accurate prevalence data across the globe, the number of cases would be higher than those estimated in the U.S.  and globally today. One of the challenges in providing accurate prevalence data is knowledge about appropriate testing, which Dr. Weisberg recalls encountering in his clinical career. When he arrived at his former health system, they were only testing for hepatitis delta antigen rather than the hepatitis delta antibody (anti-HDV), which is the appropriate initial test to perform. True prevalence rates are important for improving our understanding of who is affected by hepatitis delta, and with new therapeutics on the horizon, it is vital to identify patients who are hepatitis delta-positive so that they can participate in trials and be ready to receive treatments once approved.

Thoughts on Universal Reflex Testing

Dr. Weisberg mentioned that his current health system does not have the HDV test set up as a reflex test (automatic testing for HDV when one tests positive for HBV, using the same blood sample) straight from HbSAg+ to anti-HDV and from anti-HDV to confirmatory HDV RNA, but they are working on getting that established. “In a place like Brooklyn where we have enormous populations from hot spots of endemicity for delta, like Moldova and Mongolia, it might be very cost-effective, but in other parts of the country it may not be, and it is hard to have a universal strategy that is not universally cost-effective.” He also highlighted the need to be able to reliably check across databases to avoid repeated testing upon new emergency room visits, providers, etc.

Risk Factors for Hepatitis Delta

According to the AASLD, identified risk factors for hepatitis delta include persons born in regions with reported high HDV endemicity, persons who have ever injected drugs, men who have sex with men, individuals living with hepatitis C (HCV) or human immunodeficiency virus (HIV), persons with multiple sexual partners or history of sexually transmitted disease, and those with persistently elevated levels of the liver enzymes ALT and AST, despite low levels of HBV DNA. Based on Dr. Weisberg’s experience he has not found these risk factors to be entirely representative of his hepatitis delta patient population. The same study he conducted on hepatitis delta screening found that, by following the AASLD risk-based screening guidelines alone, about 18% of positive cases would have been missed. Of those positive cases, the patients tended to be younger and had significantly notable increase in liver disease progression and incidence of liver cancer. Dr. Weisberg encourages the testing of all hepatitis B-positive individuals to ensure the capture of all cases and linkage to appropriate care.

One major misconception among providers that Dr. Weisberg noted is that hepatitis delta is commonly referenced as a virus only seen in people living with HIV and people who use injection drugs (PWID). This translates to higher screening rates in those groups and leaves out a focus on those immigrant communities from highly endemic countries that can be very heavily affected by the virus.

Case Management Recommendations

Management of hepatitis delta patients requires a uniquely tailored approach for each case, but Dr. Weisberg outlined some of the general recommendations that he makes for his HDV+ patients. Since hepatitis D is so damaging to the liver, a main concern is keeping their liver as healthy as possible. This means reducing alcohol consumption to avoid developing alcohol-related liver disease and completing liver cancer surveillance (ongoing screening using non-invasive methods to detect early-stage hepatocellular carcinoma (HCC)). Dr. Weisberg recommends seeing your hepatologist once or twice a year and he personally checks patient labs and viral loads every six months, and transient elastography (FibroScans) every three years or so to check the stiffness and fat  changes in the liver. Other screening tools such as ultrasounds, alpha fetoprotein (AFP) markers, and Fibrosis-4 values are appropriate ways to stay updated on the liver health of all hepatitis delta-positive individuals. Most importantly, Dr. Weisberg stresses the need for a strong relationship between the hepatologist and the primary care provider in the long-term management of viral hepatitis patients, and a team-based approach with other providers in the clinical setting.

In terms of treatment options for hepatitis delta, the only currently available therapeutic is pegylated interferon alpha, which in Dr. Weisberg’s experience has not been effective in reducing his patients’ viral loads and tends to cause a lot of additional difficulties for his patients in their daily lives. He recommends careful consideration of which patients should be put on interferon treatment. In cases of contraindications such as diagnosis of autoimmune disease or severe risk of progressive disease, there is a possibility to appeal for compassionate use therapy for some treatments not yet fully approved in the United States. One such therapy is Hepcludex, the recently available treatment, which is presently only approved for prescription in Europe.

Finally, Dr. Weisberg’s management approach always involves the family of affected individuals, and discussions of how to keep transmission low for any who may be vulnerable to hepatitis B and D. One commonly cited reason for low delta screening rates for providers is “Why screen for people without a treatment?” Since hepatitis delta is highly transmissible, knowing one’s status allows the patient to be mindful about preventing exposure and infection of other household members, sexual partners, etc. Dr. Weisberg is a strong advocate for promoting hepatitis B vaccination in immigrant and adult populations (the vaccine also prevents hepatitis delta) and testing for the presence of hepatitis surface antibody (HbSAb) among close contacts of individuals living with hepatitis B and delta, to ensure low transmission rates.

The Promise of Future Treatments

“Every patient with [hepatitis] delta should be treated for [hepatitis] delta” but the major missing component is available treatments. Dr. Weisberg believes this to be the largest unmet need for his patients, but he emphasized hope for approval of treatments in the future. The availability of compassionate use therapy is a strong indicator for future approval since this was not always an option. Additionally, bulivertide (Hepcludex) is approved in the European Economic Area but is not yet approved by the Food and Drug Administration (FDA) in the United States. Dr. Weisberg explained that most information suggests that the delay in approval is more likely related to the need for reliable manufacturing and supply chain efficiency rather than a concern about the safety of the drug itself. (The FDA has not requested any further clinical trials, which is promising.) One common misconception in the provider community is that there will never be a cure for hepatitis B, but Dr. Weisberg remains confident in the progress being made towards both treatments for hepatitis D and a cure for hepatitis B.

Dr. Weisberg is one of many compassionate and knowledgeable physicians that manage people living with hepatitis B and D. If you need a provider, use our Physician Directory to find one near you!

References

European Association for the Study of the Liver (2023). EASL Clinical Practice Guidelines on hepatitis delta virus. Journal of hepatology, 79(2), 433–460. https://doi.org/10.1016/j.jhep.2023.05.001

Nathani, R., Leibowitz, R., Giri, D., Villarroel, C., Salman, S., Sehmbhi, M., Yoon, B. H., Dinani, A., & Weisberg, I. (2023). The Delta Delta: Gaps in screening and patient assessment for hepatitis D virus infection. Journal of viral hepatitis, 30(3), 195–200. https://doi.org/10.1111/jvh.13779

Terrault, N. A., Lok, A. S., McMahon, B. J., Chang, K., Hwang, J. P., Jonas, M. M., Brown, R. S., Bzowej, N., & Wong, J. B. (2018). Update on prevention, diagnosis, and treatment of chronic hepatitis B: AASLD 2018 hepatitis B guidance. Hepatology, 67(4), 1560–1599. https://doi.org/10.1002/hep.29800

World Health Organization: WHO. (2023, July 20). Hepatitis D. https://www.who.int/news-room/fact-sheets/detail/hepatitis-d

HBV, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Liver Health, Research

Highlighting the Relationship between Hepatitis B and Liver Cancer

Highlighting the Relationship between hepatitis B and Liver Cancer

October marks Liver Cancer Awareness Month, an initiative highlighting this significant, but under-prioritized public health concern. Unfortunately, people living with hepatitis B have greater risk of developing liver cancer, and this risk is even higher for people born in countries where hepatitis B is more prevalent (Department of Health and Human Services [HHS], 2014; Chayanupatkul et al., 2017). Because of this, the Hepatitis B Foundation (HBF) conducted a study among foreign-born communities in the U.S. who are heavily impacted by the hepatitis B virus (HBV) to assess awareness levels about the connection between HBV and liver cancer. HBF used the perspectives and ideas expressed during these focus groups to create culturally and linguistically tailored, community-focused awareness and educational materials, so that everyone has continuous access to user-friendly HBV and liver cancer information.

From April to September 2021, the HBF conducted focus groups with people from the Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. A total of 15 virtual focus groups took place, with 101 individuals providing their thoughts about what hepatitis B and liver cancer are, and insights into appropriate strategies to educate their greater communities on the connection between these two conditions. The resulting communications campaign aims to improve the public’s knowledge about the link between HBV and liver cancer, reduce hepatitis B- and liver cancer-related myths and misconceptions, and promote hepatitis B and liver cancer screening and early detection among Asian and Pacific Islander (API) and African and Caribbean immigrant communities. The ideas and experiences voiced by focus group participants also contributed to the development of informational liver cancer materials for community health educators to integrate into existing education programs for immigrant communities.

Summary of focus group findings:

All focus groups emphasized the need for educational materials to highlight the relationship between hepatitis B and liver cancer. Interestingly, people were more aware of liver cancer and its serious health consequences than they were of hepatitis B and how it is a leading cause of liver cancer. Many people had personal experience with liver cancer, having known family members, friends or other community members who have died from the disease. With this, participants believed that people will be more likely to practice healthy behaviors, like vaccination and routine screening, when they know that HBV can lead to liver cancer and know what behaviors can reduce their risk of liver cancer and death. When people learn about the benefits of vaccination (like full protection against HBV and reducing the risk of transmitting the virus to loved ones), and screening (keeping your liver healthy), and are provided with resources and tools to manage their health, they are empowered and are more likely to make healthy choices to reduce their risk of severe health outcomes.

When educating people about the connection between the two diseases, it is also important to address the widespread misconceptions about both hepatitis B and liver cancer, which contribute to shame and stigma surrounding each condition. Many focus group participants revealed that their communities believe that HBV is related exclusively to sexual promiscuity, injection drug use and poor hygiene, all of which lead to stigma against people living with hepatitis B (PLHB), who are believed to be “immoral” or “dirty.” These stigmatizing beliefs cause PLHB to become reluctant to seek care and treatment for the virus, and can discourage screening in the greater community because people do not want to be shamed by or isolated from their social circles. Additionally, participants discussed how their communities believe that liver cancer is only associated with alcohol and are unaware of the causal relationship between HBV and liver cancer. According to focus group participants, educational materials should include some information about how hepatitis B is transmitted and how it can lead to liver cancer if left untreated and unmanaged. One way to do this is by including the personal testimonials of PLHB and liver cancer in educational materials, who show the audience how they stay healthy and maintain a good quality of life while living with these diseases. As people see how one’s quality of life does not diminish, and learn from the stories of people living with hepatitis B or liver cancer, they may become more understanding of the diseases and supportive of their own community members who are living with them.

Focus group participants were also asked to identify communication strategies that would be acceptable for their community groups. As for in-person communication, educational sessions should take place in settings where people feel safe, including community-based organizations, religious spaces, and healthcare offices. These sessions, as emphasized by participants, should be facilitated by trusted messengers, like patient navigators, doctors, and faith leaders, or other people who have a shared culture with the audience. Demonstrating cultural respect during face-to-face communication is also of utmost importance. Certain communities emphasized that it is especially important to have gender-specific messengers when discussing topics like sexual transmission of hepatitis B (Taylor et al., 2013; Cudjoe et al., 2021). 

Educational campaigns should also be strategic when discussing community-specific risk, as it is important to discuss each community’s risk without placing blame on a specific group. Despite the fact that countries in the Asian-Pacific and sub-Saharan African regions have endemic levels of HBV and the highest global incidence rates of liver cancer (Zamor et al., 2017), many focus groups explained that their communities consider HBV and liver cancer to be Western diseases, since the conditions are often not discussed in home countries, and are therefore unaware of both the severity of the diseases and their personal risk. Focus group participants agreed that informational material can group highly impacted communities together when presenting prevalence rates and risk factors, so as to reduce shame associated with HBV and liver cancer of one group while increasing audience awareness of their risk (Parvanta & Bass, 2018). 

Experiences of Community Focus Group Facilitators

Community participation and leadership was of utmost importance in this project. Two focus group facilitators recounted their experiences of recruiting and conducting focus groups with their communities. The first was the leader of the Cantonese focus group.

Despite being nervous about how it would turn out, one facilitator spent time thinking about the project. They chose to conduct the focus group in Chinese (Cantonese), the “native language of the participants,” and hoped that communicating in Cantonese would increase participant engagement, especially when discussing their “lived experience of the disease.” 

“Prior to convening the Zoom meeting, I had provided a one-on-one orientation to each participant about the theme of the focus group and expectations. As a result, everyone was ready and able to fully participate, and speak openly at the meeting. It was a fruitful discussion among the five participants. Everyone brought up their perspectives and insights about stigma and health education strategies to the community. They had expressed a sense of fear and emotional distress when they were made aware of the relationship between hepatitis B and liver cancer. They raised lots of questions on hepatitis B transmission, testing and vaccination, and liver cancer and treatment, and were very interested to learn more about necessary lifestyle changes if they contracted chronic hepatitis B. 

At the end participants had requested a follow-up session to learn more about HBV and liver cancer.  They will be excited to know about the release of the newly developed Chinese-language educational materials on both diseases, which came together because of their contributions. I would suggest Hepatitis B Foundation and UC Davis to host an in-person workshop to present  the new education materials.  That would be a meaningful outreach and education to the local Chinese and Asian communities.”

Another facilitator shared their thoughts and insights regarding the focus group they conducted with their African immigrant community. They felt that being a facilitator for this study was an “enlightening experience,” especially as they uncovered their community’s healthcare awareness as it relates to hepatitis B and liver cancer. They continued to share:

“Running the focus group gave me valuable insights into the knowledge gaps and misconceptions surrounding HBV within the African immigrant population. Through open and honest discussions, we uncovered specific areas where education and awareness initiatives can have a significant impact. Many participants needed to understand the transmission, prevention, and available resources related to these diseases. Understanding these nuances is crucial in tailoring our educational materials effectively.

Regarding the study findings, it was evident that there is a pressing need for culturally sensitive educational resources. The unique challenges African immigrants face, including language barriers and cultural differences, highlight the importance of creating materials that resonate with our community members. Moreover, the findings emphasized the urgency of dispelling myths and stigmas associated with HBV and fostering a supportive environment for affected individuals and their families.

As for the materials produced for the campaign, I am genuinely impressed with the effort and attention to detail put into their creation. The content is informative and culturally relevant, making it relatable to our community. Using images, culturally familiar scenarios, and visuals ensures that these materials will significantly raise awareness about HBV in my community.

When disseminated effectively, these materials will empower African immigrants with the knowledge they need to protect themselves and their loved ones. By addressing the specific concerns and questions raised during our focus group sessions, these resources have the potential to bridge the information gap and promote proactive healthcare practices within our community.”

Conclusion

The overall goals of these materials are to facilitate improved hepatitis B and liver cancer awareness, increase testing and prevention behaviors, and reduce misconceptions about the two diseases to ultimately reduce HBV- and liver cancer-related death. Thanks to the insights and recommendations from the focus group participants, educational hepatitis B and liver cancer materials were created in a culturally sensitive and linguistically appropriate manner for a number of communities in the U.S. who are greatly impacted by the two diseases. To reach a broad audience, the materials will be available on multiple communication platforms and in multiple languages. This first part of the community-informed educational campaign can be found on the HBF’s Liver Cancer Connect website now. All materials will be fully uploaded and available to the public for further community education starting in February of 2024. Translated materials and messages tailored for audio and video formats will also be uploaded on a rolling basis. 

References

Chayanupatkul, M., Omino, R., Mittal, S., Kramer, J. R., Richardson, P., Thrift, A. P., El-Serag, H. B., & Kanwal, F. (2017). Hepatocellular carcinoma in the absence of cirrhosis in patients with chronic hepatitis B virus infection. Journal of Hepatology, 66(2), 355-362. https://doi.org/10.1016/j.jhep.2016.09.013

Cudjoe, J., Gallo, J.J., Sharps, P., Budhathoki, C., Roter, D., & Han, H-R. (2021). The role of sources and types of health information in shaping health literacy in cervical cancer screening among African immigrant women: A mixed-methods study. Health Literacy Research and Practice, 5(2), e96-e108. doi: 10.3928/24748307-20210322-01

Department of Health and Human Services. (2014). Action plan for the prevention, care, & treatment of viral hepatitis. Department of Health and Human Services.

Hong, Y.A., Juon, H.S., & Chou, W.Y.S. (2021). Social media apps used by immigrants in the United States: Challenges and opportunities for public health research and practice. mHealth, 7, 52. doi: 10.21037/mhealth-20-133

Hong, Y.A., Yee, S., Bagchi, P., Juon, H.S., Kim, S.C., & Le, D. (2022). Social media-based intervention to promote HBV screening and liver cancer prevention among Korean Americans: Results of a pilot study. Digital Health, 8, 20552076221076257. https://doi.org/10.1177/20552076221076257 

Joo, J.Y. (2014). Effectiveness of culturally tailored diabetes interventions for Asian immigrants to the United States: A systematic review. The Diabetes Educator, 40(5), 605-615. DOI: 10.1177/0145721714534994

Parvanta, C., & Bass, S. (2018). Health communication: Strategies and skills for a new era: strategies and skills for a new era. Jones & Bartlett Learning, LLC.

Porteny, T., Alegria, M., del Cueto, P., Fuentes, L., Lapatin Markle, S., NeMoyer, A., & Perez, G.K. (2020). Barriers and strategies for implementing community-based interventions with minority elders: Positive minds-strong bodies. Implementation Science Communications, 1, 41. doi: 10.1186/s43058-020-00034-4

Taylor, V.M., Bastani, R., Burke, N., Talbot, J., Sos, C., Liu, Q., Jackson, J.C., & Yasui, Y. (2013). Evaluation of a hepatitis B lay health worker intervention for Cambodian Americans. Journal of Community Health, 38(3), 546-553. doi: 10.1007/s10900-012-9649-6

Zamor, P. J., deLemos, A. S., & Russo, M. W. (2017). Viral hepatitis and hepatocellular carcinoma: Etiology and management. Journal of Gastrointestinal Oncology, 8(2), 229–242. https://doi.org/10.21037/jgo.2017.03.14

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

CHIPO Partner Highlight: Falcons Health Foundation of Accra, Ghana

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that was co-founded and is led by the Hepatitis B Foundation. CHIPO 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 spoke with Samuel Addai of the Falcons Health Foundation (FHF) based in Accra, Ghana. Samuel and his team continuously work to reduce the disease burden of viral hepatitis B and C throughout the country. Concerning hepatitis B specifically, Ghana is considered to be a highly endemic country, with an estimated hepatitis B prevalence of 12.3% to 14.4% (Efua et al., 2023). Samuel spoke with us about the barriers he and his team face battling viral hepatitis in Ghana, the strategies they use to overcome those challenges, his reason for doing this vital work and his hopes for the future.

 Could you please introduce yourself and your organization? 

 My name is Samuel Addai. I’m from Ghana. I was born and raised here. I am the founder and the leader of Falcons Health Foundation. I have about 15 [employees] of which five are public health officers. And then also three of them are lab technicians. And I have three national officers. I have two midwives as well, and two community health workers. 

 Could you tell me a little bit about what some of FHF’s programs are that specifically address hepatitis and other health concerns in Ghana’s communities? 

 We create public awareness about viral hepatitis B and C. We are also advocates for those with hepatitis. And then we also give treatment guidelines; and  do treatment services for people, as well as  free health screenings. If we didn’t do this, people would not be bold enough to come out. There is stigmatization of these diseases. We explain that hypertension and high blood sugar causes a lot of health conditions. We explain to them signs and symptoms of HIV and viral hepatitis. Once we are done with this explanation, if they allow us, then we start the screening.  

 What is the main geographic area in which FHF works? 

 Ghana has 16 regions. We started in the capital Accra. The capital is very big and we cannot go to every area. What we normally do is select some areas from which more complaints are coming. Especially Circle and then Madina and Ashaima [areas of Ghana]. We also go to part of the Ashanti region and to Bono region. We also go to the Northern part of Ghana, Tamale, and the Central part, Winneba. These are very big regions, so we only go to certain parts. The rest, we have yet to decide. 

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

 There is a lack of knowledge regarding viral hepatitis in the regions we service. We realized that the kind of health information that they recieive…[is] misinformation. And then also some people, due to cultural practices and their beliefs, do not seek treatment or testing. We did brief interviews and found that they believe that viral hepatitis and HIV are a result of juju, or spiritual forces, witches, and wizards. Some people also think that viral hepatitis and HIV diseases are a curse from their ancestors. Some of these issues, since they are due to a lack of knowledge and education, what we normally do is educate them and explain to them that witches and wizards are not the cause of these diseases. We try as much as we can to educate them. We explain to them the cause of these diseases. We do intensive education. Some people pretend not to believe us, but then they will come back later and say ‘check for me.’ Later they also laugh and talk about what they used to believe. Their response tells us that they are ready to take a test.   

Lack of sustained financing is our burden. We find it difficult in terms of the transport system. And also social media platforms, most of them give mistrust. They say that the viral hepatitis vaccine, the side effects are harmful to health. We normally try as much as we can to overcome the misinformation.  

 And then also, some equipment and materials for testing can be a problem. And if we are able to get a center, we could do testing permanently. Currently, we do not have a center that we can use as a permanent place for testing. When we go to the areas, maybe we can just sit in a place at the roadside or in classrooms, which is not very helpful. We also do tents at the park. We give our information to [people]. We use information centers in the area to announce that we are back at a particular place and that people should come to us. So if we are able to get a small facility at least, which could take maybe 100 patients, it would be very helpful for us. We are doing very difficult work here and no one is paying us. This is a sacrifice that we are taking on.  

 What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care?  

 The biggest barriers that we can encounter is the language barrier. In Ghana, the entire country is not speaking one language. English language is our official language. Those who do not attend schools, those who do not have any educational background find it difficult to understand English language. A day before our program, we invite some people in that particular area and we negotiate with them and ask if it is possible for them to translate their language to their people. And then also we do sign language, especially for disabled people. Another major barrier is stigmatization. Everybody feels shy and thinks “maybe this person knows me well” or “maybe this person knows my family.” Many people fear coming out in public to get tested. 

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

 What I love most and my favorite part here is the impact that we are making in communities. The testimonies that people are sharing to us. We really love this. At least people have received a good health impact in their lives. 

 Saving lives is my priority. Saving lives is what got me interested. I studied general medicine and then later also I studied public health. 

 Any other thoughts or ideas you’d like to share for improving health in Ghana, at both the community and national levels? 

 I believe that supporting these programs are very, very important so that we can reach out to many people because it seems that many people do not have this particular information yet. I believe that many people are not getting awareness. Information is very important, so if many people received this information, it would be helpful for the program. 

 We have a plan to develop an electronic data management system and surveillance system. Ghana does not currently have a hepatitis B or C elimination plan in place. We want to develop this so that it can help us keep data. 

 We want to reduce mother-to-child transmission by ensuring testing for pregnant women is free to all pregnant women. Before someone can get tested, they pay out of their pocket. Many people do not have the money to get the test, so we want to do that for them so that their health can be improved by knowing their status. 

 Let me add this too: Treatment is only available in teaching hospitals and this must be fully financed by the patient. Currently there is no public budget line for testing and treatment. We want to do free health screening so that this will help improve people’s health. 

 Do you have any final thoughts that you’d like to share? 

 What I can say is that me and my team, we have been able to acquire land and we want to be able to use it as a center. If we are able to get the necessary support, we can put up a small facility so that many people will know our exact location. In case there is any issue, they can visit our center. The problem here in Ghana, the government is not supportive at all. Even the government health facilities, they are having problems. They lack a lot. We don’t get support from the government. The people who received services from us support us. Later, they come to us and say “I’m okay, [my health is] fine now” and out of their joy, they support us. Other than that, we do not have support. 

 Thank you so much for taking the time to speak with me and for sharing more about the great work FHF has done and will continue into the future! 

Below are some photos that Samuel shared of his team doing their incredible work across Ghana.

Efua, S.-D. V., Adwoa, W. D., & Armah, D. (2023, January 20). Seroprevalence of hepatitis B virus infection and associated factors among health care workers in southern Ghana. IJID Regions. https://www.sciencedirect.com/science/article/pii/S2772707623000097#:~:text=In%20Ghana%2C%20the%20prevalence%20of,the%20general%20population%20%5B7%5D. 

HDV, Hepatitis D Advocacy, Hepatitis Delta (HDV), Research

Why Is Hepatitis Delta So Hard to Eliminate?

Forty-five years after Mario Rizzetto discovered the hepatitis D virus (also known as HDV or hepatitis delta), scientists and advocates met for the first ever Delta Cure Meeting to discuss new scientific trends and global advocacy efforts to eliminate this difficult-to-treat disease. This conference included topics ranging from HDV’s global prevalence to new diagnostic methods, and the need for specific and improved efforts to fight this virus.

During the Delta Cure Meeting, scientists called for new global strategies to find people living with HDV and have prompted the World Health Organization (WHO) to update their screening guidelines to include HDV tests for all people living with hepatitis B (people who are HBsAg-positive). 

Unfortunately, some barriers continue to stand in the way of making this call to action a reality. Dr. Meg Doherty, the Director of Global HIV, Hepatitis, and STI Programmes at the WHO, stated in a recent Healio article that the WHO does not have any prevention recommendations that are specific to HDV. However, the WHO is developing updated guidance for HDV testing, diagnosis, and treatment as a part of hepatitis B (HBV)-focused elimination efforts.

While some initial progress has been made, (such as the inclusion of HDV in the 2022-2030 Global Health Sector strategies, which aim to increase knowledge about infections like HIV and viral hepatitis to create effective responses to and advance elimination efforts for these diseases), there is a need to expand elimination strategies to include HDV more broadly. The lack of robust inclusion of HDV disregards people who are currently living with HBV and are at the highest risk of HDV exposure and acquisition. People who have been diagnosed with HDV are overlooked as linkage to appropriate care, diagnostics and treatments (which are important for people living with HDV to stay healthy) continues to be out of reach for many. One of the major challenges with HDV is also the lack of testing and surveillance to identify those individuals living with delta and to understand the true burden of the disease. 

The WHO affirms that HDV elimination efforts must start with raising awareness of the virus and increasing advocacy efforts. The scientists at the Delta Cure Meeting are doing just that. Here are some solutions that scientists and researchers have identified to address the challenges surrounding HDV elimination:

Barrier: Overly complicated screening guidelines present a major barrier to the elimination of HDV. It was only in March 2023 that the Centers for Disease Control and Prevention (CDC) introduced new guidelines recommending universal HBV screening for all adults in the United States. A recommendation for universal HDV reflex testing (automatic testing for HDV when one tests positive for HBV) for all individuals living with HBV has still not been implemented in the US. Additionally, the American Association for the Study of Liver Diseases (AASLD) has screening guidelines for HDV that are still risk-based, meaning that only people who have certain risk factors are recommended to be tested for HDV (high-risk groups include people who inject drugs and men who have sex with men, among others). Conversely, the European Association for the Study of the Liver (EASL) and the Asian-Pacific Association for the Study of the Liver (APASL) have moved away from risk-based screening. Both EASL and APASL recommend that providers perform the HDV antibody total (anti-HDV total) test in all HBsAg-positive patients to identify whether someone has recovered from or is currently infected with delta antibodies (Palom et al., 2022; Hepatitis B Foundation, 2023).

Risk-based screening burdens both providers and patients alike. As part of risk-based testing, providers must ask questions about risk factors that are not necessarily part of a regular health screening and must know which factors indicate a need for HDV testing. Providers are often hesitant to ask their patients these questions, as talking about risk factors can be uncomfortable and overwhelming. But if providers do not ask, then the patient must know their own risk factors and ask for the test themselves (which can be very uncomfortable). A guideline to test everyone who is positive for hepatitis B (HBsAg-positive) for HDV would eliminate this confusion and hesitation. In light of this barrier, and the fact that risk-based testing is not evidence-based, the Hepatitis B Foundation recommends that all people living with HBV ask their doctors about getting tested for hepatitis delta.

Call to Action: Introduce new screening guidelines, including screening all adults who are HBsAg-positive for HDV. As the US does not have universal HDV screening guidelines, people who test positive for the hepatitis B surface antigen (HBsAg) but do not fall into a “high risk” category are not recommended to be screened for HDV, so they may be living with hepatitis delta and unaware of their infection. This puts these individuals at a much higher risk of having unmanaged hepatitis delta and developing liver cirrhosis or other advanced liver diseases at a more rapid pace. HBV is also already significantly underdiagnosed in the US and, as Dr. Nancy Reau neatly summarized “If you aren’t thinking about B, you’re not thinking about D.” 

Barrier: HDV is not a nationally notifiable or reportable condition in the United States. This means that healthcare providers are not required to report cases of HDV to local and state health departments or to the CDC. Because of this, the actual number of people living with HDV in the US remains underestimated, and without accurate prevalence data, prioritization of this neglected disease is made all the more difficult. 

Call to Action: Make HDV a reportable and notifiable disease in the US and beyond. Dr. Doherty of the WHO agrees that efforts to identify the populations most at risk for HDV are needed in the fight for HDV elimination, and specifically mentions the need for epidemiological surveys (different study designs of various sizes to better understand the burden of disease). A new survey method was discussed at the 2022 Delta Cure Meeting by Dr. Saeed Hamid in his presentation, “Epidemiology of HDV: From Low to High Endemic Countries.” Dr. Hamid called for new national surveys to be distributed to people with advanced liver disease because this population is one in which HDV is most likely to be found. He believes this monitoring method can be used in any country to advance elimination efforts.

Barrier: There are currently no standard HDV diagnosis methods, which makes HDV elimination very difficult to achieve. Professor Maurizia Brunetto, who presented “Diagnosis of HDV: Clinical Virology and New HBV Biomarkers,” explained that there is likely an underestimation of HDV infection in general, due to misdiagnosis (when someone is incorrectly diagnosed) and challenges accessing the diagnostic testing for hepatitis delta. When Dr. Doherty of the WHO was asked about what needs to be done to improve HDV elimination efforts (specifically in the US), she mentioned improving diagnostic testing tools.

Call to Action: Simplify testing and introduce point-of-care testing to increase HDV detection and diagnosis. Prof. Brunetto explained that point-of-care testing (getting rapid results within 20 minutes of being tested rather than waiting for up to 48 hours for results of a traditional blood test) can improve overall HDV diagnostics around the world. She believes it is especially important to introduce point-of-care testing in countries with less developed medical infrastructure. Having this point-of-care testing method will be easier to maintain and can identify people living with HDV earlier and link them to treatment before their disease becomes more severe. Dr. Stephen Urban, who led the discovery and creation of the first ever drug for HDV (bulevirtide), has been developing a point-of-care test to find delta antibodies from one single drop of blood. While only in the experimental phase, Dr. Urban and colleagues have published two journal articles that provide evidence for the test’s potential effectiveness in identifying people living with HDV (Lempp et al., 2021). While still more than two years away from using this method at a larger scale, Dr. Urban believes that this method can lead to faster HDV diagnostics.

As new HBV screening guidelines are introduced and new diagnostic tools are being developed, we have to advocate for universal HDV screening in individuals with hepatitis B by raising public awareness of the importance of screening and raising the voices of people who are living with HDV around the world. 

References

American Association for the Study of Liver Diseases [AASLD]. (2021, November). Hepatitis d (delta) at AASLD 2021.  https://www.natap.org/2021/AASLD/AASLD_136.htm 

Centers for Disease Control and Prevention [CDC]. (n.d.). Interpretation of hepatitis B serologic test results [Fact Sheet]. U.S. Department of Health & Human Services. https://www.cdc.gov/hepatitis/hbv/pdfs/serologicchartv8.pdf 

CDC. (2022). Nationally notifiable diseases. U.S. Department of Health & Human Services. https://www.cdc.gov/healthywater/statistics/surveillance/notifiable.html 

CDC. (2023, March 10). Screening and testing for hepatitis B virus infection: CDC recommendations — United States, 2023. MMWR | Recommendations and Reports, 72(1);1–25. https://www.cdc.gov/mmwr/volumes/72/rr/rr7201a1.htm?s_cid=rr7201a1_w 

Delta Cure. (2022, October). Program. https://www.deltacure2022.com/pages/program/index.php 

Delta Cure. (2022, October). Poster Exhibition. https://www.deltacure2022.com/pages/posterExhibition/index.php 

European Association for the Study of the Liver. (2017, April 17). EASL 2017 clinical practice guidelines on the management of hepatitis B virus infection. Journal of Hepatology, Clinical Practice Guidelines, 67(2), P370-398. DOI: https://doi.org/10.1016/j.jhep.2017.03.021

Hepatitis B Foundation [HBF]. (2023). Testing and diagnosis. https://www.hepb.org/research-and-programs/hepdeltaconnect/testing-and-diagnosis/ 

HBF (2023). Treatment. https://www.hepb.org/research-and-programs/hepdeltaconnect/treatment/ 

Lempp, F. A., Roggenbach, I., Nkongolo, S., Sakin, V., Schlund, F., Schnitzler, P., Wedemeyer, H., Le Gal, F., Gordien, E., Yurdaydin, C., & Urban, S. (2021). A Rapid point-of-care test for the serodiagnosis of hepatitis delta virus infection. Viruses, 13(12), 2371. https://doi.org/10.3390/v13122371 

Michael, E. (2022, October 31). Q&A: Expert discusses current state of hepatitis D, challenges in elimination efforts. Healio. https://www.healio.com/news/hepatology/20221031/qa-expert-discusses-current-state-of-hepatitis-d-challenges-in-elimination-efforts 

Palom, A., Rando-Segura, A., Vico, J., Pacin, B., Vargas, E., Barreira-Diaz, A., Rodriguez-Frias, F., Riveiro-Barciela, M., & Esteban, R. (2022, October). Implementation of anti-HDV reflex testing among HBsAg-positive individuals increases testing for hepatitis D. Journal of Hepatology, 4(10), 100547. https://doi.org/10.1016/j.jhepr.2022.100547 

Sarin, S. K., Kumar, M., Lau, G. K., Abbas, Z., Chan, H. L., Chen, C. J., Chen, D. S., Chen, H. L., Chen, P. J., Chien, R. N., Dokmeci, A. K., Gane, E., Hou, J. L., Jafri, W., Jia, J., Kim, J. H., Lai, C. L., Lee, H. C., Lim, S. G., Liu, C. J., … Kao, J. H. (2016). Asian-Pacific clinical practice guidelines on the management of hepatitis B: A 2015 update. Hepatology International, 10(1), 1–98. https://doi.org/10.1007/s12072-015-9675-4

TheBMJ. (n.d.). Chapter 5. Planning and conducting a survey. https://www.bmj.com/about-bmj/resources-readers/publications/epidemiology-uninitiated/5-planning-and-conducting-survey

World Health Organization. (2022, July 18). Global health sector strategies on, respectively, HIV, viral hepatitis and sexually transmitted infections for the period 2022-2030. https://www.who.int/publications/i/item/9789240053779 

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!

Hepatitis B Prevention

Reflections from Hep B Free Phildelphia’s HBV Screening Event – CHOP site

Last week ended with an exciting city-wide hepatitis B screening event in downtown Philadelphia.  This event was sponsored by the Hepatitis B Foundation and Hep B Free Philly as part of the Hep B Free Philadelphia campaign. Hospitals included Hahnemann University Hospital, Thomas Jefferson University, Children’s Hospital of Philadelphia (CHOP), and Albert Einstein Medical Center.  Naturally each site was a little different and had their unique challenges. Throughout the four sights there were Hepatitis B Foundation and Hep B Free Philly volunteers, and 100 college-student volunteers. Student volunteers were a mix of pre-med and medical students, public health students, tutors in Chinese, Vietnamese, Korean, Spanish and French, and students interested in doing community out-reach. Twenty community –based organizations were also involved in order to reach out to high risk communities throughout the city of Philadelphia.  During this event, 200 at-risk participants were screened for hepatitis B. Those participants that do not have HBV will be invited to receive their free HBV vaccine.  This info will arrive in the mail with their test results.  Those with HBV will be provided with a linkage to care.

I thoroughly enjoyed my participation at the CHOP location. Although I was not involved in the planning and set-up process, it was clear that the logistics involved in making this multi-screening event come to fruition was extensive.  Testing sites needed to be secured. Community out-reach needed to be done long in advance in order to reach out to high risk communities. Supplies were purchased and carted (via a red-wagon at the CHOP site!) to the various sites. Phlebotomists were hired for the day. Student volunteers were organized. At CHOP, our French translators were essential in making the screening event work.  It was great to see the students take an active part in the event. Some went off campus and distributed flyers. Others manned the give-away desk.  A number of volunteers helped patients with paper work and translations, while a number of students directed and maintained the flow of traffic from one station to the next.  All volunteers worked to make the operation run smoothly.

During the CHOP screening event, participants received their paper-work and went into the auditorium and answered screening questions, signed consent forms, and filled out their self-addressed envelope for their test-results.  Paper work was reviewed by volunteers for signatures and accuracy, and appropriate labels were placed on paper work and tubes by Chari and Jessie – a very tedious process. One small tube of blood was drawn by highly qualified phlebotomists.  Since we were at CHOP, our expertise included pediatric phlebotomists and smaller, pediatric tubes, and tiny needles for kids.  From experience I can tell you this is a real bonus! We did not have many small children screened at our site, but we were happy to accommodate those little ones that were screened.  Each child also got a sticker, a band-aid and a coloring book and crayons following their screening or the screening of their parents.  Water and crackers were available for all that were screened, and each family got a “B A Hero” tote bag.

Following the blood draw, participants were invited back into the auditorium to learn more about hepatitis B, whether it was to address specific questions or in small or larger group presentations.  This is where I spent most of my time.  The majority of participants screened at CHOP were African immigrants. Most were French speaking, so the need for a French translator was essential to our outreach mission.

In the past I have enjoyed providing HBV training in China, but this is my first time working with the African Immigrant population.  It’s always a pleasure to work with different ethnic communities.  In Philadelphia, the prevalence numbers of those with HBV are between 8% and 13% in the African Immigrant community, so getting the HBV basics across is very important in this community. One man was quite empowered by what he learned and asked if he could take some of our HBV information sheets home so he could distribute them to friends and neighbors. We also had a religious leader come for screening at the very end of the event. Hopefully he will bring his message back to his faith community, and it will encourage others to be screened at another time. It doesn’t get any better than that!

Personally, I found the screening event a very rewarding experience. Hep B Free Philadelphia is committed to continutedl outreach and screening in the Philadelphia area for those that missed last week’s event and would like to be screened. Please check it out if you are local and interested in volunteering.  If you’re not local, you might find a Hep B Free organization in your own city.  Get involved!  B A Hero! Save lives! Stop Hepatitis B!

Visit: www.bfreephilly.org

Check out: Reflections from the 10/22 Screening  Event at Thomas Jefferson University

Baruch S. Blumberg Institute