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

CHIPO Partner Highlight: Falcons Health Foundation of Accra, Ghana

July 12, 2023 hepbtalk

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 Avocacy, Hepatitis Delta (HDV), Research

Why Is Hepatitis Delta So Hard to Eliminate?

March 15, 2023 hepbtalk

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.

February 8, 2023 hepbtalk

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

Could you please introduce yourself and your organization?

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

Can you tell me about HBI-DC?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you!

300 Million Reasons, About Hepatitis B, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

Ignore it till it goes away! A hepatitis B vignette.

October 5, 2022 hepbtalk

The Scenario:

Woman is sick on couch, her husband is giving her an ice pack

Aroha Kawai just started a new job as a medical interpreter for Pacific Islander patients diagnosed with COVID-19. As a critical source of communication for the providers and the patients, she is often called to work night and weekend shifts. Aroha had a difficult conversation with the family members of a critical COVID-19 patient on whether they should discontinue ventilation support for the ailing grandmother. During this time, Aroha’s family noticed changes in her behavior. She stopped eating regularly, lost weight and repeatedly cancelled plans to go out. Aroha dismissed her family’s concerns as physical manifestations of the emotional burnout from work.

People are at a free hepatitis B screening event in a park.

Recently she attended a health fair hosted by her department at work. She approached a viral hepatitis screening booth and decided to get tested for hepatitis B. The following week, she received her results in the mail. Her results indicated that she had tested positive for hepatitis B. She shared her diagnosis with her mother who informed her that her grandfather died from liver cancer.

Inside a doctor's office. A doctor is showing information about the liver. A woman with hepatitis B sits with her husband.

Aroha then followed up with her primary care doctor. She discovered that she had chronic hepatitis B. Even though the ultrasound did not show any evidence of cirrhosis, her doctor ordered an imaging test (U/S, CT, MRI) to screen for liver cancer. Unfortunately, Aroha was diagnosed with early-stage liver cancer.

Inside a hospital room. A man and child visit a woman with hepatitis B in a hospital bed.

Fortunately, the cancer had not spread and did not infect nearby blood vessels. Her doctor suggested a partial hepatectomy to remove the tumor safely as the rest of the liver was still healthy. Aroha decided to adhere to her doctor’s advice and successfully underwent the surgery. She has taken some time off from work to focus on recuperating from the surgery and spending time with loved ones.

The Challenge:

Dismissal of Symptoms:
- Aroha initially ignored the physical symptoms of liver cancer. It is true that signs and symptoms may not necessarily be present.
- However, it is crucial to take care of one’s health and never ignore warning signs. Fatigue, unintended weight loss, and loss of appetite are a few of the symptoms of liver cancer.
Cancer without Cirrhosis:
- It is possible to get liver cancer without cirrhosis. Therefore, it is always important to screen for liver cancer if you have chronic hepatitis B infection.
Importance of Screening
- Liver cancer screening is a highly effective method to detect malignant tumors and prevent cancer for those living with hepatitis B.
- Early intervention increases the survival rate significantly and stops the cancer from spreading to other vital organs.

What can you do?

Get Help!
- If you experience pain or discomfort of any kind, it is important to reach out for help. Set up an appointment with your doctor and discuss your concerns.
- There is a good chance you might be misunderstanding an important health issue for side effects of stress or emotional burnout. Do not ignore your symptoms or feelings.
Get Screened!
- Hepatitis B is a leading cause of liver cancer, most of the time it is because someone did not know they were infected with hepatitis B or were not managing their hepatitis B infection.
- Everyone should be tested for hepatitis B to know their status. Ask your doctor for a hepatitis B screening today.
Stay on track!
- If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through liver cancer surveillance regularly. Discuss with your doctor if you are at high-risk and how often you should get screened.
- It is recommended to get an ultrasound with blood work every 6 months to check how the virus is impacting the liver. This includes the alpha-fetoprotein (AFP) blood test to measure the levels of AFP in your blood as it may indicate the presence of cancer cells in your liver. This can also help detect any scarring or tumors.

Don't ignore it until it goes away. Get help. Get screened for hepatitis B. Stay on track.

Resources and Acknowledgements:

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Research, Liver, Research

Reactivation with Hepatitis B: Understanding Risk Factors and Prevention Strategies

September 14, 2022 hepbtalk

Understanding the hepatitis B virus and the panel of blood tests needed to determine infection or immunity can be a stressful and challenging task. In simplest terms, “hepatitis” means liver inflammation and the hepatitis B virus can ultimately cause liver inflammation. The liver is an important organ in the human body and responsible for the removal of toxins and regulation of digestion (learn more about the function of the liver here). The hepatitis B virus can infect and disrupt critical functions of the liver in supporting your overall health.

How the hepatitis B virus works

In the case of the hepatitis B virus, the host is the liver cell. As the virus makes more copies of itself, the liver may become damaged, and sometimes it is unable to carry out its essential tasks to regulate metabolism, nutrients, and digestion. It is best to prevent hepatitis B infections when we can – and since antibodies are the best defense against the virus, the hepatitis B vaccine can be used to signals the body to make antibodies to fight the virus. The hepatitis B vaccine provides lifelong protection from the virus. However, this is only possible before infection with the virus. If somebody is already infected with the virus, antiviral therapy is used to control the virus and prevent liver damage – antiviral medications disrupt the life cycle of the virus by disabling viral receptors from binding to liver cells.

Blood test panel to diagnose hepatitis B:

The only way to tell someone’s hepatitis B status is through a panel of blood tests – the tests are all done at one time, and only one small tube of blood is needed. These tests are not included in routine testing, so it is important to ask your doctor to test you for hepatitis B or try to find a free screening event near you (http://www.hepbunited.org/). The panel consists of the following tests to determine your hepatitis B status:

HBsAg:
- This tests for the hepatitis B surface antigen in someone’s blood. The surface antigen is the protein that surrounds the virus and protects it from attack by the host. A positive surface antigen test indicates that the virus is present in the body. A “positive” or “reactive” result for HBsAg indicates that someone is infected with hepatitis B and can transmit the virus to others.

HBsAb
- This tests for the hepatitis B surface antibody in someone’s blood. The surface antibodies are produced by the immune system and can fight off the virus by attaching to the surface antigen protein. This test can detect the presence of these antibodies. Ideally this test will be ordered quantitatively (numerically). A “positive” surface antibody test (meaning numbers reading >10 IU/mL) means that a person has protection against the hepatitis B virus (either by vaccine or from a past exposure).

HBcAb (total)
- This is known as the hepatitis B core antibody test. The core antibody is produced by the immune system after infection with the virus. This test indicates an existing or past infection of the hepatitis B virus.

To learn more about interpreting your test results, click here.

Important things to know about Hepatitis B Core Antibody (HBcAb)

Someone who has markers of past infection, particularly hepatitis B core antibody, can be at risk for hepatitis B reactivation. Reactivation can be triggered by immunosuppressive therapies and cause significant life-threatening challenges. If you test HBcAb+, please talk to your doctor about what that means, and make sure you notify all future health care providers.

How is reactivation with HBV defined?

Reactivation is defined as the sudden increase or reappearance of HBV (hepatitis B virus) DNA. When the virus invades the cell, it forms a covalently closed circular DNA (cccDNA) in the nucleus of infected cells referred to as hepatocytes. Because cccDNA is resistant to antiviral treatments, it is never removed from the cells. Therefore, even after recovery from a past infection, the cccDNA is present and may reactivate. It is not clearly understood why this may happen, but certain factors may increase the risk for reactivation.

To learn more about the core, click here.

What puts one at risk for reactivation?

Virologic factors such as high baseline HBV DNA, hepatitis B envelope antigen positivity (HBeAg), and chronic hepatitis B infection that persists for more than 6 months.
- Detectable HBV DNA levels and detectable levels of HBsAG can increase the risk for HBRr (reactivation)
- Testing positive for HBeAg also increases the risk for reactivation
Co-infection with other viruses such as hepatitis C or hepatitis Delta
Older age
Male sex
Cirrhosis
An underlying condition requiring immunosuppressive therapies (rheumatoid arthritis, lymphoma, or solid tumors)
- Certain medications can increase the likelihood of reactivation by more than 10%.
- B-cell depleting agents such as rituximab, ofatumumab, doxorubicin, epirubicin, moderate or high-dose corticosteroid therapy lasting more than 4 weeks.

How to prevent reactivation of hepatitis B

Hepatitis B reactivation is a serious condition that can lead to health complications, Reactivation is avoidable if at-risk individuals are identified through screening. Current guidelines recommend that individuals at the highest risk (those receiving B-cell depleting therapies and cytotoxic regimens) should receive antiviral therapies as prophylaxis before beginning immunosuppressive therapy. These antiviral therapies should also be continued well beyond stopping the immunosuppressive therapies. Be sure to talk to your doctor to be sure you are not at risk for reactivation.

References

Hepatitis b virus reactivation: Risk factors and current management strategies.

Reactivation of hepatitis B virus: A review of Clinical Guidelines.

https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/cld.883

https://www.hepb.org/prevention-and-diagnosis/diagnosis/understanding-your-test-results/

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

CHIPO Partner Highlight: Great Lakes Peace Centre

April 13, 2022 hepbtalk

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!

Hepatitis B Diagnosis & Monitoring, Liver Cancer

Fighting the Doom and Gloom: Screening Saves Lives!

December 21, 2018 hepbtalk 1 Comment

By Anu Hosangadi

Liver Cancer Connect’s “Fighting the Doom and Gloom” series is highlighting some of the advances in prevention, screening, and treatment that are helping to increase survival among people with liver cancer. Previously, we talked about how prevention works. Now we’ll explain how screening and surveillance save lives.
Continue reading "Fighting the Doom and Gloom: Screening Saves Lives!" →

Hepatitis B Treatment, Liver Cancer

Fighting the Doom and Gloom: It Takes a Team

December 20, 2018 hepbtalk 7 Comments

By Anu Hosangadi

People generally think liver cancer is non-treatable and non-curable. But that perception needs to change. Diagnosis and treatment of liver cancer have improved so much in the past 20 years that it can be cured if caught early and managed by an experienced health care team. Liver Cancer Connect’s “Fighting the Doom and Gloom” series explains how the right treatment plan and teamwork offer the best chances for a cure. Continue reading "Fighting the Doom and Gloom: It Takes a Team" →

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring

Finding the Missing Millions in Ghana

July 4, 2018 hepbtalk

Theobald Owusu-Ansah, President of the Hepatitis Foundation of Ghana and Hepatitis Coalition of Ghana and Guest Blogger, shares his efforts to eliminate hepatitis B in Ghana.

Viral Hepatitis is very common in Ghana, but awareness and testing has remained low. The Hepatitis Foundation of Ghana is working hard to address these gaps. Our mission is to eliminate viral hepatitis and improve the quality of life for those living with chronic hepatitis B and C in Ghana. We have a robust viral hepatitis community screening and awareness program. Through this program, we are working to reduce hepatitis B and C transmission among people in Agona, a farming community in the Nzema East Municipality of the Western region, Ketu South of the Volta Region, Kumasi in the Ashanti Region and Sekondi Komfoase and Takoradi in the Western; and also raise awareness on viral hepatitis infection, reducing stigma and discrimination through free screening, vaccination and education activities. Since this program started, we have made great progress towards these goals! Read on to learn about our most recent successes:

EVENT AT AGONA ON 22^ND DECEMBER, 2017

The Hepatitis Foundation of Ghana held a free hepatitis B screening, education and community gathering in Agona, a farming community in the Nzema East Municipality of the Western region A total of 101 persons were screened for hepatitis B. In all, 6 people tested positive for hepatitis B. Those who tested positive were counselled and referred to the district hospital for proper care and treatment.

EVENT AT KETU SOUTH ON 23^RD DECEMBER, 2017

Hepatitis B free screening and education were held at Ketu South, a community in the Volta region. A total of 244 persons were screened for hepatitis B. In all, 6 people tested positive. They were counselled and referred to the district hospital for proper care and treatment.

There have been some deaths reported within the community as a result of viral hepatitis according to the people in the community. Interestingly, a majority of the people attributed them to some form of spiritual or traditional mishaps. This was due to the lack of awareness on the risks of viral hepatitis. To help overcome these myths, hepatitis educational materials such as pamphlets and stickers were delivered to the community.

EVENT WITH VOLTIC GHANA LTD IN KUMASI ON 1^st MARCH, 2018.

VENUE: KNUST CAMPUS.

We worked with the Zoom Lion division of the Voltic Ghana Ltd, providing free hepatitis B and C testing.

Those who tested negative were provided with the first two doses of the hepatitis B vaccine. They were also educated and encouraged to spread the knowledge they had received. The people expressed their appreciation for the gesture at the end of the program and promised to get their last dose of hepatitis B vaccine!

EVENT AT SEKONDI KOMFOASE AND TAKORADI ON THE 25^TH TO 26^TH MAY, 2018

This special event began with a health walk through the streets in the Sekondi Komfoase area and followed with a hepatitis health talk and screening. Most of the people were afraid to come and do the hepatitis B and C tests because of some common perceptions on the radio and TV. I was able to share my family story with them, and that helped some of them come forward to do the test. The screening continued the next day at Home Church in Takoradi. Overcoming misperceptions about hepatitis B is very challenging – but we were able to screen179 persons, and are following up with all of those who tested positive.

There is a lot of work still to be done in Ghana, but we will keep working to change knowledge, overcome challenges and get people tested, vaccinated and treated!

Thank you to Theobald for serving as our guest blogger this week! If you would like more information from Theobald Owusu-Ansah or the Hepatitis Foundation of Ghana, please visit their website or contact them here.

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver Cancer, Living with Hepatitis B

Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second

May 4, 2016 hepbtalk 2 Comments

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.

By Christine Kukka

In 1914, the United States designated the second Sunday in May as “Mothers’ Day.” Its founder, Anna Jarvis, hoped the holiday would focus on her own mother’s work promoting peace and public health. Years later, Jarvis protested loudly when the holiday became better known for sentimentality and greeting card sales.

Our nation often loses sight of a holiday’s original intent, but this Mother’s Day we can bring back the goal of preserving public health, especially where it concerns mothers and infectious diseases.

Decades ago, researchers developed one of the most extraordinary life-saving vaccines–hepatitis B immunization. It saves lives in two ways: It protects children and adults from infection and it breaks the vicious cycle of mother-to-child infection. A baby born to a hepatitis B-infected almost always becomes infected. The vaccine, administered within hours of birth, breaks that cycle.

When the vaccine debuted in the late 1970s and early 1980s, most people with chronic hepatitis B had been infected at birth. When newborns and children are infected, their immune systems don’t recognize or attack the virus and the infection can continue indefinitely.

To stop this infection cycle, today all pregnant women are screened for hepatitis B. Babies born to infected women are immediately vaccinated and treated with HBIG (hepatitis B antibodies). This public health initiative has been extremely successful in dramatically reducing hepatitis B. However, the campaign’s focus has been primarily on newborns and the hepatitis B-infected mothers were often forgotten. Though hepatitis B infections had been identified, the infected mothers were often lost to follow-up, and this neglect continues today. Continue reading "Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second" →