Hep B Blog

Category Archives: Hepatitis B Treatment

Podcast Recap: Current Treatments in Development for Hepatitis B with Dr. John Tavis

 

 

 

 

 

 

 

 

 

 

 

 

In a recent B Heppy episode, Dr. John Tavis, a molecular microbiologist at St. Louis University School of Medicine, shared updates on curative therapies for hepatitis B along with insights on how treatments for hepatitis B are researched and approved for use. 

Hepatitis B is a virus that can cause serious liver disease such as liver cancer or liver failure if undiagnosed, unmanaged or without proper intervention and treatment. While there is no cure for hepatitis B at this time, there are treatment options available to manage the virus. Research to find an optimal and functional cure for hepatitis B is ongoing and clinical trials have been very successful in advancing research pertaining to the cure.  

In some experimental studies conducted around the globe, 30% to 40% of patients have achieved functional cure. In smaller studies, approximately 50% of patients have obtained functional cure. However, research on the cure and the progression of these clinical interventions are still ongoing. While the future looks promising for a functional cure for hepatitis B, existing treatments should not be undermined or overlooked as they provide effective protection from serious liver disease such as cirrhosis or liver cancer.  

There are key terms that are important to understand related to drug development and the hepatitis B space. Below we describe complete, functional and partial cure definitions according to researchers.  

Complete, Functional, and Partial Cure 

Complete Cure: Elimination of all traces of hepatitis B including loss of surface antigen and HBV DNA. 

Functional Cure: the loss of hepatitis B surface antigen and undetectable HBV DNA levels, although trace amounts of HBV DNA may persist in the liver.  

Partial Cure: A stable suppression of the virus with undetectable HBV DNA levels. 

The progress on the cure: 

Current progress and research indicate that a combination of drugs will provide the best outcome as it is not likely that only one drug will achieve a functional cure for hepatitis B at this time. There are different types of drugs that are being studied and each treatment focus on a different aspect of the lifecycle of the virus to prevent replication and growth.  

Some of the current options being studied for hepatitis B treatment include: 

Antisense RNA and SiRNA: These drugs work by suppressing and destroying the viral messenger RNA, which is crucial to make proteins and replicate HBV DNA. Current drugs that use this mechanism to target the virus include Bepirovirsen. Clinical trials have shown effective reduction in HBV DNA and viral proteins.  

Suppressing and destroying the viral RNA (destroys proteins—RNA makes proteins,  

CAMs (capsid assembly modifiers): These drugs work by disrupting the formation of capsids. Capsids provide a protective space for the genetic material of the virus to make sure it is able to transfer to the host cell without any complications. By disrupting the formation of the capsids, the virus is unable to replicate itself as the genetic material gets destroyed during the process.  

NAPs (Nucleic Acid Polymers): These drugs work by blocking secretion of the viral surface antigen outside of the cells so the virus is unable to spread to other cells. In the process, the surface antigen drops in the bloodstream and the immune system is alerted to attack the virus.  

Nucleotide Analogues: These drugs are the first-line treatments for hepatitis B. Antiviral treatments like entecavir and tenofovir are incredibly effective in suppressing HBV viremia and preventing progression of the virus from becoming cancerous. Although they are not considered functional cure, these drugs have low toxicity and are effective in treating people living with hepatitis B.  

 

To stay updated on developments in hepatitis B research, check out our Drug Watch page: https://www.hepb.org/treatment-and-management/drug-watch-2/ 

To listen to the full episode on our podcast, B Heppy, click here. https://bheppy.buzzsprout.com/1729790/13238616-current-treatments-in-development-for-hepatitis-b 

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. 

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

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!

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

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:
  1. 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. 
  2. 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. 
  3. 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?
  1. 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.  
  2. 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.  
  3. 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:
  1. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/signs-symptoms.html 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html 
  3. https://www.hepb.org/research-and-programs/liver/prevention-of-liver-cancer/ 

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

Around the world, people consider the use of herbal remedies or supplements as a natural treatment for hepatitis B and/or D infection. These natural remedies have historically been advertised to boost the immune system and improve liver health. Herbal remedies or supplements are described as products made from botanicals or plants used to treat diseases and maintain health. They can be produced in a variety of forms including liquid extracts, teas, tablets/capsules, bath salts, oils, and ointments4.

Why do people choose to use herbal remedies?

The use of these products over time has social-cultural influences related to the distrust of and unfamiliarity with western medicine for management of hepatitis B or D infection. While herbal remedies have been used widely across cultures and contexts, patterns of racism, medical mistreatment, and inadequate delivery of care in western medicine have influenced the present state of treatment practices. In response to these barriers to sensitive and effective health care delivery, many groups such as Hmong and African communities often rely on herbal remedies and supplements to treat medical conditions and ease suffering.

Silymarin, milk thistle, and Kampo medicine

The distrust of western medicine has contributed to more widespread use of supplements such as silymarin (milk thistle) and Kampo medicine, as alternatives to manage hepatitis B or D infection. Many people believe that Silymarin can improve liver health through its antioxidant and free radical-fighting properties. Traditional Kampo medicine has been used for over 2,000 years to treat a variety of diseases including hepatitis B. One herbal treatment that is frequently used is bupleurum which many people believe can protect the liver or heal liver damage. Despite possible liver health benefits, neither supplement is a treatment for hepatitis B or D and may sometimes cause further harm to the liver4. It is important to note that there is presently no cure for hepatitis B.

False claims and bad interactions

Additionally, several alternative medicine companies often make false claims and testimonials to convince people to purchase expensive alternative treatments with false promises that are not based on scientific evidence. Herbal remedies and supplements may also interact with certain medications prescribed for those with hepatitis B and D, so it is important to seek the advice of a health care professional before use of any of these products3,4.

Strides in western health care

The long-standing hesitancy to participate in western health care is well-reasoned and firmly rooted in past wrongdoing on the part of often fundamentally racist institutions. While the western health care system remains far from perfect, it is important to remember that many strides continue to be made to correct the misdeeds of the past, and conversations around health equity and the social determinants of health (including racism) are becoming more and more common. Meanwhile, research has found that beliefs and misconceptions around western medicine can delay care and increase morbidity rates of hepatitis B in high-risk communities2.

It is vital for those living with hepatitis B or D to stay informed with scientific knowledge about supplements and herbal treatments to ensure these products are effective and safe in their daily life. The coordination of hepatitis B and D care by providers must do better to support those impacted by the viruses, in a way that is culturally sensitive and not dismissive of the harm that has been inflicted on communities of color and immigrant communities, who are more likely to be affected by hepatitis B and D1.  Health care professionals and other service providers must continually work to improve their cultural humility. In addition, health care institutions practicing western medicine must work harder to ensure care is equitable and safe, and to center the voices, stories, and insights of community members in their work to repair the impacts of structural racism and medical mistreatment that have caused such deep distrust in western medical treatments.

To learn more about effective hepatitis B and D medications, check out our Drug Watch page!

Disclaimer: Herbal products are not U.S. FDA-approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

References

  1. El-Serag, H., McGlynn, K. A., Graham, G. N., So, S., Howell, C. D., Fang, T., … & Thiel, T. K. (2010). Achieving health equity to eliminate racial, ethnic, and socioeconomic disparities in HBV-and HCV-associated liver disease. The Journal of Family Practice, 59(4 Suppl), S37.
  2. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., … & Khalili, M. (2021). Patient knowledge, beliefs and barriers to hepatitis B Care: results of a multicenter, multiethnic patient survey. Digestive diseases and sciences, 66(2), 434-441.
  3. National Center for Complementary and Integrative Health website. Using dietary supplements wisely. (2019). Using dietary supplements wisely. https://www.nccih.nih.gov/health/using-dietary-supplements-wisely.
  4. US Food and Drug Administration. (2017). Information for consumers on using dietary supplements. https://www.fda.gov/food/dietary-supplements/information-consumers-using-dietary-supplements.

Accessing Hepatitis B Treatment

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

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

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

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

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

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

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

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

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

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

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

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

 

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Web Annex 1. Key data at a glance. In: Global progress report on HIV, viral hepatitis and sexually transmitted infections, 2021. Accountability for the global health sector strategies 2016–2021: actions for impact. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.
  3. Polaris Observatory Collaborators (2018). Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. The lancet. Gastroenterology & hepatology3(6), 383–403. https://doi.org/10.1016/S2468-1253(18)30056-6
  4. https://www.nature.com/articles/d41586-022-00819-8
  5. Adjei CA, Stutterheim SE, Naab F, Ruiter RAC (2019) Barriers to chronic Hepatitis B treatment and care in Ghana: A qualitative study with people with Hepatitis B and healthcare providers. PLoS ONE 14(12): e0225830. https://doi.org/10.1371/journal.pone.0225830
  6. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., Hassan, M., Janssen, H., & Khalili, M. (2021). Patient Knowledge, Beliefs and Barriers to Hepatitis B Care: Results of a Multicenter, Multiethnic Patient Survey. Digestive diseases and sciences66(2), 434–441. https://doi.org/10.1007/s10620-020-06224-3
  7. Giles-Vernick, T., Hejoaka, F., Sanou, A., Shimakawa, Y., Bamba, I., & Traoré, A. (2016). Barriers to Linkage to Care for Hepatitis B Virus Infection: A Qualitative Analysis in Burkina Faso, West Africa. The American journal of tropical medicine and hygiene95(6), 1368–1375. https://doi.org/10.4269/ajtmh.16-0398
  8. https://data.worldbank.org/country/burkina-faso

GlaxoSmithKline Recruiting for B-Together Hep B Clinical Trials

The company GlaxoSmithKline (GSK) is launching a new clinical trial, called B-Together, that will investigate how two study drugs might work together to treat chronic hepatitis B (CHB). Researchers are hoping to find new potential treatments that could be more effective than those that are currently available and could lead to positive results that last long after the treatment ends. Participants in this trial could play a role in shaping science and changing the landscape of CHB treatment around the world, and will have an opportunity to learn more about the disease itself.

The two drugs that will be investigated in this trial are GSK3228836 and pegylated interferon, also known as Pegasys. In a previous Phase 2 trial, people living with CHB received GSK3228836 for 4 weeks. The Phase 2b B-Together trial will test longer treatment with GSK3228836, followed by Pegasys, to see what effects this may have on viral antigens (such as HBsAg) in the body. 

About the Study Drugs

GSK3228836 is an investigational drug being tested as a potential treatment for CHB, meaning it is not yet approved for this purpose. Current medicines available to treat CHB only stop the virus from multiplying – they do not enable the body to fully clear the infection, so people have to keep taking these medicines. GSK3228836 is designed to stop the virus from producing proteins that may prevent the immune system from fighting the virus. Thus, the study drug may potentially allow the body to gain control over the infection.

The other drug used in this study, Pegasys, is a medicine that is already used on its own by doctors to treat CHB. Pegasys works by enhancing the body’s immune response to viral infections such as hepatitis B.

What Will Happen During This Trial?

During this trial, all participants will receive GSK3228836 followed by Pegasys. After you have finished treatment with GSK3228836, your doctor will check if it is appropriate for you to start treatment with Pegasys. If it is not appropriate, you may not receive Pegasys at all. At the beginning of the trial, you will be assigned by chance to one of two groups. Each group will receive the study drugs for different lengths of time. You will know which group you are in. The B-Together trial lasts about 79 weeks for each participant. This includes a screening period, a study treatment period, and a follow-up period.

Screening Period

At a screening visit, the study doctor will give you a physical examination, ask about your medical history, and conduct medical tests. The screening period may last up to about 6.5 weeks while the study doctor reviews the results of your screening visit to determine if you meet all requirements for participation.

Trial Treatment period

While receiving GSK3228836, you will visit the clinic for either 12 or 24 weeks. For the first two weeks of your treatment with GSK3228836, you will visit twice per week and for the remaining weeks you will visit the clinic once per week.

When you have finished treatment with GSK3228836, your doctor will assess if it is appropriate for you to start treatment with Pegasys. If it is appropriate, then you will then receive treatment  with Pegasys once a week for up to 24 weeks.

In some countries, it will be possible for you to self-inject Pegasys at home after discussion and training from your study doctor. This could reduce the number of times you have to visit the clinic.

Other study activities will vary from visit to visit and may include:

  •         Discussions about your health and medications you may take outside the trial
  •         Measurement of vital signs (i.e. blood pressure, pulse, weight)
  •         Collection of blood or urine samples
  •         Physical examination
  •         Questionnaires about your health and well-being

Follow-Up Period

During the 24-week follow-up period, you will not receive injections of study treatment, but you will complete other study visit activities as scheduled. There are eight visits scheduled in the follow up period. Your study participation will end about 72 weeks after your first dose of the trial drug.

Who Can Participate?

You may be eligible to participate in this trial if you are at least 18 years old, have been living with documented CHB for at least six months, and have also been receiving stable nucleos(t)ide treatment (not telbivudine) with no changes for at least six months prior to screening and no planned changes for the duration of the study. There are other eligibility requirements that the study doctor will review with you. Individuals who have a current co-infection with or past history of hepatitis C virus, HIV or hepatitis D virus are not eligible to participate in this trial. 

Where Is This Trial Taking Place?

This trial is ongoing in the UK, Spain, Russia, Poland, Italy, Korea, Japan, China, the US, Canada, and South Africa.

You can play a role in shaping your own health and the science of tomorrow! To learn more about this trial and check your eligibility to participate, visit https://clinicaltrials.gov/ct2/show/NCT04676724

How to Find a Hepatitis B Provider

How to Find a Hepatitis B Provider

If you have chronic hepatitis B or are newly diagnosed, it’s important to see a medical provider who has experience managing and treating hepatitis B.

Having a medical provider with hepatitis B expertise on your team not only safeguards your health but also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who orders diagnostic tests for hepatitis B. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. If your PCP has experience managing and treating hepatitis B, you may decide to continue your hepatitis B care with that provider. Or, they may recommend a specialist who accepts your insurance or practices in the same healthcare system. But,  you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases and if they have experience with hepatitis B.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The Foundation has a Physician Directory of medical providers who treat hepatitis B around the world. These doctors have voluntarily signed up to be included in the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistants communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours drive from where you live, but distance doesn’t have to be a deal-breaker. Many people see a specialist for a first visit, and afterwards, simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone or video consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life.”

Prepare for your visit: Before you see your hepatitis B medical provider, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Contact Information: info@hepb.org

CHIPO Is Looking for New Members!

By Beatrice Zovich

 

 

 

 

 

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

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

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

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

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

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

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