Did you know that people in prison are at much higher risk for hepatitis B than the general population? You would think that means there are programs in place to prevent and treat it — but unfortunately, that’s often not the case.
In a recent episode of the B Heppy podcast, researchers Heidi Emery and Kathryn Jack talk about some of the major barriers to accessing critical hepatitis B prevention and treatment services in prisons. Dr. Emery and Dr. Jack, who work at the University of Nottingham School of Medicine, reviewed prior research on the topic and spoke with people in the prison system — including those who are incarcerated, prison healthcare workers, and even guards — to understand what was happening within the prison system and hepatitis B.
You can find their published research here. Additionally, the Hepatitis B Foundation has also released a white paper on recommendations for HBV screening and prevention in corrections.
Common Barriers to Care:
Stigma and lack of information about hepatitis B
One of the biggest roadblocks? People just do not know enough about hepatitis B. There is a lot of fear and misunderstanding about how hepatitis B spreads and what it means to have it. That leads to stigma — and stigma makes people less likely to get tested or treated.
Health care isn’t always a priority in prisons
Prisons are mostly focused on safety and security — not healthcare. That means people might miss appointments because of lockdowns or staffing shortages. Even if someone wants care, they might not get it when they need it.
Lack of resources
Many prisons just don’t have the staff, funding, or systems in place to handle hepatitis B testing, treatment, or education properly. This makes it difficult for people to get timely education on hepatitis B prevention, management, and treatment.
No support after release
Often, there’s no follow-up care or connection to outside health services after someone is released from prison. So even if someone starts treatment, it might not continue. People are less likely to follow up with care when they are out of the prison system or may lack the resources to navigate the health system on their own.
Recommendations to improve care
Within this review, researchers provided recommendations on how to address these major challenges to hepatitis B prevention, care, and treatment within the prison system. They are described below-
Education makes a big difference
When people understand hepatitis B better — both those in prison and those working there, stigma goes down, and people are more likely to get help. Education programs can make a big difference to address low knowledge and stigma.
Better health systems inside and out
Connecting prison healthcare to public health systems on the outside means care doesn’t have to stop once someone is released. It can be an opportunity to make sure people stay connected to healthcare after they get out.
Policy changes that put health first
Routine testing and vaccinations for hepatitis B should be part of prison intake. With the right policies, prisons could become places where people actually get the health care they have been missing out on.
This issue is not just about prisons — it’s about public health. If we ignore hepatitis B in these high-risk settings, we miss a big chance to stop the virus from spreading in communities, too.
When you hear vitamin D you most notably think of the sun, or perhaps milk, or the small plastic bottles labeled with a bolded “D3” on store shelves. If you’ve ever been challenged by a trivia question asking what vitamin D does, you most likely know to say it helps build strong bones. In addition, vitamin D is a vital element that serves the immune, nervous and gastrointestinal systems, among our most important organs.
What you may not know about are the multiple functions vitamin D has in the body to regulate and maintain optimal health, especially for those living with chronic conditions such as hepatitis B.
The sun is the best source of vitamin D, and while everyone needs it, people living with hepatitis B need to pay extra attention to the summertime sun. Too much of a good thing can lead to harmful consequences, so it’s best to be aware of some precautions. Key considerations before spending time in the sun are hydrating with water, applying sunscreen to minimize risks of sunburn and skin cancer, and understanding the impact of exposure to sunlight on your body.
Being in the sun typically makes you thirsty. Drinking water instead of beverages with high sugars such as soda, sport and energy drinks, is better for the body and doesn’t leave behind any fats or byproducts that impede healthy liver function. Physicians from Mass General Brigham Hospital in Boston analyzed data from nearly 1000,000 woman and found that there may be a link between sugary drinks and liver disease (more here). The process of breaking down sugars leads to a build-up of unusable material that saturates the liver, inhibiting normal cells from growing and further exacerbating an already vulnerable liver. On average, the recommended daily water intake for women is around two liters, and for men, about three liters. While those are general guidelines, you may need more while in the hot sun. In addition to simply feeling thirsty, the Cleveland Clinic says that signs of dehydration include dry or sticky mouth, headache and reduced or dark-colored urine (more here).
Using sunscreen, wearing hats and protective clothing, and avoiding the midday sun are smart steps to ensure you are protecting yourself from the strong UV rays. The American Cancer Society says you should choose a sunscreen with broad-spectrum protection and an SPF of at least 30, according to the (more here). Keep in mind that the sun’s UV rays are strongest between 10 a.m. and 4 p.m. Therefore, limit your exposure to the sun during these hours and take moments to cool down in the shade.
Now, how can the sun actually help someone living with hepatitis B?
The link between vitamin D and hepatitis B has been studied for years, and evidence suggests the core of their relationship lies within the liver. Basically, the skin produces vitamin D3 from sunlight and the liver and kidneys convert it to the active form of vitamin D our bodies need (more here). And, the liver itself relies on vitamin D to behave and function efficiently. With this information, we are able to correlate why low vitamin D levels would negatively impact individuals with hepatitis B who already have a compromised liver.
Trends seen in bloodwork results of people living with hepatitis B show that those deficient in vitamin D have higher viral loads. The correlation between vitamin D levels and viral loads (more here) tells us that adequate vitamin D might play a role in lower viral load counts. And lower viral DNA is associated with lower risk of liver damage and cancer.
Not only is the sun beneficial for those living with hepatitis B, but it also has a strong connection to improving mood and mental health. The National Institute of Mental Health says that those living with can be susceptible to experiencing mental health struggles such as stress, depression or anxiety (more here). Spending time outside is a helpful activity to clear the mind, reset and process your thoughts and feelings in a healthy way. Whether you choose to enjoy a day at the lake, a walk through the neighborhood or read a good book on the patio, getting outside will support the best outcome of your hepatitis B status while boosting your mental health.
It’s hard to find something that’s free, easily obtained and life-sustaining, but the sun is an exception and is available most days, weather-dependent of course. If you have other health conditions that prevent you from being in the sun, or perhaps you don’t care for the heat, please talk with your doctor about a diet rich in vitamin D or supplementation to ensure you maintain sufficient levels.
Alternative medicine is becoming more popular, but it can be risky, especially when it’s not regulated. This is a big concern for people living with hepatitis B in places where access to medical care and treatment options may be limited. Some people sell untested treatments, promising quick cures without any scientific proof. These treatments can actually make things worse for patients. It is also important to note that currently there is no cure for hepatitis B but there are safe and effective medications to manage your condition and improve your health.
Why unregulated alternative medicine is risky:
When alternative medicine isn’t regulated, it means the treatments haven’t been properly tested. For hepatitis B patients, using these treatments can lead to serious health problems. The safety and effectiveness of these treatments aren’t guaranteed, and they can sometimes cause more harm than good. Some practitioners claim their treatments work because of divine intervention and charge high fees, taking advantage of patients’ financial circumstances and leading to false hope in their medical care.
Why evidence-based health decisions are important:
Making health decisions based on scientific evidence is crucial. Evidence-based medicine uses the best available research and clinical expertise to make decisions about patient care. This approach helps ensure treatments are safe and effective.
For people living with hepatitis B, evidence-based methods are especially important. Chronic hepatitis B can cause serious liver damage, and managing the condition requires careful monitoring and appropriate treatment. The World Health Organization (WHO) warns that while some alternative medicine practices can be beneficial, the lack of regulation and scientific validation can make them dangerous.
While the idea of quick fixes through alternative medicine can be tempting, it’s essential for hepatitis B patients to prioritize evidence-based treatments. By doing so, they can make the best decisions for their health and well-being. Always consult healthcare professionals and rely on credible sources to guide your health decisions.
Safe and effective treatment for hepatitis B:
People with chronic hepatitis B can live long and healthy lives by making liver-friendly choices like regular check-ups, avoiding alcohol and tobacco, and eating healthily. Approved drugs for adults and children help control the virus and reduce the risk of serious liver disease, though there’s no complete cure yet.
Treatments fall into two categories:
Immune modulator drugs: Interferon-type drugs that boost the immune system to fight the virus, given as shots for 6 months to 1 year.
Antiviral drugs: Pills taken daily to stop or slow the virus, reducing liver inflammation and damage, usually taken for at least 1 year.
Not everyone with chronic hepatitis B needs treatment; it’s most effective for those showing signs of active liver disease.
Helpful resources for hepatitis B patients
To make informed health decisions, it’s important to rely on credible sources and consult healthcare professionals. It’s also important to do your own research to find out more about the benefits or harms of a medication or herbal treatment. Here are some resources to help:
Centers for Disease Control and Prevention (CDC): The CDC provides comprehensive information on Hepatitis B treatment options, including antiviral medications and lifestyle recommendations.
Hepatitis B Foundation: This organization offers detailed guidance on managing Hepatitis B, including the latest research on treatment options.
Little is known about the prevalence of hepatitis B and delta viruses (HBV/HDV) among people who use drugs (PWUD). Despite being a high-risk population, awareness of these viruses is still low among both community members and healthcare providers. Two recent studies conducted in Philadelphia, which were led by the Hepatitis B Foundation in partnership with Prevention Point Philadelphia, highlight different aspects of this ongoing public health concern. The first identified barriers to screening, prevention and linkage to care, while the other aimed to dismantle those barriers.
The first study explored the obstacles to HBV and HDV prevention, diagnosis and follow-up care. The study evaluated current knowledge levels and identified the needs and preferences of both people who use drugs and providers that serve them. Data was collected through an anonymous online provider-focused survey, and interviews were conducted with community members, and both medical and non-medical staff from different harm reduction settings in Philadelphia, Pennsylvania.
Interviews with key informants revealed that:
48% of interviewed providers reported confusion about insurance coverage as a barrier to HBV screening.
45% of providers mentioned the need to address and prioritize other pressing health needs, as a challenge to conducting HBV screening.
52% of providers noted patient hesitancy as a barrier to HBV vaccination.
39% of providers identified the need to administer multiple doses as a challenge for completing the HBV vaccination series.
62% of providers reported low knowledge of HDV tests as a barrier to HDV testing.
31% of providers indicated complexity of guidelines as a challenge in HDV testing.
Overall, awareness of HBV and HDV in the community, and among staff and health care workers was low, and stigma related to drug use and harm reduction was a significant barrier to care. There is an urgent need to address this issue in a non-judgemental and non-stigmatizing way that is clear, factual and empowering. Continued financial and political support for harm reduction organizations is essential for improving health care access for people who use drugs. More efforts are needed to overcome barriers to vaccination, testing and linkage to care to create better health outcomes and ultimately increase the quality of life of people who use drugs.
The second study aimed to assess the prevalence of HBV and HDV and enhance access to care among people who use drugs, through a harm reduction organization (HRO) in Philadelphia. Participants first completed a demographic survey to help researchers gather information about their backgrounds and lifestyles, and to improve understanding of HBV and HDV risk factors within the community. Participants were then screened for HBV, and if they tested positive for certain HBV markers, they were automatically tested for hepatitis delta.
Of the 498 participants:
25.3% did not have hepatitis B immunity.
52.6% had been vaccinated against HBV.
17.9% had recovered from a past HBV infection.
2.2% tested positive for isolated HBV core antibody.
2.0% tested positive for HBV surface antigen.
0.2% tested positive for HDV antibody.
10% of those who were living with an active HBV infectionhad an HBV/HDV coinfection.
This study found that rates of current HBV infection in this community were nearly three times greater than in the general U.S. population, and the 10% coinfection rate of HDV is also significantly higher. Risk factors associated with a positive HBV status included a history of incarceration, experiences with homelessness and transactional sexual encounters. These findings highlight the prevalence of hepatitis B and D in this population. These viruses pose serious and critical public health concerns and remain under-prioritized among people who use drugs. Consistent and robust screening, vaccination, and linkage to care efforts can positively impact health outcomes for this community. Approving a hepatitis B point-of-care test (so that people who get tested can get results almost immediately), support in the form of funding and policy to allow HROs to provide full healthcare services, and adequate insurance coverage for vaccines can contribute to positive outcomes for hepatitis B and D diagnosis, prevention and treatment. These recommendations can advance elimination efforts, lower mortality, increase quality of life and center the health and needs of people who use drugs.
References
Zovich, B., Freeland, C., Moore, H. et al. Identifying barriers to hepatitis B and delta screening, prevention, and linkage to care among people who use drugs in Philadelphia, Pennsylvania, USA. Harm Reduct J 21, 199 (2024). https://doi.org/10.1186/s12954-024-01117-4
Zovich, B., Freeland, C., Moore, H., Sapp, K., Qureshi, A., Holbert, R., Zambrano, J., Bhangoo, D., Cohen, C., Hass, R. W., & Jessop, A. (2024). Dismantling Barriers to Hepatitis B and Delta Screening, Prevention, and Linkage to Care among the PWUD Community in Philadelphia. Viruses, 16(4), 628. https://doi.org/10.3390/v16040628
The American Gastroenterological Association (AGA) has released updated guidelines to prevent and treat hepatitis B reactivation (HBVr) among at risk populations. Hepatitis B Reactivation is a serious health issue for many people undergoing treatment for cancer or people on other medications. Learn more about HBVr here.
Immunosuppressive medications are used to treat many different health conditions and most types of cancers. Sometimes, these medications can cause sudden increases in HBV DNA levels and cause reactivation. This can lead to liver failure, severe liver damage and death. Because reactivation can happen to anyone, it is important to test for hepatitis B before starting any kind of immunosuppressive treatment as this can help doctors understand the patient’s previous or current exposure to hepatitis B and prevent reactivation altogether (Ali et al., 2025). If someone is at risk for reactivation, it can be prevented, and this testing helps to ensure that.
The new guidelines have identified individuals that are most at risk of HBVr according to their hepatitis B status and the immunosuppressive medications they are receiving.
People who are positive for chronic hepatitis B are at the highest risk if they take the following medications
B cell-depleting agents (E.g., rituximab), chimeric antigen receptor (CAR)-T cell therapies, or cytokine/integrin inhibitors.
Tyrosine kinase inhibitor (TKI) therapies or Janus kinase (JAK) inhibitors.
Liver cancer treatment -transarterial chemoembolization (TACE))
Co-infected with hepatitis C and on direct-acting antiviral (DAA) therapy.
High doses of corticosteroids for longer than a month
People who were previously exposed to hepatitis B (through a positive anti-HBc) or if they tested negative for surface antigen are at the highest risk if they take rituximab (a cancer treatment drug) but are at a moderate risk if they take any of the above-mentioned medications or treatments (Ali et al., 2025).
HBVr can progress rapidly, which is why screening for hepatitis B, prior to beginning treatment for cancers is important. If you take any of the mentioned medications, it is best to discuss with your doctor about your risk of reactivation. If you know about your hepatitis B status, you should disclose it to your provider or ask to get tested for hepatitis B to learn about your risk of reactivation. In the United States, all adults over 18 years of age are recommended to get tested for hepatitis B at least once in their lifetime.
Learn more about hepatitis B Reactivation on our B Heppy Podcast here.
References
Ali, F. S., Nguyen, M. H., Hernaez, R., Huang, D. Q., Wilder, J., Piscoya, A., Simon, T. G., & Falck-Ytter, Y. (2025). AGA Clinical Practice Guideline on the Prevention and Treatment of Hepatitis B Virus Reactivation in At-Risk Individuals. Gastroenterology, 168(2), 267–284. https://doi.org/10.1053/j.gastro.2024.11.008
The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is led by the Hepatitis B Foundation and is composed of organizations and individuals interested in addressing high rates of hepatitis B infection among African communities globally. Over the past year, CHIPO has grown its membership to include over 70 community-based organizations and federal agencies, all of which are working to raise awareness about hepatitis B among African immigrant communities, and increase rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis Outreach Network (HONE) at the Ichan School of Medicine at Mount Sinai Hospital in New York City, and their Project Coordinator, Assita Belemkoabga. Please enjoy a recent interview with Assita, as she describes her work, including successes and challenges, the positive impacts she and HONE have had, and hopes for the future.
Could you please introduce yourself and your organization?
My name is Assita Belemkoabga, and I am the Coordinator for the Hepatitis Outreach Network (HONE) at the Icahn School of Medicine at Mount Sinai. HONE focuses on hepatitis B and C prevention, screening, and linkage to care for immigrant and minority groups in New York City (NYC) for chronic hepatitis B and C. The goals of our organization are: raising awareness and providing education on hepatitis B and C; providing free comprehensive screening for hepatitis B and C, and ALT levels; and connecting people who have completed screening to healthcare services, including vaccination and treatment. My focus is providing HONE services in the African community.
Could you tell me a little bit about what some of HONE’s programs are that specifically address hepatitis and other health concerns in African communities?
The HONE program provides hepatitis B and C screening in the community and connects individuals who test positive or require vaccination to medical care and treatment.
In addition to screening, we also provide culturally sensitive hepatitis B educational presentations which are tailored to specific communities, educating them about transmission, symptoms, treatment options, and prevention. We also do outreach in African, Russian, Chinese and Hispanic communities and foster partnerships with community organizations, places of worship, and leaders to maximize our reach and create awareness. We provide programs in a variety of languages including English, French, Spanish, Mandarin and Russian. In the communities we serve there are many people without health insurance, thus making HONE a viable option for many people.
Which countries are primarily represented in the African diaspora that HONE serves?
The HONE program has expanded significantly since its beginning as a research study focused on West African and Asian communities. In the African community, our outreach efforts have not targeted any specific nationalities, but through faith-based organizations (FBOs) we see individuals of various nationalities. This year alone, we have engaged individuals from numerous countries, including Senegal, Burkina Faso, Togo, Ghana, Gambia, Mauritania, Ivory Coast, and Guinea.
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?
I have identified three primary barriers to effective health education and outreach from my experience. Firstly, linguistic barriers pose a significant challenge, as many community members may not speak English or French fluently. Secondly, stigma and mistrust towards the healthcare system affect our efforts to engage community members in health education and screening. Lastly, socio-economic factors often take priority over health concerns, leading some individuals to prioritize work over preventive measures.
To overcome these challenges, community leaders play a vital role in explaining the importance of our program and the benefits of screening. We are also fortunate to have volunteers who assist with on-the-spot translation. However, having access to additional volunteers or health educators who speak one or two major African dialects would be incredibly valuable in helping us better serve our community.
What are your favorite parts about your job? What got you interested in this work?
I truly enjoy the sense of fulfillment that comes with making a positive impact in people’s lives. In my role, I have the opportunity to connect with people from diverse backgrounds and provide support, resources, and education that can significantly improve their health and well-being.
What drew me to this work is the desire to address health disparities and promote health equity, particularly in the African immigrant community that I am part of. Seeing the tangible difference our efforts make in people’s lives is incredibly rewarding. Whether it is helping someone access life-saving treatment, providing education on disease prevention, or simply being a listening ear, I know that my work is making a real difference. That’s what motivates me to continue doing this work.
Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the US?
Through my experience working with HONE, I have had the opportunity to connect with other organizations doing similar work. Building on this network, I encourage us to continue efficient outreach and providing tailored education.
Our program at HONE has successfully streamlined the care process: Participants are able to receive a comprehensive initial visit within two weeks of their viral hepatitis B or C diagnosis. The initial visit with a gastroenterologist includes consultation, blood work, Fibroscan, and ultrasound. Expanding this model to a wider audience would be a significant step forward in addressing viral hepatitis disparities in our community.
Thank you so much for taking the time to speak with me today and for sharing more about the great work HONE has done and will continue into the future!
Clinical trials play an important role in the development and approval of treatments for hepatitis B virus infection. Clinical trials can show how well new medicines work in people and can compare new medicines with current treatment options. They provide a great opportunity to help advance hepatitis B research and give people living with hepatitis B virus infection access to new treatments.
GSK is launching a new phase 2b clinical trial called B-United, which will test a study drug called daplusiran/tomligisiran (DAP/TOM) followed by another study drug called bepirovirsen as a potential new treatment for chronic hepatitis B virus infection.
DAP/TOM is designed to lower the level of a protein called hepatitis B surface antigen in your blood. Bepirovirsen is designed to further lower the level of hepatitis B surface antigen and stop the virus from making it, which might allow the immune system to control the virus. The therapy being tested in this study is not currently approved for treating chronic hepatitis B virus infection. However, the study drugs have been given to adults in other studies. B-United is the first study in which the two study drugs are given in sequence to adults.
If eligible, you will receive an investigational therapy that consists of:
1)DAP/TOM OR placebo for 24 weeks followed by
2)Bepirovirsen for 24 weeks
You will continue your nucleoside/nucleotide analogue (NA) treatment while receiving the study drug(s)/placebo. This means that if you join this study, you will have the opportunity to receive at least one experimental treatment. Following study treatment with DAP/TOM (or placebo) and bepirovirsen, you will continue your NA treatment for 24 more weeks. The study doctor will then determine if you can stop your NA treatment and, if so, you will be off NA treatment for up to 28 weeks while closely monitored by the study doctor.
You could be in the study for up to 110 weeks (about 2 years). You will not know whether you are receiving DAP/TOM or placebo, and neither will the doctor (until after the study ends). You will have medical visits throughout the study, where the doctor will check on hepatitis B viral activity and your overall health.
You may be eligible to participate in the B-United study if you:
Are at least 18 years old (the minimum age may be higher in some countries);
Have had diagnosed chronic hepatitis B virus infection for at least 6 months;
Have been on stable NA treatment (sometimes referred to as antivirals, such as tenofovir or entecavir) for the past 6 months, without any changes for the past 3 months.
You will also need to meet additional requirements. The study doctor will review these with you.
The B-United study is being run in many countries, so there is an opportunity for people in many areas of the world to participate. To find out more information and see if you might be eligible, please visit www.BUnitedStudy.com.
Since 2016, the Hepatitis B Foundation has run a program called Hepatitis Delta Connect which aims to increase awareness of hepatitis delta and support for those living with the virus. For this month’s blog post, we sat down with Dr. Carla Coffin, a hepatologist in Canada, who is active in the hepatitis delta space.
Please introduce yourself and describe what you do and where you work.
My name is Dr. Carla Coffin, and I am a hepatologist at the University of Calgary in Alberta, Canada, I am a clinician scientist who does research on hepatitis B and this year I am the president of the Canadian Association for the Study of the Liver. Calgary is the founding/coordinating site for the Canadian Hepatitis B Research Network, which helps lead a collaboration of researchers, scientists, and practitioners across Canada for hepatitis B research and advocacy.
How common is hepatitis delta in your location or nationally?
That is an excellent question because until relatively recently, we didn’t know that much about how common hepatitis delta was in Canada. Most studies were single-site, single-center studies, showing about 1% prevalence overall in people living with hepatitis B. Then the Canadian Hepatitis B Research Network in collaboration with the National Microbiology Lab and the National Reference Lab in Canada did a study, led by Dr. Carla Osiowy, that showed, based on a retrospective screening of cases that were referred for hepatitis delta testing, that the prevalence was about 3% overall. Now, there’s more recent data that is consistent with that approximation of about 3%. We are also conducting a study that shows that for people who are being referred for delta screening, their overall positivity is about 4%. These are specific studies, but if you are just looking at universal screening rates of everyone who is living with hepatitis B who is potentially at risk for hepatitis delta, and not necessarily pre-identified, it’s much lower, maybe only about 1% or 2%.
What are the current screening recommendations and protocols in Canada for hepatitis delta virus (HDV)?
Historically, the recommendations from our major guidelines have been risk-based screening. So, people that are coming from areas where we know hepatitis delta is endemic. People that may have other risk factors such as a history of injection drug use or clinical characteristics that might trigger the clinician to suspect hepatitis delta co-infection. But based on that, I think that people are missed or are not diagnosed, so there’s inaccurate epidemiology just on risk-based screening. Our updated hepatitis B guidelines, which hopefully will be published in 2025, are more consistent with other expert recommendations to do universal screening. So at least a single, one-time test will be recommended for all people living with hepatitis B, to screen for hepatitis delta. And many of our laboratory partners agree with these recommendations. So hopefully there will be a change in the near future for that.
Do you think the reported prevalence is accurate or are people missing?
I would say that the current reported epidemiology of about 2 to 3% is likely to be accurate, but without having a robust universal screening program and robust reporting of hepatitis delta-positive cases, then I can’t say that with 100% confidence. One of the metrics that the Public Health Agency of Canada is advocating for is to have more robust data collection on hepatitis D epidemiology. That’s one of the calls by Action Hepatitis Canada, which is an advocacy group.
So, I think the epidemiology is accurate based on the data we have, but I can’t be 100% confident until we do more robust studies.
What do you think could help to address some of the underdiagnosis of hepatitis delta globally?
We need universal screening to ensure that people are diagnosed and not just rely on risk-based testing. We talk about knowing where hepatitis delta is endemic, but we should also recognize that there are probably countries where the prevalence is higher, but because of a lack of screening, we don’t know where it is actually endemic.
Even in my practice and just this week, we came across a patient that had been followed in our clinic for 15 years with hepatitis B and we only diagnosed this person with hepatitis delta recently, because we hadn’t screened it before.
And I think the other important thing is to increase awareness among health practitioners. A specialist might know about hepatitis delta, but a primary care provider or non-hepatologist would be left less aware. Increase education of healthcare practitioners to say, you know, if your patient has hepatitis B, they should be screened for hepatitis delta.
What do you usually do to help patients manage hepatitis delta?
Well, I think the first thing is you need to explain as clearly as possible exactly what hepatitis delta is and how you get hepatitis delta. How do you prevent it from spreading?
Explain how it’s transmitted by sharing blood and body fluids, highlighting that if you get the vaccine for hepatitis B, that protects you against both B and delta. Then explain what delta can do to your liver and how it can increase your risk of getting liver damage, or liver scarring or cirrhosis, how it increases your risk of getting liver cancer, and the importance of having regular checkups on your liver. So, regular blood tests and regular ultrasounds for monitoring for liver disease and for liver cancer. A lot about management is empowering the patient and giving them educational resources. Then the other thing is to discuss the treatments. There is only one treatment approved for hepatitis B in Canada, and you can use it for hepatitis delta, and that’s interferon. That’s the only thing we can currently use to treat hepatitis delta.
If/when a new drug is approved in Canada, do you think distribution and uptake will be straightforward or do you perceive challenges?
Yes, there will be many challenges. Part of it stems from underappreciation of hepatitis B as well as hepatitis delta. So, if a new drug is approved, it may be a challenge just to raise awareness about it.
And the second thing is that health care is federally funded, but the funding is then sent to each jurisdiction. The provinces and territories decide how healthcare funding is spent, and then there’s a complex approval process. It starts with Health Canada approval and then there’s this pan-Canadian drug agency called CADTH, the Canadian Agency for Drugs & Technologies in Health, that reviews the medication and sees whether or not they would recommend it. Then each provincial agency looks at the review by CADTH and decides if they want to have it on the formulary.
So, it could be time-consuming, complex, and challenging because of these factors.
Can you describe some of the advocacy efforts in which you have been engaged on hepatitis delta at different levels, and with different stakeholders?
Yeah, so I’m happy to say we’ve been having some success with advocacy. So different stakeholders and partners include Action Hepatitis Canada, the Canadian Liver Foundation, and our professional organization, the Canadian Association for the Study of the Liver. Activities we have done include going to Parliament Hill in Ottawa and holding our Annual Viral Hepatitis Elimination Day on May 9th. We’ve done that now for three years. With the help of all these partners and stakeholders, we have been engaging various governments (so government ministers at the provincial level and at the federal level), and also working with our federal health agencies (so the Public Health Agency of Canada) and having discussions with them to increase the messaging about hepatitis delta.
Are there any messages about hepatitis delta that you would like to share with policy or decision-makers?
I think you need to start with the patient’s voice. What I found most striking when we were meeting with the different policy decision-makers and government officials was that the physicians or the experts could talk about hepatitis B and talk about hepatitis delta and you didn’t see the same impact, but we brought patients with us when we had our meetings and when the patients spoke up and talked about their lived experience, you could really see their story having a strong impact. Then, also try to support the work of our partners.
What are some possible programs or initiatives that can help raise the profile of hepatitis delta and improve participation in the care cascade?
A lot of the people affected by delta are non-Canadian born, so there are a lot of challenges in navigating the healthcare system and language barriers. If we had more in terms of language or translations, I think that would be a good way to increase participation in healthcare and potentially raise the profile. The second is the education of healthcare practitioners, going beyond the specialist, and talking to primary care and family doctors.
Also, perhaps starting at the community level, at a non-academic center to raise more awareness about hepatitis delta and involving people with lived experience. But that’s a bit more difficult because there are so many, at least in Canada, challenges with understanding the language and understanding that patients often have many other challenges that it’s hard for them to think about their health care.
Do you have any final thoughts on hepatitis or hepatitis delta?
There’s been a lot of progress on hepatitis B with the drugs that we have currently, the effective nucleoside analogs, and with the hepatitis B vaccine, of course. It’s a remarkable vaccine, but we need more research and investment in both basic science research to try and find a cure for hepatitis B, and more public health research and investment to reach those that are living with hepatitis B, to provide them treatment and limit financial barriers. Also, more research and investment for hepatitis delta and testing. There’s not even a standardized test for delta. So, my final thought would be that we’ve done a lot, we’ve made progress, but there’s still more work to be done, and we need more government and industry funding.
In honor of Liver Cancer Awareness Month, the Hepatitis B Foundation sat down with Ivory Allison, National Senior Director of Community Impact at the American Liver Foundation (ALF), to discuss what this month means to ALF, how they celebrate, and why addressing liver cancer is so important. Read on to learn more!
Could you please share a little bit about the history, vision, and mission of the American Liver Foundation (ALF) and what are some of the programs and activities that you lead?
Absolutely. First, thank you for inviting the American Liver Foundation to be a part of this. We are very excited to have this opportunity. Partnering with the Hepatitis B Foundation is something that we’ve done for a very long time, and we enjoy having the opportunity to continue this partnership, especially during October.
The American Liver Foundation was created in 1976, so we are 48 years old. we were created by the American Association for the Study of Liver Disease (AASLD). That organization is comprised of scientists and healthcare professionals, who at the time were concerned with the rising incidence of liver disease and the lack of awareness amongst both the public and the medical community at that time. The mission of ALF was to complement the programs and services provided by AASLD. So, they focused on medical professionals, and we focused on patients and the general public. We are a 501(c)3 nonprofit and our mission is to promote education, advocacy, support services, and research for the prevention, treatment, and cure of liver disease. When you look at that, that’s huge to cover because we don’t focus on any specific liver disease – our focus is on liver disease in general.
We try and make a measurable difference in the fight against liver disease by providing financial support for medical research. We have a research department and education for medical professionals. For example, we had a few education programs this past summer. We launched a program called Project ECHO for medical professionals and providers to learn more about MASLD, or fatty liver disease, and we’re going to continue that the rest of this year, every month, and continue it hopefully in 2025. And of course, programs for advocacy and information for patients, including educating patients and their families by creating public awareness campaigns about liver wellness and disease prevention, are our focus.
I currently oversee a few different initiatives. One of them is our liver cancer initiatives which include a two-day liver cancer conference that we’ve held since 2020, called the Educated Patient for patients and caregivers. This year we’re trying something new where we are focusing on a liver cancer series that we actually kicked off in September, specifically for pediatric liver cancer, because September was Pediatric Cancer Awareness Month. In October, we actually have two programs that will be happening for liver cancer and then we have one that will be ending in November. The other couple programs that I’ve overseen include our Rare Liver Disease Summit, our autoimmune forum, and our pediatric initiatives.
I also oversee some of our collaborations with the Center for Disease Control Viral Hepatitis Division. I have worked with them for the last three or four years on programs, including hepatitis C barriers to treatment in community-focused primary care.
Is there anything in particular or maybe a couple of things that you enjoy most about your work?
I really enjoy working with the partners, and our partner organizations. Hepatitis B, hepatitis C, and other liver diseases affect so many people, especially in diverse communities and that’s also something that I’m glad that we have had the opportunity to focus on that under our CEO Lorraine Stiehl, who’s made that a priority. Liver disease, of course, affects so many different people and to be intentional about making sure that we focus on these particular groups where liver cancer is high is crucial. Being able to do programming and targeting these communities to educate them is something that I think has been exciting.
What are some of the primary causes of liver cancer?
Hepatitis B and hepatitis C are common risk factors for liver cancer worldwide and people who are infected with both viruses have an even higher risk. There are certain risks to getting liver inflammation such as heavy alcohol use and tobacco use of course. MASLD is also a high-risk factor for liver cancer. What ALF has been trying to do is have programs specifically for risk factors for liver cancer. But people who have hepatitis B, hepatitis C, or MASLD often don’t realize that they are at high risk for liver cancer. So, our goal is to go to those communities to educate them about the potential risk of liver cancer.
Why is early detection of liver cancer so important and what are some strategies that can be used to increase prevention and early detection of liver cancer?
Improving early access to screening, education, and treatment is vital. This includes educating the general public and people who have liver disease about liver cancer, so that we can prevent it. It is difficult when people have liver cancer and have to go through treatment or get a liver transplant.
At ALF, we have a public health campaign called Think Liver Think Life. It’s a national public health campaign that which aims to ensure every American understands their risk for liver disease, factoring in things like drinking heavily, smoking, and being in the “baby boomer” generation. We tried to allow for the appropriate screening and care coordination through this campaign. We have liver health specialists that go around the country to different events educating and raising awareness and providing screenings in some locations about these risk factors.
What are the barriers when it comes to raising awareness or implementing screening protocols?
Resources and language barriers. For us, we have someone on staff who oversees our connection to care. For example, when we’re out in the community educating people about liver disease, doing screenings, or are at the clinic, we have someone on our team who is bilingual in Spanish, and she can connect with these patients. We have also made multiple languages available on our website, so you can translate the website from English to Spanish, Chinese, or Italian. This has been very helpful for many people. Also, when you talk about certain communities who are so focused on their families and work, they put their health on the back burner. They’re focusing on feeding their children, taking care of their families, and they aren’t putting their health as the number one priority. And we see that all over, right?
What we’re trying to do now is to make it so that we are educating the whole family, instead of focusing on one person. We’re trying to say to the mom, “This is important.” If your child has MASLD or someone in your family may be at high risk, it’s important for not just them, but for you as well to be screened and tested because many people, especially women, put their children’s health before their own. We like to say, if we can educate the mom or the wife, we educate the whole family.
So, make sure you’re getting screened because when your family sees what you’re doing, they’ll normally follow through. They will also make sure that they’re getting screened or that they’re eating healthy and cutting back on cigarette and alcohol use.
Is there any advice you would give to someone who is currently living with liver cancer, someone who’s indirectly impacted, or someone at high risk of liver cancer?
For someone living with liver cancer it is important to not isolate yourself. I can imagine it is very overwhelming and very scary to be diagnosed with liver cancer and living with liver cancer. But make sure that you are communicating with your family, friends, especially your doctor, and connecting with others who are going through what you’re going through. At ALF, we have a private liver cancer Facebook group for patients as well as caregivers. You can also join that group to find that community so you can connect with people and talk with people. We also have monthly support groups at the American Liver Foundation via Zoom, moderated by a licensed social worker. You can connect with others and just talk. You see a lot of people who are going through liver cancer who get depressed, and it’s really difficult for them to continue with treatment. So, I would say, don’t isolate yourselves. Find your community. If it’s two people, three people, whoever it is, and make sure you continually connect with your medical team. Get to know your team and understand that you’re the boss of your healthcare team. Don’t be afraid to communicate with them and let them know what’s happening or what’s going on. If you’re not comfortable with your team, first talk to them. If you’re still not feeling that team, move on, because again, you’re the number one.
If you’re at high risk for liver cancer, I would say, again, talk to your medical providers and find out what the next steps are and what you can do to prevent liver cancer. Talk to them, educate yourself, but don’t overwhelm yourself. Educate yourself because what the medical providers tell you may be overwhelming. Also, get vaccinated against hepatitis B, get tested for hepatitis C, and get medical care if you have either virus.
Why is it important to have a month specifically dedicated to liver cancer awareness, and what are some activities that ALF is involved in to celebrate liver cancer awareness month?
I think it’s important for us to have an opportunity to highlight this particular disease, raise awareness, and educate the public. It puts a spotlight on this disease and for an entire month, we can have campaigns and weekly programs and put a face to liver cancer so people are knowledgeable, and the importance doesn’t get lost throughout the year.
For Liver Cancer Awareness Month, we have a few things happening. We have a program on October 23rd on how to prevent liver cancer if you are at high risk. It’s going to be in Spanish. We are also releasing a video on how to be involved with your medical team and how to interact with your team.
We are also going to be releasing a 30-Day Menu of Recipes so people can hopefully check out some healthy recipes. We tell people all the time that they should eat healthily, and sometimes we realize many people don’t know what that means. To address this, we are going to be launching in October a 30-day menu. Then, of course, our Think Liver Think Life campaign will pick up a little extra in October as well.
Is there anything else you would like to share?
This year, we also launched a patient registry. It’s the first-ever patient registry for all types of liver disease, and it will help provide researchers with a better understanding of liver diseases, the impact of current treatments, and how liver disease affects patients. People can find more information at www.liverpatientregistry.org, and they can find and read about why they should participate, what they would have to do, how it works, and who can participate. And of course, they can always go to our website, www.liverfoundation.org, for more information on any of our programs, events, and policies.
Thank you so much for taking the time to speak to the Hepatitis B Foundation today! We really appreciate your time and insights, and all of the great work ALF is doing!
The Coalition against Hepatitis for People of African Origin (CHIPO) is a community coalition co-founded and led by the Hepatitis B Foundation. We are composed of organizations and individuals interested in addressing the high rates of hepatitis B infection among African communities around the world. CHIPO serves as a forum for sharing information and best practices and increasing national and global capacity to improve hepatitis B awareness, testing, vaccination and treatment among highly affected African communities.
This month, CHIPO interviewed member organization, the Africa Health Research Institute in South Africa about their mission, work, and goals, especially related to hepatitis B. Read on to learn more about the great work of this organization!
Could you please introduce yourself and your organization?
I’m Dr. Janine Upton, currently a Project Manager within the discipline of implementation science at the Africa Health Research Institute (AHRI), Durban KwaZulu Natal, South Africa.
AHRI is an independent, transdisciplinary scientific research institute based across two campuses in the province of KwaZulu-Natal (KZN) in South Africa. AHRI’s research combines population, basic and translational, social, implementation and clinical sciences to understand and intervene in the health and well-being of South African communities. AHRI works in partnership with local communities and South African academic, governmental, and other policy stakeholders, and collaborates with over 60 institutions globally. AHRI prioritizes the training of the next generation of African scientists. The work of AHRI’s ~700 scientists, students and staff members is driven by the values of ubuntu, transformation, leadership, innovation, excellence and collaboration.
Could you tell me a little bit more about your organization’s programs and campaigns?
AHRI actively drives an HIV/TB/Emerging Infections (like COVID and Mpox) program, and more recently an HBV agenda, partnering with media outlets (TV/radio), the Department of Health (DoH), schools, the Department of Agriculture (DoA), local municipalities, and South African Police Services (SAPS), amongst others, to educate and raise awareness of these diseases within the populations most affected by them. More specifically, AHRI has recently put hepatitis on its strategic map by establishing the study entitled “Evaluation of Vukuzazi LiVEr disease – Hepatitis B: A study to determine the prevalence and characteristics of chronic hepatitis B virus infection in the Vukuzazi population to inform interventions for diagnosis, treatment and prevention” (EVoLVE). See our website for more details: EVoLVE Hepatitis B Study – Africa Health Research Institute (ahri.org)
EVoLVE aims to address the pressing need to develop insights into local population HBV epidemiology (considering vaccination, exposure and infection), to quantify the need for – and potential impact of – antiviral treatment. EVoLVE also aims to enhance local pathways for the assessment and provision of clinical care to people living with HBV infection in South Africa. Data collected as part of an interdisciplinary collaboration between clinical and social scientists, in consultation with communities, will be used to inform responsive and sensitive-to-context interventions specifically targeting those at greatest risk of infection and disease, and provide clinical care, support and education, whilst developing an evidence-based foundation for future studies.
EVoLVE has already celebrated a successful collaboration between the clinical and human sciences by involving a Community Advisory Board (CAB) in the inductive development of community understanding and perceptions pertaining to the hepatitis B virus (HBV). In January 2024, the AHRI EVoLVE Team participated in a community engagement with the AHRI CAB and conducted FibroScan training with AHRI clinical and research teams. (FibroScan is a non-invasive ultrasound that measures liver stiffness and fat content to help determine the health of your liver.)
What are some challenges that you face in addressing hepatitis, how have you worked to overcome these? Are there any additional resources that would be helpful to have?
Poor community knowledge, awareness and applicability of HBV
The knowledge of HBV within communities was reported to be very limited and as a result, it is not perceived as a local concern. Poor screening and limited knowledge of prevention methods are other major barriers. Liver disease was not seen as synonymous with HBV, and there was an absence of any isiZulu (indigenous language term) for hepatitis B. Whilst participants were aware of liver disease, they lacked specific knowledge about HBV infection, often misattributing liver disease to alcohol use, traditional medicines, or poor adherence to ART (antiretroviral therapy, typically used to treat HIV infection). Liver disease was perceived to be a “white or rich person’s” disease, and subsequently not a community health concern.
Stigma and discrimination
Stigma and discrimination are a challenge as participants associated the symptoms of liver disease as synonymous with untreated HIV infection, which remains highly stigmatized in South African society. This often resulted in the loss of connections and the withdrawal of social support from families and communities. Caregivers, family members or other members of the community also experienced discrimination when trying to support someone suffering with liver disease. Additionally, participants described negative healthcare experiences, feeling dismissed and ignored by health care workers.
Inequitable access to healthcare
For people living with hepatitis B (PLWHB) who are advised to undergo long-term treatment, adherence presents a significant challenge, particularly for those experiencing food insecurity. These individuals often face the dilemma of prioritising feeding their families over covering the costs associated with treatment. Even when medication is provided at no cost, additional expenses such as transportation to healthcare facilities and time away from other responsibilities create financial burdens that are difficult to manage. As a result, many individuals become discouraged and instead seek support from traditional healers, who are more accessible within their communities.
You can learn more about health care challenges here:
In terms of additional resources, we were able to secure a small project grant from University College London, called ‘Grand Challenges,’ but longer-term funding will be needed to build on these foundations.
What do you think are some of the biggest barriers against raising awareness and addressing rates of hepatitis screening and linkage to care at the local and national levels, and what more do you think can be done in this sphere of awareness building?
There is an urgent need to identify social and psychological barriers to treatment adherence and develop strategies to overcome them, whilst concurrently adopting a social and medical focus on the identification of the determinants of health. In so doing, strengthening messaging and information available for the uptake of communities and empowering individuals and communities to improve health outcomes and reduce HBV transmission is critical. The hope is to at the same time address the misconceptions around the disease and reduce the stigma and taboo that occur within the silence surrounding the topic. This will assist in the scaling up of resources required to promote knowledge of the disease in communities, and encourage support systems necessary to improve mental health and treatment outcomes.
What are your favorite parts about your job and what got you interested in this work?
I love the problem-solving that comes with my job – that people can come to me with novel and ever-changing requests and challenges to which I can apply my mind. Essentially – that is research! It’s identifying a real-world problem and applying your mind in finding solutions! I feel like the nature of the work we do at AHRI is meaningful and seeing this reflected in longitudinal data is truly rewarding. I love the field of health, it’s always been a passion of mine, so being able to combine a passion with a strength in enriching ways is fulfilling to me!
