Hepatitis B (HBV) is a virus that affects the liver and can lead to serious health problems like liver cancer. Because it can spread through blood and other body fluids, some governments and employers have considered making HBV screening mandatory, especially for people applying for jobs or immigration. But is that fair? Let’s break down the ethical issues.
Hepatitis B screening is a simple blood test that checks if someone has the virus. The U.S. Centers for Disease Control and Prevention (CDC) now recommends that all adults get screened at least once, even if they don’t have symptoms (Schillie et al., 2023). That’s because many people don’t know they have it, and early treatment can prevent serious illness.
The problem with making it mandatory
While screening can help protect public health, forcing people to get tested—especially for employment- or immigration–related reasons can harm communities and increase stigma and discrimination.
It can take away personal choice.
Mandatory screening means people don’t get to decide for themselves if they want to be tested. Often people are not even informed of the testing taking place or why it is occurring.That goes against the idea of informed consent, which is a basic principle of medical ethics. People should be able to choose whether to get tested, especially when it involves sensitive health information.
It can lead to discrimination.
HBV is more common in certain parts of the world, such as Asia and Africa. So, if screening is required for immigrants, it could unfairly target people from those regions. That can lead to stigma and even racism. In fact, studies show that people in Asian and Black communities in the U.S. are more likely to die from HBV-related illnesses than White communities (Schillie et al., 2023). Many communities in parts of Africa and East Asia are unfairly targeted through these mandatory screening tests which limit economic opportunities and lead to social isolation and stigma.
What happens after the test?
Another issue is what happens if someone tests positive. Will they be denied a job or visa? Will they get access to treatment or linkage to care? If screening is mandatory, there should also be support systems in place—such as affordable healthcare and protection from discrimination. Otherwise, it’s not just unfair—it’s harmful.
Privacy matters.
Health information is personal. If employers or immigration officers have access to someone’s HBV status, that could well be a privacy violation. People might lose jobs or face rejection just because of a medical condition that’s manageable with treatment.
A better way forward
Instead of making HBV screening mandatory, experts suggest offering it as part of routine healthcare. That way, people can get tested without feeling singled out. Universal screening also helps reduce stigma because it treats everyone equally. Additionally, people who test positive or need the hepatitis B vaccine should have easy access to medical care and vaccination options.
In short, HBV screening is important, but it should be done in a way that respects people’s rights and reduces stigma and discrimination.
References:
Schillie, S., Wester, C., & Vellozzi, C. (2023). Universal adult hepatitis B screening: Updated recommendations from the CDC. Morbidity and Mortality Weekly Report, 72(6), 145–150. https://doi.org/10.15585/mmwr.mm7206a1
Did you know that the tiny organisms living in your gut, called the microbiome, can have a strong impact on your liver? Recent research shows that the bacteria and fungi in your digestive system play a major role in keeping your liver healthy and may even affect how hepatitis B progresses.
The gut-liver connection
Your gut and liver are closely connected through something called the gut-liver axis. When your gut microbiome is balanced, it helps protect your liver by producing helpful substances such as butyrate and tryptophan. These can reduce inflammation and support liver function. But when the microbiome is out of balance (a condition called dysbiosis), harmful bacteria and toxins can leak into the bloodstream and reach the liver, causing damage (Zhang et al., 2024).
What happens in hepatitis B
Hepatitis B virus (HBV) can lead to serious liver problems, including cirrhosis. A 2025 study found that people with HBV-related cirrhosis had fewer good bacteria such as alistipes and lachnospira, and more harmful ones including Fusobacterium and Enterococcus in their gut (Chen et al., 2025). These changes were linked to lower levels of important nutrients like tocopherol, which help protect the liver.
Another study looked at how the mix of bacteria in the gut changes as hepatitis B gets worse. Researchers found that people with chronic hepatitis B had a wider variety of bacteria compared to people without hepatitis B. They also noticed changes in the balance between two major groups of bacteria (firmicutes and bacteroidetes) that are important for digestion and immune health. These shifts in gut bacteria could help doctors understand any changes or advances in hepatitis B and possibly even predict how it might develop over time (Wang et al., 2023).
Bile acids and bacteria
Bile acids, which help digest fats, also interact with gut bacteria. In HBV-related liver disease, high bile acid levels were linked to more lactobacillales and fewer clostridiales, which suggests another kind of imbalance (Zhou et al., 2025). This connection could lead to new treatments that target both bile acids and bacteria.
Your gut microbiome does a lot more than help you digest food. It’s deeply connected to your liver and can influence how hepatitis B develops and changes over time. As scientists learn more, we may see new treatments that focus on fixing the microbiome to protect and promote liver health.
References:
Chen, Y., et al. (2025). Gut microbiota and metabolomic profiles in HBV-related cirrhosis. Journal of Hepatology Research.
Li, X., et al. (2024). Gut mycobiome and liver disease: Emerging insights. Liver International.
Wang, J., et al. (2023). Microbiota diversity across HBV disease stages. Microbiome Medicine.
Zhang, L., et al. (2024). Gut microbiota and chronic liver disease: Mechanisms and interventions. Hepatology Reviews.
Zhou, H., et al. (2025). Microbiota–bile acid crosstalk in HBV-induced cirrhosis. Clinical Gastroenterology.
Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.
We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?
The most challenging part was figuring out how to explain this to my wife…
After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the risk of transmission and maintain our health. My wife made sure to receive the hepatitis B vaccine, and we made certain that our baby received the vaccine immediately after childbirth.
Later, I took her to meet members of the nonprofit, including experts and other patients, to engage in an open conversation about the disease and its implications. Both my wife and baby are now vaccinated and protected against hepatitis B infection.
* Hepatitis B is highly infectious, and if tools and surfaces are not properly disinfected, it can survive for up to seven days. If you are exposed to hep B from a small wound (like the ones that happen during a short hair cut or shaving with tools that are not sterilized), even the smallest drops of blood from someone living with hepatitis B could cause an infection. Sexual transmission is a primary mode of transmission for hepatitis delta.
Key Questions and Answers from this Story:
If hepatitis B is sexually transmitted, how come my partner isn’t infected?
Hepatitis B virus (and hepatitis delta virus) can be sexually transmitted. The virus is present in an infected person’s blood and bodily fluids commonly exchanged during sexual activity, such as semen and vaginal fluids. There are many reasons your partner might not be positive for hepatitis B after sexual activity including:
Vaccination status: If your partner has received the full schedule of the hepatitis B vaccine, they are likely protected. The vaccine prompts your body to start producing antibodies that neutralize (attack) the virus. This stops hepatitis B from infecting your body.
Viral load: The amount of hepatitis B in your blood and bodily fluids—known as the viral load—affects transmission risk. A lower viral load reduces the likelihood of transmitting the virus to your unprotected/unvaccinated partner during sexual contact.
Type of sexual activity: Different sexual practices carry varying levels of risk. Anal sex poses a higher risk due to potential tissue damage and blood contact. Oral sex is considered “less risky” since it is less likely that there will be blood contact. The presence of cuts or sores can increase one’s risk of infection. It is always a good idea to use protection (latex condoms) when engaging in any form of sexual contact.
Use of protection: Consistent and correct use of condoms significantly reduces the risk of hepatitis B transmission to your partner by preventing direct contact with infectious fluids. While condoms are crucial in reducing the risk of transmitting hepatitis B (and D) during sex, they do not eliminate the risk completely. New condoms must be used every time you and your partner have sex, from start to finish. Latex or polyurethane condoms are most effective; avoid natural skin (lambskin) condoms, as they are not as good at blocking the virus.
For peace of mind and health assurance, you and your partner should consider:
Testing: A blood test can determine if your partner has been exposed to hepatitis B or has developed immunity from a previous infection. If they are not protected, they should start the vaccination series.
If you are living with hepatitis B, it is important to ask your doctor to test you for hepatitis D.
Vaccination: If a person is not already vaccinated, receiving the hepatitis B vaccine is the only way that one can achieve full protection against the virus.
There is no vaccine solely for hepatitis D, but since hepatitis D relies on hepatitis B to survive, the vaccine protects against both viruses.
Discuss your status: If you are starting a new romantic or sexual relationship, you should consider telling your partner about your hepatitis B (or D) status before any sexual encounter. By sharing your status, you not only instill trust in your relationship and build confidence; you and your partner can also take the necessary steps towards reducing your risk of transmitting the virus.
You can read more about tips and tricks about disclosing your status to family members in this blog
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.
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!
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.
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!
