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
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 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!
Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low awareness and education about hepatitis B.
HBV Prevalence among PWID Communities
People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus.
Barriers to Care for PWID Communities
Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019). Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here.
Prevention Strategies
One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling, hepatitis testing, and referral to drug treatment for example.
Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023). The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020).
To learn more about the resources provided by Prevention Point, click here.
World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059
Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.
Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html
World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.
Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2
The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!
Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!
Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.
Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.
Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.
Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status
References
Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2
Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!
The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.
In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps cansometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.
Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.
This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains.
When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery) and sexual intercourse and so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.
A Patient’s Point of View
The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.
Fighting Discrimination and Stigma
Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment, and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.
I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.
I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.
The Hepatitis B Foundation is proud to launch its storytelling campaign, sharing the stories of people living with and affected by hepatitis B. Join the Twitter interview at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter.
We will introduce three of our storytellers and their stories. Join the Twitter interview with the hashtag #justB and hear the poignant stories of real people living with hep B.
We will be introducing Jason, Bunmi and Maureen K. Jason, was in a difficult place in his life with addiction and depression when he learned of his hepatitis B and sought treatment. Bunmi, originally from Nigeria, talks about the loss of her father to hepatitis B- related liver cancer and the unwillingness of her family to talk about his disease. Maureen’s hepatitis B journey began with the adoption of her daughter, and the struggle with disclosure with family and friends. These brave storytellers are ready to put an end to the silence surrounding hepatitis B.
Below are the topics scheduled for discussion during the Twitter interview. How can you contribute to the conversation? Please support Jason, Bunmi and Maureen K. as they disclose their hepatitis B stories on social media. Consider sharing parts of your hep B story or pose a question. Join the conversation with the hashtag #justB.
T1. Tell us about hepatitis B, the storytelling campaign and what the foundation hopes to achieve for those affected by hepatitis B.
T2. What makes hepatitis B different from other diseases, and how do these stories highlight the challenges associated with hepatitis B?
T3. We’d like to open it up to our storytellers. Please tell us about your story, and what makes hepatitis B different from other diseases.
T4. How has hepatitis B affected your life?
T5. What made you decide to share your hepatitis B story? Were you concerned with the stigma associated with hepatitis B?
T6. Describe your experience meeting with others impacted by hepatitis B.
T7. If there is one message you would like to get across to others about coping with #hepatitis B, what would it be?
T8: What would you tell others that are struggling with whether or not they should share their hepatitis B story?
Are you just getting started with Twitter and want to know how to join the conversation? Type #justBin the search box of the Twitter application and click on the “latest option” to follow the twitter view.
You can prepare any questions or tweets you might have for the above participants in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.
The topics are labeled T1, T2, etc. so please respond/answer specific topic by using A1, A2, etc. in front of your tweets. Remember to include the #justBhashtag, which is not case sensitive, in all of your tweets.
Looking forward to sharing the stories of our guests on the Twitter view. Please welcome them by joining the conversation!
Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.
In an innovative storytelling initiative, people living with chronic hepatitis B open their hearts and share their stories of family secrets, stigma and diagnoses that came too late as they confront the impact of hepatitis B on themselves and the people they love.
The Hepatitis B Foundation, working with StoryCenter, has created unique video stories that share the experiences of people affected by hepatitis B, which affects one-third of the world’s population. The video stories, which debut May 1 in recognition of Hepatitis Awareness Month, are designed to raise awareness about the liver disease that affects 2 million in the U.S.
There is no better way to understand the human toll hepatitis B takes than to hear directly from those affected. Most people know very little about this disease and up to 75 percent of people living with hepatitis B don’t know they’re infected. The hope is that these stories will put a human face on this infection and help improve testing, vaccination and treatment.
One storytelling video, featuring former ABC 7 News anchor Alan Wang of Berkeley, CA, talks about how doctors fail to test people for hepatitis B. It was after the CEO of Newsworthy Media suffered liver damage that a doctor tested him for hepatitis B. “It was only because I (had) a medical reporter friend who connected me to a leading hepatologist that I got the attention I needed,” Wang, 49, explains in his story. After his diagnosis, he encouraged family members to be tested and his mother and siblings were also found to be infected by the disease that is easily transmitted at birth.
“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”
While a safe and effective vaccine that prevents hepatitis B has been available since 1982, many Americans did not have access to the vaccine. John Ellis Jr., another hepatitis B storyteller who lives in Pensacola, FL, was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.
“When I was first diagnosed, I was shocked the doctor couldn’t tell me how I contracted it, as if finding out how I contracted hepatitis B would somehow cure me of it. As I grow older, what’s most important to me is maintaining my health.” Ellis explains in his story that he wants to be, “bigger than his diagnosis.” He does not want hepatitis to hold him back or define him. He is an entrepreneur and he has organized a charity bike ride to raise awareness and funding for research.
Another featured storyteller is pharmacist Bunmi Daramaja, of Elkridge, MD, who grew up in Nigeria and emigrated to the U.S. She struggled with her family’s reluctance to discuss her father’s death from liver cancer, resulting from chronic hepatitis B.
“Stigma is everywhere (in my African culture),” she explained in her story. “People don’t think about the facts of how the virus is transmitted– they are afraid to even touch someone who has it. Many people don’t even want to get tested, because treatment is either not available or costs too much money. They say, ‘What’s the point?’ This needs to change.
“In the U.S., the services are here, and I want to make sure that people of African origin know there are resources. I want to end this silence,” she explained.
The Hepatitis B Foundation’s Storytelling page helps tell the story about an infection in the U.S. that is under-diagnosed, under-treated and remains stigmatized across America.
Addiction is a chronic disease, like hepatitis B, type II diabetes, cancer and heart disease. These diseases all run in families, are influenced by environment and behavior, and are notoriously difficult to treat.
No one chooses to develop diabetes or heart disease. Nor do they choose to be a drug addict or alcoholic, or infected with hepatitis B. Yet, how we view and treat people with these chronic diseases varies drastically.
As a society, we view heart disease as a tragic occurrence. It kills roughly the same number of people as cancer, lower respiratory diseases and accidents combined and costs us more than $316.6 billion in health care and lost productivity.
But most heart disease is preventable and results from an inability to make wise choices about food and exercise. Yet, when we hear about a heart attack, we don’t shake our heads and say, “If only they had exercised more,” or, “too bad they didn’t have enough self-control to lay off the junk food.”
But we do say that about smoking, drug addiction and alcoholism, and about some of the chronic infectious diseases that result, such as hepatitis B or C or HIV.
How often do we who have hepatitis B quickly tell our friends that we were infected at birth, to make sure they know it wasn’t from drugs or promiscuity? Even we who live with hepatitis B can get caught up in the notion that some hepatitis B cases carry shame and others do not.
If we can get past our moral judgements about addiction and view it instead as the chronic disease it is, maybe we can also stop moralizing and judging people with STIs or viral hepatitis or HIV. Maybe we can finally get better at talking about it, preventing it and treating it.
There is overlap between “respectable” chronic diseases like cancer and heart disease and stigmatized diseases like addiction to tobacco, alcohol or street drugs. According to the National Institute on Drug Abuse:
Tobacco contributes to 11 to 30 percent of cancer deaths and 30 percent of heart disease deaths each year.
Tobacco, cocaine, amphetamines, alcohol and steroids all contribute to heart disease.
Injecting drug use contributes to one-third of HIV/AIDS cases and most hepatitis C cases, and is now responsible for an increase in new hepatitis B infections in many rural states, despite the availability of a safe and effective vaccine.
We need to re-orient our views of addiction if we are ever to treat it scientifically. Everyone with a chronic disease deserves treatment, quality care and respect.
Between 200,000 and 300,000 people are infected with hepatitis B in the U.S. each year, 20 percent are injecting drug users. More than 80 percent of drug users who have been injecting for a decade or longer have been infected with hepatitis B.
We need effective treatment for all addictions, no matter if the drug of choice is tobacco, alcohol, heroin, fast food, sweets, or an opioid prescribed by a doctor.
April is Alcohol Awareness Month, let’s take a moment to recognize our own prejudices and discard them for the sake of all touched by the chronic disease of addiction.
Hepatitis B and Stigma 
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“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”
By Christine Kukka
But we do say that about smoking, drug addiction and alcoholism, and about some of the chronic infectious diseases that result, such as hepatitis B or C or HIV.