Hep B Blog
HBV, HDV, Hepatitis B Awareness, Hepatitis Delta (HDV), Liver, Living with Hepatitis B

Nargis Speaks about Living with Hepatitis Delta

The hepatitis delta virus is a sub-virus of hepatitis B that depends on the hepatitis B virus to survive and reproduce. Hepatitis delta affects between 5% and 10% of people living with hepatitis B, and can quickly progress to a more serious and advanced liver disease than HBV alone. Since 2016, the Hepatitis B Foundation has coordinated a program called Hepatitis Delta Connect, which works to raise awareness of hepatitis delta; promote screening, research, and management of the virus; and provide support to individuals living with and affected by the disease. This includes capturing the lived experiences of hep D. This month, Ariana, an intern at the Hepatitis B Foundation, interviewed Nargis, a resident of New York, who is living with hep B and hep D, about her experiences of the viruses, from diagnosis to management. We thank Nargis for sharing her story!

Ariana: Thank you very much for joining today! When were you initially diagnosed with hepatitis delta?

Nargis: I was diagnosed in 2005. I did my blood work at the end of 2005 and got my result at the beginning of 2006. The reason why I went to do the blood work is because I had very severe flu-like symptoms.

Ariana: How did you find out you were living with hepatitis delta?

Nargis: I was out of the city for a trip, and felt sick after, so I immediately returned to the city and did blood work and found that it’s hepatitis D. I was surprised because I know if you don’t have hepatitis B, hepatitis D would never exist in your body. 

Ariana: How did you initially feel about it?  

Nargis: To be honest, I was depressed. It happened during the best time of my life when my career was at a high point, and I’m feeling like I’m enjoying life and everything is fine. All the difficulties in my life were gone. During that time, I was at the top of the level of my career and I could do something for myself and for my family. And I had big plans, and when I was diagnosed with hepatitis B, all my plans just collapsed. My doctor just straight up told me that I’m lucky to have Hepatitis B and D, not C. They did not give me any kind of psychological support, and I was extremely depressed. Thank God for my family and my husband for being there to support me always.

I’m originally from Dushanbe, Tajikistan. It’s a small country in central Asia. Unfortunately we don’t have enough good medicine to help with this kind of thing, as the government is not supporting nor providing any kind of medication. The medication I needed had to be ordered from Russia to bring here, and was very expensive. The prices go up and down. And, this one is also not guaranteed to work. I got interferon, but it didn’t work for me. After one month of injections, I got very, very sick. And the doctor decided to stop it. 

Ariana: How do you think this disease has impacted your physical state?  

Nargis: Mostly it’s the mental changes when you are becoming depressed, but when you’re starting the treatment, you feel so weak. I had severe weakness, fatigue. I also had GI (gastrointestinal) problems as well.

You get kind of the nausea, no vomiting, just the nauseous feeling. But in the morning, you are feeling fatigued. You are always the one to sleep and have joint pain. Now I’m just feeling kind of the joint pain, but when I’m starting to work or do some activity, I get tired. I always feel the fatigue, you know, or the fatigue sometimes is so much, I don’t want to even do anything, but I always push to do things I should do. I often get bad pain.

But I’m always appreciative, you know, as I am still alive, and I have to thank my family for that.

Thank God. My third daughter was checked for hepatitis B and D too. Thank God, she got her vaccination, which is making us happy. Now I have four kids, and I’m calling my fourth child my miracle child, she gives me so much happiness. 

And all of them, all my kids are free from hepatitis B. They got all the vaccinations, my husband as well. And routine family life and my job are like keeping me in the life, making me happy, and I’m not thinking so much about my hepatitis. Thank God, I have my arms, my legs and I can eat, I can walk, I can see. This is more than enough to keep me happy.  

Ariana: Why is raising awareness of hepatitis delta important? 

Nargis: It’s important for people to know about it and I’m talking about my experience. I didn’t catch it from receiving medical care in my country, but a lot of people don’t know about this one and, if you don’t know, you don’t pay attention. We must be careful with  needles [which can possibly transmit hepatitis delta].

It is important to make information booklets, allowing patients to talk about their experiences, finding people similar to us, and we are people, we still have this disease, but we are very active, we can work, we can sing, do something good. 

It is better if you support each other as well, every person is important in this life, every person can be very important for somebody else.

People must know. If you’re somebody who doesn’t have education, maybe there’s some pictures with a simple explanation to tell them. It really works because, when HIV and AIDS existed in this world last century, the people didn’t know so much about it. And when the other foundations and the people and mass media started to get to work and explain, and gave out the information booklet, people are starting to pay attention now. And I’m thinking this can work for hepatitis as well.  

Ariana: What do you wish more people knew about this disease? 

Nargis: It’s hard to always be healthy. I wish for everybody to be healthy, but it’s now hard to be healthy, because you never know where you can catch hepatitis…And just so I can wish for people to keep their eyes open and not be afraid.

Keep your eyes open. Where are you going? What are you eating? Which kind of medical offices are you going to? If you have the blood transfusion, using the needles or something, or some kind of tools used for dental procedures, just to make sure all of them, they’re sterilized and clean. 

Be open mentally and healthy. It will help you in this kind of situation as well. You know, talk with somebody if you can talk with some of your family members or with people from outside. I’m an open person, and for me, it’s very, very helpful.

Also, Dr. Kushner invites me to Zoom classes where I hear about the Hepatitis B Foundation, the kind of research you have, what the people around the world are trying to do and how to help patients. It’s given me support. It’s given me kind of the hope that not everything is lost and I believe that some medication will be invented soon in the world to help the millions of people with hepatitis B and D. 

Ariana: What resources do you think you would have wanted initially when you got diagnosed with hepatitis delta?  

Nargis: Getting the right medication for people is very important. Insurance companies should help the patient to get the right medication. And also, I’ve been in a research study and the first research study I got is a medication for hepatitis B and D. The doctor teams are working specifically with this kind of patient when the patient goes to the hospital and does the blood work to see the level of the hepatitis B and D and also the liver enzymes. 

Also patients are depressed and always need some support group, maybe some social workers can closely work with people who have hepatitis B and D.

Ariana: Do you think there’s anything else you would like to share about your experience? 

Nargis: I would like to tell the people who have hepatitis B and D, do not be afraid. The doctors are working, and the research team is working hard. We’re not alone in this world. The Hepatitis B Foundation and many others are working on this problem. Do not lose hope. Be powerful, be happy, thank God we are alive, and support each other.

Ariana: Awesome. Thank you so much for sharing your insight and experiences with us today!

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

CHIPO Partner Highlight: Hepatitis Aid Organization

 

 

 

 

 

 

 

 

 

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation and is comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis Aid Organization, and their Executive Director, Lutamaguzi Emmanuel. Please enjoy a recent interview with Lutamaguzi, as he describes his work, including successes and challenges building hepatitis care capacity and multi-national partnerships.  

Could you please introduce yourself and your organization? 

My name is Lutamaguzi Emmanuel, I’m a person living with hepatitis B, testing positive in 2016. I’m the executive director and team leader at the Hepatitis Aid Organization civil society organization that is supporting hepatitis elimination in Africa using multidisciplinary partnerships. 

Could you tell me a little bit more about some of your organization’s programs and campaigns that specifically address hepatitis and other health concerns in your community  

Our organization focuses mainly on four issues: advocacy, education, patient support, and research. For Uganda specifically, which is the first country we started working in, we have been able to push for the birth dose. We have been able to do a couple of awareness campaigns, and mobilize communities for uptake of services, testing, and vaccination. We have been able to support the Ministry of Health on capacity building for health workers, specifically those working in maternal health clinics. We have been able to engage cultural leaders for social mobilization. We have been also able to engage religious leaders. I mean it’s quite a lot.  

We have many partnerships in academia, in Africa, in Uganda, in India, and we are trying to see how we can bridge the gap to inform our proposals and decision making. We have initiated the parliamentary health forum on hepatitis in Uganda, which supports hepatitis advocacy and seeing that things are really working on at the parliamentary level. We are also supporting the Ministry of Health in Uganda at the National Technical Working Group, where we have representation. We have a network of patients that we are working on in partnership with the National Organization for People Living with Hepatitis, and we are looking to see how we can support the patients in Uganda better. So, we are doing quite a number of things. We are doing advocacy at the community level, but also on a national level.  

We have been able to push for inclusion of hepatitis services on the Global Fund and PEPFAR (President’s Emergency Plan for AIDS Relief) fund in Uganda, and right now we are pushing for even more funding because previously they started funding the maternal child health testing for pregnant women, but we are now pushing for more than just testing for pregnant women. Also, with the new WHO guidelines on treatment, we are saying that we need to budget for treatment for these mothers. We need to do something, more support. We have also been part of campaigns that have pushed for national domestic funding for hepatitis, so we are doing quite a number.  

My next question is if you could explain some of these partnerships in more detail…  

So, I can give some more light on the partnerships. We are trying to see that our partnerships are diverse in terms of what we are doing with them. We are looking at partnerships with CSO’s (civil society organization) or organizations like ours, mainly to increase our impact on advocacy, but also service delivery. We are part of platforms that are supporting CSO’s that support HIV, making sure that hepatitis is integrated in all activities, all platforms of HIV, and all platforms of non-communicable diseases. We are pushing for integration.  

We have made partnership with the Ministry of Health and we have an MOU with the Ministry of Health in Uganda which is giving us a better position to discuss and negotiate with the government better and support the planning for the hepatitis program, but also to be included in whatever action that takes place in the hepatitis programming in Uganda. Nationally, we have had partnerships with academia as I said, the religious leaders, the cultural leaders, but also the health workers. We are trying to build a network of health workers that are supporting hepatitis in Uganda, because the biggest challenge, one of the challenges we have here is capacity building and we have worked some to build the capacity of the health workers, to build the capacity of the journalists, and to build the capacity of village health workers, who are called the community health workers, but it is not enough. 

So, some of these partnerships have been helping us in that way. Then globally, we are working with other African-based organizations to try and expand our impact as an organization, to learn from the achievements that we have made in Uganda, and to see how we can learn from them and make an impact in these other countries, because if we are to eliminate hepatitis before 2030, we should do it collectively because even if Uganda succeeds and these other countries around us are not succeeding in elimination, then we are doing nothing. For example, Egypt has been able to succeed when it comes to eliminating hepatitis C, but it is the only African country that has been approved or has been accredited as one that has kicked out hepatitis C completely, but that doesn’t count for us who are looking at Africa as a whole or kicking out hepatitis as a global health threat. It doesn’t work when you only have one country out of over 53 countries that is celebrating this, so we are now changing our approach from just looking at Uganda, because hepatitis is not limited by borders. It does not give respect to these borders, so we are trying to see, how do we use the lessons that we have learned, the experience that we have, the networks that we must support other organizations in in Africa or other governments in Africa, to reach the elimination goals. This is where we are now moving this year, pushing hepatitis aid organizations beyond borders and eliminating hepatitis in Africa. This is what we are pushing for.  

You mentioned capacity building as one of the main challenges that you face, so my next question is: what are some other challenges that you face in addressing hepatitis, and other health concerns at the community level, how have you worked to overcome these, and are there any additional resources that would be helpful to have? 

One of the challenges that we have is awareness. The community is not aware. We have political support, but to the extent [we need], no we don’t. The political support that we have is 3 million U.S. dollars. Yes, it is something based on other countries or other African countries, but when it comes to what we are fighting, it is nothing. It is like a mother who is trying to show that they are caring for their family, but they’re only giving one meal. It is really not enough. It is not sufficient to meet the elimination goals. So, we have a very big problem of resources, so we need to boost, or beef-up our resource mobilization for this.  

We have a problem with the capacity in terms of knowledge for the health workers, but also the capacity in terms of the equipment and the technologies that are required to have a very good and strong sufficient response. You find that the technologies that we are using are outdated, we don’t have real time data, and nothing can be done without data, you know? It puts us to the back. We do not have all the data. Even the data we have from the WHO, it is just estimated data, we are using estimates. We need real data. When we talk about patients, we need to know how many patients there are. This will inform our planning. But we don’t have such data.  

Also, we have a big problem with the supply chain for commodities for hepatitis. In Uganda, it has been over 6 months without commodities for hepatitis. It is over a year plus without treatment for hepatitis, and yet we are pushing for 0 transmission. Now, for example, if a mother with hepatitis B goes to a clinic and requires treatment to reduce the risk of transmission, how do we get her treatment in a country where treatment is not available? You know, we are in a country where we do not have a hepatitis C program and yet we are presenting with the hepatitis C patients. How are we going to go about this, you know? There is no commitment over hepatitis C and yet it is treatable.  

So, these are some of the challenges that we have. We also have a problem of sustainability because, as an organization, our sustainability is based on individual gifts from people, people like us who decided to initiate these efforts. We are the ones that have to put in our monies and sometimes it gets extreme and sometimes you have to live a life, you have a family, you know.   

So, these are the challenges. As much as we are making progress, these are things that put us backward. Every step we make, we go backward. Also, one of the things that we believe is very important is awareness creation because when we communicate to the communities, it also communicates to the government, it communicates to everyone. It does not discriminate, and we do not have a behavior change campaign that is targeted to hepatitis. We have seen a lot of success in HIV elimination because of behavior change. So, one of the biggest challenges is that, without communication, without people knowing that there are these services, it creates underutilization, it creates wastage because the services are going to be expired, so these are things that we need to look at. Another challenge that I would look at is integration with other diseases and all that but to be honest, integration is not feasible because when you go to HIV for integration, they have their own interests. Their donors have their own interests. Donors like PEPFAR have their interests and they’re not directed by PEPFAR Uganda, they are directed by PEPFAR in the U.S. So, you find a country like Uganda which is having the anti-homosexual bill. Yes, it is about homosexuality, but you find that it is affecting all other health sectors. It is affecting all other donation avenues. So, these and more have really put us backward to a point that is almost [hard to] recover from.  

So, when it comes to the barrier of awareness, 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. 

The biggest barriers to awareness are resources honestly because with resources, most of these barriers are no more. Then the capacity of the communities you know we have community health workers that we can rely on… they’re sustainable once they get the basics about these diseases. Once you train them on a disease, it is sustainable, but it also requires resources to build their capacity, and yet they are the firsthand persons that we talk to, that our people in the local communities go to for information even before they come to the hospital to the doctor. They know someone who is a community health worker, they first call them and say hey this and this, this person is presenting with this, you know, but the community health workers in Uganda know everything about HIV, everything about malaria, everything about measles, but nothing about hepatitis. … It could be better.  

So, awareness starts with the community health workers?  

Once we empower our communities, they will be the ones to ask for these services. Once we empower them, they will be the whistleblowers. Once we empower the communities, they will be the ones to talk to us and tell us A and B is not doing this. Even the stigma will automatically be fought once we empower the communities because now, they will be informed. 

So, the last question, what are your favorite parts about your job and what got you interested in this work? 

My favorite part of this job is basically networking and meeting new people. Whenever you get to these places, you meet new people and whenever you get calls from people that are inspired by your story, people that believe in what you say, people that keep pushing you to do more and get better, this is the best thing. Whenever you know that you’re doing something that is impacting your community positively. This is the biggest and greatest fulfillment that I have. As I told you earlier, I’ve been working with patients, cancer patients, and have been supporting cancer programs and supporting an HIV program before hepatitis, but I tested positive for hepatitis B in 2016 and when I tested positive, I didn’t know anything about it so this has been my biggest driver, how many people don’t know anything about hepatitis in my community. How many people are misled. How many people don’t have access to the services because they’re extremely expensive, so what can you do you know, and as a businessman when you see a problem, you find opportunity. 

Thank you so much for speaking to me today. I really appreciated you sharing your experiences and perspectives. 

300 Million Reasons, About Hepatitis B, advocacy, HBV, Hepatitis Awareness Month, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Health, Living with Hepatitis B, United States

#justB Storyteller David’s Advocacy Journey

 

 

 

 

 

 

 

 

 

 

David is living with hepatitis B, and he spoke about empathy and mental health as a panelist at the World Hepatitis Summit (WHS) 2024

Another World Hepatitis Summit (WHS) has come and gone, this time in Lisbon, Portugal. I previously attended the 2022 summit in Geneva and spoke during the Youth Can’t-Wait and Closing Sessions. I would like to give my thanks to the wonderful people at the World Hepatitis Alliance, for allowing me to travel and speak at this year’s summit as well.  

I spoke during a newly created session called Hepatitis and Mental Health. During this session, a video I made in collaboration with the WHA last year, was played before I spoke. It is part of the WHA “I can’t wait” series of videos, which showcase patient advocates and their journeys with patient advocacy and why they can’t wait for a world without hepatitis. I, the dedicated and powerful Shabana Begum of the UK, and the courageous and vocal Shaibu Issa of Tanzania are the first to be featured in these videos.  

I can’t wait… these words evoke dire urgency. During this summit, I felt and heard the urgency from many of the speakers, advocates, and attendees. From the opening session, it was emphasized that the world DOES have the tools and resources but DOES NOT have the required amount of political and social will to eliminate viral hepatitis by 2030. The need for person-centered and culturally appropriate approaches as being critically important was also highlighted.  

These declarations capture the moment the viral hepatitis community is currently in. Time is slipping away by the day and the people who suffer from viral hepatitis, hepatitis B and D included, cannot continue to wait in silence as they have been. Deaths from hepatitis B are still alarmingly high each year. These statistics highlight a problem of stigma and discrimination that presents differently depending on where you are located or who you are talking to. Stigma and discrimination can cause mental health problems and prevent millions of people living with hepatitis from finding their voice, feeling comfortable sharing their story, and being diagnosed. Without solving this multi-faceted problem, the goal of eliminating viral hepatitis by 2030 is just an empty platitude. 

Having the privilege and platform to speak about hepatitis and mental health during this summit was very important to me. My struggles with hepatitis B and my mental health struggles are interconnected in so many ways. That is also true for so many other patients who have struggled with poor mental health. Long before I started my patient advocacy journey, I felt voiceless. Long before I ever talked publicly about my mental health struggles, I felt voiceless.  

Empathy is a crucial piece of the puzzle for how we give those who feel voiceless the greatest opportunity to find their voice, regardless of where they are from or the stigmas that surround them. We must be empathetic when creating policies, action plans, and declarations. So many millions of people are left undiagnosed, untreated, and voiceless because of fear of the societal, associative, and personal stigma that they will go through if they seek out a diagnosis or talk about their status openly. There is still so much misinformation surrounding hepatitis and the only feasible way to fight this is by amplifying the voices of those who speak the truth about hepatitis with empathy, cultural sensitivity and appropriate.  

The symptoms of poor mental health exacerbate this feeling of voicelessness. After five years of advocacy, over a decade of therapy, and five years of being on a consistent treatment for my hepatitis B, I still struggle with clinical depression and anxiety. I will live every day with depression and anxiety in varying degrees for the foreseeable future. My mental health started to trend downward late last year. I had to find the strength to start an antidepressant medication and give it an honest try. I can happily say, that today and every day after will mark the longest I’ve been on an antidepressant (almost six months now), and I can report that it is helping me manage my mental health and to continue managing my hepatitis.  

I say all of this to highlight the connection between times in my life where I have actively been taking steps to manage my mental health and my hepatitis B. These periods overlap with each other, and they have one important thing in common. Empathy for myself and others. This is one of the strongest coping tools I have to manage my hepatitis B and my mental health. Patient health outcomes are linked to the state of their mental health and the tools and resources they are given to help manage it.  

After attending this World Hepatitis Summit, I feel a calling to act with more urgency. This isn’t an easy task. For me, it’s one of the most challenging aspects of advocacy. I have such a natural tendency to self-talk in very judgmental and negative terms. I sometimes think I’m a terrible person for not doing more and taking more time to learn how to become a more capable and productive advocate. I ask myself why I’m not having more conversations, learning about others’ perspectives, and potentially teaching someone or setting them on a path of changing their minds about hepatitis and mental health.

The desire to grow more as an advocate and connect more with others is within me, but the key to taking more action is to meet myself where I am currently and to practice self-empathy. When I speak to myself with empathy, kindness, and encouragement, I am much more likely to grow and make a positive change, even though mental health struggles.   

Most people in the world can relate to or know someone who has struggled with their mental health. This commonality between people can be a powerful tool if wielded with empathy instead of fearmongering and focusing on the most rare, violent, and negative aspects of mental health struggles. These stories fill the public, media, social media, and political discourse and create more layers of stigma (public, associative, self, provider). Changing this narrative will be a monumental undertaking but to use one of my favorite quotes, “The best time to start was yesterday. The next best time is today.” 

 

Check out David’s storytelling journey here: https://www.hepbstories.org/justb/david?rq=david

 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Living with Hepatitis B, Uncategorized, United States

Minority Health Awareness Month: Why does hepatitis B disproportionately affect some groups more than others? 

 

 

 

 

 

 

 

 

 

 

 

Hepatitis B is a global public health crisis. While it is heavily underreported across the world, experts estimate that there are approximately 300 million people living with chronic hepatitis B. Anyone can get hepatitis B. The hepatitis B virus does not discriminate. This is why it is crucial for everyone to get tested for hepatitis B at least once in their lifetime and get the hepatitis B vaccine. 

However, some people are at a greater risk for developing chronic hepatitis B than others. This is not necessarily because some people are genetically predisposed to the virus but because of poor awareness and lack of resources to prevent or treat hepatitis B.  It is important to understand that health is influenced by many different factors including genetics, our environment, availability of resources and access to care. To fully understand the reasons behind racial and ethnic disparities in hepatitis B prevalence across the globe, we must understand the social determinants of health associated with hepatitis B testing and care.  

Differences in HBV Genotypes 

Genotypes describe the characteristics of the virus. The hepatitis B virus (HBV) contains many different genotypes, which explains why the virus impacts people in different ways (i.e., how the virus spreads to others, likelihood of developing serious liver disease, etc.). Some genotypes such as genotype A can increase the chances of chronic (long-term) infection. 

Certain HBV genotypes are more common in some regions of the world than others, which may explain why some people are more likely to experience worse health outcomes than others (Sunbul, 2014). 

 Genotype A is commonly found in the African region. Genotypes B and C are found in the Asia Pacific regions. Genotype D is less likely to lead to a chronic infection but can still result in serious liver failure without proper intervention. Genotype D is found mostly in South Asia (Pakistan and India). Source: Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

Social Determinants of Health 

Public health researchers call the economic, cultural and political factors that shape society “social determinants of health,” which go beyond medical care and insurance coverage. Our health is influenced by our access to education, employment opportunities, local, state and national policies, and our neighborhood and environment. (Greene at al., 2017). 

In the global context of hepatitis B prevention and treatment, some groups are at a better advantage than others. Some countries are more technologically advanced with a strong economy. This makes access to testing, vaccine, clinical trials, and treatment options much easier for some populations (though disparities still exist). Political will and access to economic resources impact what public health issues should be prioritized for in many countries. If a country has a poorly maintained economy and access to resources is limited, it is less likely to develop or sustain critical public health programs to prevent or test for hepatitis B or provide proper care for those living with hepatitis B. In some regions, access to schools and education is restricted, which impacts health literacy and access to economic mobility. Poor awareness due to low health literacy and limited knowledge about hepatitis B is usually because of overall education deficiencies. This makes it difficult for people to understand health education if they lack basic literacy skills (i.e., if they cannot read or write). In other regions, health literacy is not prioritized. Some people have better access to tools and resources that help them understand how to navigate the health care system, get medical insurance and make better decisions about their health (e.g., starting treatment or routinely getting ultrasounds to monitor liver function) (Greene et al., 2017). 

In the U. S., hepatitis B is an important health concern for many Asian and African immigrant populations. This is partially due to low or poor vaccination rates in their country of origin (some countries do not have policies on mandatory vaccination, access to adult vaccination or sufficient access to birth dose). While people should be getting screened for hepatitis B during the immigration process, this does not always occur. Immigrant populations also tend to have lower rates of insurance coverage. Many either lack healthcare insurance or do not have adequate insurance.  

Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in other languages, such as Khmer or Mandarin. This makes them more likely to avoid getting care or using preventative services such as hepatitis B screening and vaccination due to fears of high out-of- pocket costs, disruptions in their immigration process and cultural factors. Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in their native languages. 

The Hepatitis B Foundation and the Hep B United Coalition work with local, national, and global partners to address barriers around hepatitis B and liver cancer for impacted communities. Local coalitions such as Hep B United Philadelphia work with community-based organizations like African Family Health Organization (AFAHO), Philadelphia Chinatown Development Corporation (PCDC), and SHAMS Health Clinic to increase uptake of screening and provide education on hepatitis B and liver cancer among Asian and African immigrant communities.  

 

References: 

Greene, K. M., Duffus, W. A., Xing, J., & King, H. (2017). Social Determinants of Health Associated with HBV Testing and Access to Care among Foreign-born Persons Residing in the United States: 2009 – 2012. Journal of health disparities research and practice, 10(2), 1–20. 

Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B, United States

Nurses need to help wipe out chronic hepatitis B, a disease borne by 300 million people

 

 

 

 

 

 

 

 

Nurses such as you and me – yes, that means all nurses (and our welcomed health care counterparts) – likely come across a patient or parent who declines vaccinations for themselves or their children. And it is not uncommon for nurses to be first in line to receive the unfavorable statements refusing these life-sustaining vaccines. 

While every nurse may provide vaccine education at some point in a patient’s life, those in neonatal and maternal-newborn nursing have a greater responsibility with the hepatitis B vaccine. It is for good reason the hep B vaccine is the first immunization given to newborns within 24 hours of birth, followed by a second dose at 1 months, and the third at 6 months. However, communicating those reasons to parents of our newborn patients takes a compassionate, strong and skillful approach. Especially when we are faced with resistance and the unyielding declinations for the hepatitis B vaccine.  

There are various clinical settings and times when nurses can educate new parents and those with children about how the hepatitis B vaccine works and why it is necessary. We have numerous opportunities to identify misconceptions, fears and inaccurate information a parent might have regarding the vaccine. When addressing the highly recommended CDC’s vaccine schedule with parents, the rule of thumb is letting them know to expect their child will get the hep B vaccine series starting at birth. It is typically at this time when pushback from the parents begins to emerge. First and foremost, determining the “why” in what is making the parent hesitant about or declining the hep B vaccine is vital when trying to help them understand the reason vaccination is strongly advised. 

Resistance to hep B vaccination typically relates to not understanding the risks of contracting the virus, a perceived low risk of exposure or safety of the vaccine. Educating parents about complications that acquiring hepatitis B can have on the body can emphasize the vaccine’s purpose. Nurses need to use language that is concise and easy to understand. Nurses can let parents know hepatitis B is a virus that causes inflammation of the liver that damages and compromises its function, which can and often does lead to liver disease and ultimately cancer. Unlike a common bacterial infection that can quickly be treated with antibiotics, acquiring a hepatitis B infection can mean living with a chronic, life-long and potentially life-threatening illness. And the vaccine was established to provide a solution to that problem.  

Parents who perceive a low risk of their child becoming exposed typically minimize the need for the vaccine. A major misconception is that individuals who have hepatitis B have engaged in risky sexual behaviors or are drug users. To counter this impression, we want to make it very clear that hepatitis B can affect anyone. In fact, 40% of people in the U.S. who have a new hepatitis B infection don’t have any known risk factors. It could be helpful to educate parents using real-life scenarios about how the risks are present outside of stigmatized behaviors. For example, educate them that hepatitis B can be spread if their child shares a razor, toothbrush or nail clipper with someone who has the virus. 

If a parent is on the fence about the hep B vaccine, they might come with assumptions rather than questions. They may state, “My baby is too young, he doesn’t have an immune system yet.” You can let them know: “The hep B vaccine is synthetically prepared with small bits of viral protein and does not contain any blood products. This means the vaccine contains no actual virus and cannot infect anyone.” Educating parents about what the vaccine is will help explain how it actually works. You could say: “By introducing a small part of the virus, the body will learn to recognize the virus in case of future exposures and will protect someone for a lifetime.” 

Parents will often raise safety concerns about the vaccine and the erroneous allegations that it can cause autism. This misconception is tied to a preservative (thimerosal) once used in vaccines and this misinformation still lingers on social media. The most effective way to communicate with parents who harbor this misguided belief is by emphasizing the information from trusted and reliable national public health agencies. Nurses could inform parents that thimerosal is no longer used in the hepatitis B vaccine (or any other childhood vaccine except flu), and a page on the Children’s Hospital of Philadelphia website (June 1, 2021, https://www.chop.edu/centers-programs/vaccine-education-center/vaccine-ingredients/thimerosal) explains why thimerosal in vaccines isn’t harmful. Also, the single study suggesting that link has been discredited and withdrawn from publication, and the physician-author has been banned from practicing medicine (The New York Times, May 24, 2010, https://www.nytimes.com/2010/05/25/health/policy/25autism.html). 

As for the hepatitis B vaccine, as you can read on the Hepatitis B Foundation’s website, “The most highly respected public health agencies and professional medical associations have rigorously studied the safety of the hepatitis B vaccine” (https://www.hepb.org/prevention-and-diagnosis/vaccination/vaccine-safety/). 

Hep B is known as a silent killer, and it is a vaccine-preventable disease at that. For nurses, addressing parents’ hesitancy and navigating a “no” for the hep B vaccine is priority when striving for maximum compliance. Nurses equipped with knowing how to voice the facts and recommendations in a way that doesn’t make parents feel argued with support a greater chance at swaying the decision to vaccinate their children. Using examples that parents can connect to helps achieve a level of understanding that can’t be reached with heavy scientific and textbook language. At the end of the day, if you’ve exhausted all resources and information and a parent still declines the hep B vaccine, simply document and hope for reconsideration down the road. 

This blog post is written by Lacey Hempeler, RN. 

Note: The Hepatitis B Foundation’s consult team can be reached via info@hepb.org. 

  

HBV, Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

You Cannot Live Without Your Liver: Celebrating World Liver Day

What is your body’s largest internal organ that filters and extracts toxins from your blood and can even regenerate on its own?  

The liver! 

Although the liver may not be discussed as frequently as the brain or heart, the liver is an incredibly critical part of everyday life and plays a role in metabolism, digestion, immunity, and overall keeping the body healthy. On April 19th we celebrate World Liver Day and honor everything it does for our bodies. Just some of the liver’s major roles include the production of bile (which helps break down fats during digestion), detoxification of the blood supply, and storage of essential vitamins (Kalra et al., 2023). The complex involvement of the liver in all these functions means that any injury or damage can cause a cascade of negative consequences. That being said, there are many useful preventative and curative measures that people can utilize to heal the liver. In this post, we gained insight from liver experts, clinicians, and people with lived experience to highlight the good, the bad, and the healthy for all things liver! 

Liver Disease 

So, what exactly causes someone to get a liver disease?  

It all boils down to tissue damage which can be caused by viral infections, excessive alcohol consumption and fat intake, autoimmune disease, and more. 

Viral infections 

Of course, one of the most common diseases that affects the liver is hepatitis in all its forms. Hepatitis translates to inflammation of the liver, which can be caused by viral infections, excessive alcohol consumption, or autoimmune diseases. Regarding viral infections there are five different hepatitis viruses (A, B, C, D, and E) that can damage the liver. Dr. Su Wang, Senior Advisor for Global Health for the Hepatitis B Foundation and health care provider, explains the mechanism for viral liver damage. 

“The virus resides and replicates in the liver and over time can cause chronic inflammation which can lead to fibrosis [mild scarring] and even progress to cirrhosis [severe scarring] and liver cancer.” 

Dr. Robert Gish, hepatologist and Medical Director for the Hepatitis B Foundation, highlights how the different viruses affect the liver. 

“Hepatitis A only causes acute infections, meaning the body can recover eventually, whereas hepatitis B, C, D, and E can cause chronic infections that are more likely to lead to long-term damage if not managed.” 

The immune response from liver cells while trying to protect against hepatitis virus can lead to long term inflammation and damage of cells. This causes fibrous connective tissue to develop within the organ as a response to injury and is often one of the first steps towards liver disease.  

Alcohol and Diet 

Excessive fibrosis development and scarring of the liver can lead to a disease called cirrhosis which can also come from excessive alcohol consumption. Since your liver filters toxins out of the blood, the process of filtering alcohol out of the blood causes injury and cell death. Read more about alcohol’s effect on the liver in this blog post.  

Another common method of liver damage is through dietary fat deposits that accumulate in the liver referred to as steatosis. This can lead to diseases known as metabolic-associated steatotic liver disease (MASLD), alcoholic steatotic liver disease (MetALD), and metabolic-associated steatohepatitis (MASH). Wayne Eskridge, CEO of the Fatty Liver Foundation explains more about these common liver diseases and how to recognize their presence. 

“Metabolic-associated steatotic liver disease (MASLD) is the new term for nonalcoholic fatty liver disease (NAFLD). It is characterized by excess fat in the liver not caused by excessive alcohol consumption. 

Alcoholic-associated steatotic liver disease (MetALD) is the new term for what was previously known as alcoholic fatty liver disease (AFLD). It is caused by heavy alcohol use. 

The stages of MASLD are as follows: 

  1. Simple steatosis – Fat accumulation in the liver, but no inflammation or damage to liver cells. 
  2. Metabolic associated steatohepatitis (MASH) – Inflammation and damage to liver cells, along with fat accumulation. MASH can lead to cirrhosis and liver failure. 
  3. Cirrhosis – Scarring of the liver due to chronic inflammation and damage. Cirrhosis can lead to liver failure and other complications, such as portal hypertension (high blood pressure in the portal vein) and ascites (fluid buildup in the abdomen).” 

MASLD and MetALD are becoming more common in the general population, particularly MASLD, likely becasue of the increasing prevalence of obesity, diabetes due to a sedentary lifestyle, and eating diets that are high in processed foods, sugary drinks, and unhealthy fats that can promote liver fat accumulation. 

Less Common Conditions 

In addition to the more common liver diseases, there are some lesser-known conditions that are genetic and autoimmune. Wayne discusses four that he identifies as important for people to know. 

Primary Biliary Cholangitis (PBC) – A chronic autoimmune disease that affects the bile ducts in the liver, leading to inflammation and damage 

Autoimmune hepatitis – This is a chronic inflammatory condition where the immune system attacks the liver, leading to liver inflammation and damage 

Hemochromatosis – This is a genetic disorder where the body absorbs too much iron, leading to iron overload in the liver and other organs (Read blog post about hemochromatosis here) 

Wilson’s Disease – A rare inherited disorder that causes copper to accumulate in the liver, brain, and other vital organs 

All liver diseases mentioned in this section can cause excessive stress and changes to the liver tissue, which can lead to liver cancer development. It is important to note though, that fibrosis is reversible and there are things you can do to maintain your liver health to avoid advanced disease. 

Healing the Liver 

The liver can be negatively affected in many ways, but the good news is that the liver is an incredibly resilient organ and there are many ways to heal the liver.  

Treatment 

Clinicians and patients agree, the most important step to healing the liver from a viral infection is treatment. Dr. Gish states that for hepatitis C, “cure with direct-acting antivirals is the first step” and hepatitis C lived experience expert, Courtney Downs, agrees:  

“To heal your liver while living with hepatitis C, prompt treatment is key. Early treatment enhances a person’s overall health and leads to numerous benefits such as: improved quality of life, decreased chances of exposing others, regression of liver fibrosis and a reduction in the risk of liver failure and liver cancer – hepatocellular carcinoma (HCC)” 

Although there is not a cure for hepatitis B like there is for hepatitis C, there are many available and accessible treatments for hepatitis B that can stop viral replication and liver damage. Learn more about available hepatitis B treatment options here. 

Dr. Wang highlights additional management considerations including asking for lab tests to measure “viral load and liver enzymes at least once a year if not more often” and recommends having discussions with your healthcare provider. “You want to ask about liver cancer screening as well and have an Alpha Fetoprotein (AFP) test and ultrasound ordered”. These steps will help to monitor the liver status and prevent progression of liver damage to irreversible stages of cirrhosis and cancer. 

In terms of fatty liver diseases, there may be medications that can be prescribed to reduce liver fat or improve liver function and in severe cases, a liver transplant may be necessary. 

Lifestyle 

There are a few lifestyle changes that all people can make to reduce the negative effects of liver disease and overall improve liver health regardless of disease status, recommended by Mr. Eskridge and Dr. Gish: 

  1. Limiting Alcohol Consumption – Alcohol use at any level can put greater stress on the liver. Rethink the drink! 
  2. Dietary Changes – Focus on fruits, vegetables, whole grains, unsaturated fats, and lean protein. Limit processed foods, sugary drinks, and saturated or trans fats. 
  3. Increasing Exercise – Aim for at least 150 minutes of moderate-intensity exercise per week. 

Courtney provides her insight as someone with experience living with a liver disease. 

“The liver has the unique capacity to regenerate once no more virus is detected and if no new damage occurs. Optimal nutrition and alcohol avoidance are vital. If abstinence isn’t feasible, reducing alcohol and consuming lean protein can aid liver repair. Also, getting vaccinated against hepatitis A and B is very important to protect your liver.” 

There are safe and effective vaccines to prevent hepatitis A and B infections. This is an easy step to protect your liver from future damage and prevent simultaneous liver disease while the liver is in a weakened state. Learn more about the hepatitis B vaccine here. 

Field experts interviewed for this post highlighted their favorite fact about the liver and why World Liver Day is important to them: 

 

 

 

 

Dr. Robert Gish 

“You cannot live without your liver.” 

“Raising awareness will change human behavior and lead to better liver health.” 

 

 

 

 

Dr. Su Wang 

“The liver can regenerate, and fibrosis can be reversible. It is such an important organ and makes almost all the important proteins in our body but also detoxifies.” 

“The liver is an organ that doesn’t get enough attention given its importance and because of that, liver diseases are often neglected. Thus, this day is even more important to increase awareness and promote liver health.” 

 

 

 

 

Wayne Eskridge 

“Education is the only real answer to stemming the tide of this disease (MASLD/MetALD/MASH). Drug therapy is not sustainable on a population basis so people must learn to develop better habits.” 

Hepatitis C lived experience expert, Courtney, expressed advice for anyone living with hepatitis C or other liver diseases: 

 

 

 

 

Courtney Downs 

“You are not alone. There is a whole community of individuals that have cured or cleared their hepatitis C. There are clinicians, support staff, advocates, coalitions, and organizations that consist of some of the most amazing people I have ever met personally and/or professionally. They work tirelessly advocating to remove barriers and challenge the stigma that surrounds viral hepatitis. They don’t judge and they truly embrace radical love and acceptance. There is a cure and there are people who will help you get that cure no matter what your circumstances are. So, my advice would be to get tested, get treated, and get vaccinated.” 

Courtney said it best. Celebrate World Liver Day on April 19th and every day.

Get tested/treated/vaccinated today! 

 

References:  

Kalra A, Yetiskul E, Wehrle CJ, et al. Physiology, Liver. [Updated 2023 May 1]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK535438/ 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B, United States

Podcast Recap: Barriers to Liver Cancer Surveillance

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent episode on the B Heppy podcast, Dr. Neehar Parikh, a hepatologist at the University of Michigan, discussed the link between hepatitis B and liver cancer, barriers to screening for liver cancer, and screening methods for liver cancer.  

Hepatitis B and Liver Cancer 

Most people are not unaware of the link between hepatitis B and liver cancer. Hepatitis B can cause liver cancer, especially when left untreated or unmonitored. The hepatitis B virus (HBV) can cause serious damage to liver tissue and result in the growth of tumors that may become dangerous over time. This is why doctors recommend patients living with hepatitis B to continue to monitor their liver health and take treatment if necessary to prevent the progression to liver cancer. The best way to check for cancer is by screening. It is recommended to get liver cancer screening (usually through an ultrasound that looks at damaged tissue or abnormal cell growth) once every six months.  

Barriers to Liver Cancer Screening 

There are several barriers to liver cancer screening at the provider and patient levels. For providers, many times liver cancer screening is not prioritized when compared to other types of cancer screening programs. This is partially due to the limited evidence on liver cancer screening benefits (even though data exists to show that liver cancer screening is valuable, it’s not as strong as the evidence used to back up other cancer screening initiatives like colonoscopy or breast cancer screening). This makes liver cancer a less valuable option for providers to recommend to their patients. Providers are also not always following recommendations or guidelines from liver societies on hepatitis B management and liver cancer surveillance. Liver cancer screening is also not included in the United States Preventative Services Taskforce (USPSTF), which is a tool used by most providers in the U.S. to recommend preventative services to their patients.  

From the patient’s perspective, liver cancer screening is not always discussed by providers. For people living with chronic hepatitis B, many are not aware of the link between the virus and liver cancer. They are less likely to ask more questions about monitoring their liver health if the option or recommendation for screening is never brought up in a conversation with their providers. For many people who need liver cancer screening, they have limited access to care (loss to follow-up, lack of health insurance coverage, etc.). Limitations with the electronic health records (EHR) system is a challenge for patients who may find it difficult to schedule appointments (sometimes patients are not sent reminders to get ultrasounds). 

For people living with hepatitis B, liver cancer is a serious health risk. It is crucial to make sure patients are aware of the link between hepatitis B and liver cancer, the role of screening in early diagnosis and prevention of advanced tumors, and the importance of monitoring liver health as recommended by liver societies and guidelines on liver cancer surveillance.  

Listen to Dr. Parikh’s full episode on B Heppy here: https://bheppy.buzzsprout.com/1729790/14248470-barriers-to-liver-cancer-surveillance-with-dr-neehar-parikh. 

Additionally, the Hepatitis B Foundation recently launched a Learn the Link campaign to help spread information on the link between hepatitis B and liver cancer. View all about the campaign and get access to free resources here.: https://www.hepb.org/research-and-programs/liver/hbv-liver-cancer-connection/ 

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

Read about the Hep B Foundation’s Newly Launched Learn the Link Campaign with Dung Hua of the Vital Access Care Foundation

This month, we spoke with Dung Hua of the Vital Access Care Foundation, formerly known as the Vietnamese American Cancer Foundation. Dung and her team continuously work to address the needs of the Vietnamese community in Orange County, California and the surrounding areas. Dung spoke to us about her experiences addressing hepatitis B and liver cancer in this community, as well as her contribution to the Learn the Link campaign, which officially launches in February 2024. Dung shared the challenges she faces, her rewarding experiences and the many ways she works to connect with and educate her community. 

The Learn the Link campaign was created to raise awareness about the link between chronic hepatitis B infection and liver cancer in a culturally appropriate way for communities that are most impacted. It was informed by speaking directly with community members and created with their needs centered and prioritized. The Hepatitis B Foundation held focus groups and assembled an advisory committee to learn about the needs and concerns of the communities for which the educational materials were being created to ensure that the materials were informative and sensitive to the traditions and norms of different cultures.  

Can you introduce yourself and your organization? 

My name is Dung and I work for the Vital Access Care Foundation. We recently underwent a name change because we expanded our services to not only focus on cancer, though The Cancer Continuum of Care, and our liver cancer and hepatitis B programs are the primary focus. We started in 1998 and provided general cancer assistance services, which later developed into a breast cancer focus. In 2003, we started the liver and hepatitis B programs. One of our founders is an oncologist and the other is a gastroenterologist who provides consultation and guidance for our hepatitis B and liver cancer programs. 

Can you tell me about your organization’s programs that address hepatitis B and liver cancer directly? 

Our hepatitis B and liver cancer programs focus on the Vietnamese community. We provide outreach, education, patient navigation and screening. We start with education because many people in this population are not aware of hepatitis B. We host community screenings and bring screenings into the community at churches and cultural events. People are more willing to get screened when we bring screenings to these events. If someone tests positive for hepatitis B, we provide patient navigation and linkage to care. If someone needs to be vaccinated, we provide guidance to link people to the vaccine. If a case is more complicated, we consult with a board member who can provide a professional consultation at no cost. During the pandemic, we tried to tie hepatitis B to COVID-19 and encourage people to get the COVID-19 vaccine and a hepatitis B screen at the same time. We leveraged our hepatitis B vaccine experience and surprisingly, a lot of people were willing to “get poked” twice in one day. 

Can you tell me about the community that your organization serves? 

We focus on the Vietnamese American community in Orange County. This community consists of  immigrants and refugees. In this community, there is still a lot of stigma around hepatitis B. Many people still believe that you can get hepatitis B from sharing a meal with people who are positive. In the Vietnamese community, there’s a saying: “If you sweep the floor, then you find garbage,” which is an idiom for avoiding the doctor; if you don’t go to the doctor, then you won’t know you’re sick. Culturally, you only share what is good. There’s a stigma with seeking help. You’re not supposed to share that you’re weak or struggle, which can lead people to internalize their pain. 

In addition to stigma, many people deal with undiagnosed mental health issues and the challenges of moving to a new country. This community also has lower rates of insurance coverage, which can make receiving routine medical care difficult. The Asian community also deals with the model minority misconception, which can be harmful because many people stereotype Asian people as well educated with a stable income, which isn’t always true.  

Many of the people we serve either speak limited English or no English at all. When people come to the United States (US), they need to immediately find a job and are often classified as low skilled workers. It’s hard for recent immigrants and refugees to have upward mobility. However, many people are motivated by creating better opportunities for their family and children.  

What are some challenges you face in addressing your community’s health concerns? 

The biggest challenges are stigma around disease and having culturally and linguistically appropriate materials. Languages are complicated. Different waves of immigration affect the way that you can communicate with people because languages change over time, which means finding a balance between older and newer languages and dialects is important. It continues to be a learning process for me, as I am exposed more and more to people in my community. It’s important and difficult to be responsive to stigma and all language and cultural barriers, but it is also the most rewarding part of the work.  

Why do you think that hepatitis B and liver cancer educational materials are so important for your community? 

They’re important because knowledge is power. The key to improving is understanding and knowledge, which comes from education. People won’t know what’s best for them if they don’t know the information, which needs to be reinforced through repetition. If people do things and they don’t understand why they are doing them, the behavior won’t last. But if they do understand, they can continue those behaviors and help to spread that information to others. 

What was your experience facilitating the focus groups and serving on the advisory committee that informed the Learn the Link campaign? 

I was there to support and provide observation of the focus group. What I remember is that the community members were very engaged. They have personal experience with hepatitis, which empowered them to engage more. It was a safe space for them to provide feedback. It was empowering for them to be a part of the process and to realize that they are being listened to. The effort of this project to create culturally appropriate materials and seek out feedback from this community allowed people to feel like they made a meaningful contribution to something important. 

While serving on the advisory committee, I remember a number of us were brought together from many different communities and we provided our thoughts and feedback on the project. I enjoyed the opportunity to hear the needs, concerns, and feedback from communities that we don’t typically work with. I found out that many things are similar among diverse communities and it was helpful for me to have the opportunity to learn more about other communities. Seeing everyone at the table providing their perspectives and hearing about the commonalities and the uniqueness was a very interesting experience. 

Why is it important that organizations speak directly with community members when creating campaigns like “Learn the Link”? 

It’s important for any campaign or activity to focus on the community. To be responsive to the community, we must listen to them. We don’t want to create something that we think is the best but doesn’t work for the people that it’s supposed to work for. That direct connection and relationship that allows community members to feel comfortable sharing direct feedback is the key to successful outreach and education.  

What is the most effective way for organizations to engage with your community? 

The most effective way to engage with the community is meeting them where they are. Being willing to go out of the way and find community members, and being open to understanding their needs and concerns is important. We can’t just work 9-5, we have to go out and find them in the community outside of regular working hours. We try to meet community members at flexible hours, host community meetings on the weekends, meet them at the temple or meet them at the park. We try to listen, understand and build rapport.  

Understanding the cultural and generation differences is important as well. For the Vietnamese population specifically, word-of-mouth is powerful. Information spreads in the community through word-of-mouth and can spread like wildfire.  

Connecting with community leaders and other people and organizations who work with the community directly is another way to connect with people. This stems from the immigrant and refugee background; people who lived through the war have a hard time trusting public entities but have trust in the people that they’ve built a rapport with. 

Do you have any final thoughts or comments about the “Learn the Link” campaign and its potential to improve the health practices of the people in your community? Are there any further materials you hope to see in the future? 

I checked out the materials when they were launched and pulled materials to show to a new employee, and I noticed that all materials were in English. When all the translations are available, it will be great to share with not only the community, but with people who work with the community as well. Hepatitis B may not be people’s priority, but with promotion, these materials can remind people that this silent killer is still around and there are resources available.  

What was your experience in helping to review and edit one of the final peer-reviewed manuscripts that will be submitted for publication from this project? 

There were a lot of words to read! Attending the advisory meetings, attending the focus groups, and reading the manuscript was spread out over a long period of time. But it was great to read the summary of all of the work that has been done. It was a nice refresher and I enjoyed reading quotes that resonated with me personally. Other communities have a lot of things in common with the Vietnamese community. It’s very exciting to collaborate together, since we are all doing this work.  

Uncategorized

Storyteller Insights: Cosmin’s Story

My name is Cosmin, and I was born in Romania. When I was just one year old, I was diagnosed with hepatitis B. At the time of my diagnosis, I showed no symptoms of the virus. There was no history of hepatitis B in my family, and my mother had not been exposed to the virus. Moreover, I have a sister who, like me, was unvaccinated for hepatitis B, and despite our childhood wrestling matches, she was never exposed to hepatitis B. Due to my diagnosis, I had frequent visits to the hospital during my childhood, for regular medical check-ups. My parents made every effort to seek treatment at the major medical centers available at the time.  

Unfortunately, the atmosphere in Romanian hospitals after the revolution was not very welcoming, especially for a child. I’ll admit that fear nestled deep within my young heart, but my parents, like guardian angels, surrounded me with their unwavering protection. They whispered soothing words of assurance, promising me that everything would be all right. However, the enigma of hepatitis B remained shrouded in silence during those days, leaving my young mind with persisting questions. I believed my parents with all my heart when they told me I would be okay, but the puzzle of our frequent hospital visits still perplexed me. Why, I wondered, did we keep returning to those sterile corridors if everything truly was fine? The answers remained hidden beneath their loving care, and I clung to their promises, finding consolation in their presence, even as the mysteries of life unraveled with time.  

In the shadowy recesses of my past, there lies a time I seldom revisit. My mother was the one who often accompanied me to the hospital because my father had to work. Our hospital visits in the capital demanded financial resources, highlighting the challenges we faced. As a child, I grew up with the routine of frequent hospital visits, where they regularly took my blood. It felt like a recurring obligation, similar to visiting a distant and unfamiliar relative, but one I had to embrace. My parents, too, sought solace in uncharted waters. They explored every avenue, from natural remedies to unorthodox methods, driven by a love that knew no bounds. I found myself in a two-year treatment with interferon. At that point, the relentless cycle of medical tests had left me exhausted, and the idea of undergoing liver biopsies filled me with dread. Deep inside, I yearned to remain as I was, feeling as though they were slowly claiming every part of me, piece by piece, while I longed for nothing more than some moments of peace. I have some blurry memories of that time. One year, it demanded three injections per week, and the next, two. Maybe my mind protected me by hiding some of the memories. 

Amidst the haze of those Interferon days, there is one memory that refuses to fade—the memory of my liver biopsies. In a time when bravery was my silent ally, I mustered the courage to face those procedures without revealing the fear that coursed through me. During my first liver biopsy, I wasn’t fully anesthetized when they brought me into the operating room, leaving me incredibly vulnerable. After the procedure, I found myself rushing to get up, eager to demonstrate my resilience, but regrettably, this impulsiveness resulted in subsequent admission to intensive care. 

 

Adverse childhood experiences, including medical interventions such as three liver biopsies in my case, can deeply affect a child, leaving enduring effects that extend far beyond the actual events. These circumstances can ignite a sense of heightened vigilance, as these patterns tend to resurface in different life situations. This ongoing state of hypervigilance becomes a means of staying prepared for the possibility of similar challenges in the future. From a tender age, my path was shaped by experiences that left indelible marks on my heart. It wasn’t a childhood like others, filled with carefree days. Instead, it was a period marked by endless medical procedures and tests that sought to reclaim my health. As a child, my deepest desire was simply to experience a childhood unburdened by the weight of medical interventions. Considering these personal aspects, I’ve held a deep desire to work in this field since my childhood. After all those challenging experiences, my test results improved, allowing me to finally escape the frequent hospital visits and unpleasant procedures. 

Yet, as one chapter closed, another unfolded. Not long after my own medical journey, my mother began to confront her own health challenges. The journey of my mother took a challenging turn after a surgery that left her grappling with long-term issues. Antibiotic-resistant infections became unwelcome companions on her path, and they ushered in a series of surgeries that stretched across two decades—more than one hundred procedures in total. These infections were presented as recurring pus collections, necessitating surgical intervention. I remember those countless moments when I anxiously waited for my mother to awaken from anesthesia, my heart heavy with worry. 

The dream of attending medical school burned with me for years, but I gave up at the last moment, especially due to my mother’s health. I opted for a shorter program in dental technology. In an effort to be near my family, I temporarily shelved my ambitions. 

Amid life’s unpredictable twists, fate has gracefully choreographed wonder moments for my soul. Along this magical journey, I encountered my future wife, a captivating soul whose heart brimmed with boundless kindness. Her presence not only brought love into my life but also offered unwavering support and endless affection, filling my days with a profound sense of meaning, romance, and wonder. From this magical love story, our precious girl comes into our lives. Initially, I felt content and excited with my work, but deep down, it was more of a compulsion, and subconsciously, I realized it wasn’t what I truly wanted. In addition to my mother’s health issues, I faced a tried period while undergoing medical tests for hepatitis B and later for hepatitis Delta, receiving results that didn’t provide the reassurance I had hoped for. 

Shortly thereafter, I embarked on another chapter in my medical journey, another two years of Interferon treatment. Those were arduous times, marked by physical and emotional trials. Through it all, my wife remained my unwavering pillar of strength. Her support was a beacon of light in the darkness that seemed to loom. During that time, our sweet girl was quite young, and I am certain it must have been a challenging time for my wife. Sincerely, the weight of the situation often overwhelmed me. 

 

Behind the backdrop of these challenging events, my mother remained a beacon of optimism. Despite her health problems and the relentless complications that plagued her, she carried herself with unwavering hope. Sadly, at the tender age of 49, my mother left this world, leaving me with a plethora of unanswered questions. This sad moment with my mother happened a few months after I completed interferon treatment. 

In the aftermath of those challenging times, a dormant dream from my childhood began to stir within me. I summoned the courage to reconnect with the aspirations that had been shelved for so long. It was a journey into the depths of my own emotions, and it led me to a profound realization. I decided to embark on a path that related to my heart—a journey into the field of hepatitis B. It was a choice fueled by empathy, born from my own trials and the desire to make a meaningful impact in the lives of others facing similar struggles. In this newfound purpose, I unearthed not just my cherished childhood dream but also a profound calling. It’s a path that allows me to pay tribute to my past and to perpetuate the strength and empathy that have been the pillars of my personal journey. 

In 2019, I made the decision to launch an initiative, driven by my desire to share a part of the story I have shared above. It was essential for me to be transparent about my intentions and the specific things I mentioned, as my primary goal was to provide support to people with hepatitis B. As a result, I had the honor of connecting with numerous people with hepatitis B worldwide and with dedicated professionals in the field. 

My open-mindedness, curiosity, and unconventional approach were valuable assets, as they led me to encounter my mentors, Carol Brosgart, Robert Gish, and Francesco Negro. I feel profoundly fortunate to have had these esteemed professors in my life, as their inspiration and guidance played a pivotal role in my relentless pursuit of answers to my research questions. This field unquestionably demands unwavering self-belief to navigate successfully and being connected with my mentors enabled me to give my best as a research scientist. Having carried the knowledge that my mother remained unexposed to hepatitis B throughout my upbringing holds profound importance in the context of my project. All information turns into data, and some of the data becomes immunological and knowledge features for me. Given the challenges I’ve faced, I take immense pride in my project, considering it a significant achievement regardless of how its outcomes are judged. I made the conscious decision to share my personal dataset publicly because my primary objective revolves around comprehending specific facets of these infections in newborns, with the goal of preventing their occurrence.  

This story is not easy for me to write, but I’ve made the choice to share it, nonetheless. In my journey, I’ve to embrace my own flaws and imperfections, recognizing that they are threads of my humanity. Through this acceptance, I have the strength to learn from my experiences, and with each lesson, I strive to craft a more refined version of myself. 

I would like sincerely to express my heartfelt gratitude to my beloved wife, Irina, my cherished family, my wise mentors, and all the wonderful individuals who wholeheartedly supported me throughout this project. I am deeply thankful to the Hepatitis B Foundation for their invaluable support on this journey. I am also appreciative of the courage shown by both myself and my dear mother in facing these challenging experiences and for providing medical data. 

At the heart of this narrative, there was a fervent wish that certain aspects of these infections would become better understood. Anyone who might have the misfortune to be exposed to hepatitis B deserves respect and compassion. Behind all the values in hepatitis B tests, there are emotions. Every person affected by hepatitis B needs more- than just medical data: they need information that can empower them to face their journey with resilience and hope. 

 

A collection of photographs shared by Cosmin:

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

CHIPO Partner Highlight: Community Vision Group

 

 

 

 

 

 

 

 

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that was co-founded and is led by the Hepatitis B Foundation. CHIPO is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past two years, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care.

This month, we spoke with Richard Makhenjera of Community Vision Group (CVG) Malawi. CVG is dedicated to advancing a poverty-free society where children can live to their full potential by helping transform communities through shared responsibility. They have multiple programs geared towards improving the overall health of children and their families in Malawi and Cameroon. The Hepatitis B Campaign started in 2021 and is one of their health initiatives focused on raising awareness of hepatitis B in communities of Malawi and Cameroon. According to the Coalition for Global Hepatitis Elimination, the estimated prevalence of hepatitis B is 8.39% in Malawi and 4.22% in Cameroon. Richard highlighted some of the organization’s ongoing work to decrease the burden of hepatitis B, barriers to achieving this goal, and his recent experiences at the African Hepatitis Summit that took place in Abuja, Nigeria in October of this year.

Could you please introduce yourself and your organization?

My name is Richard Makhenjera. I work with Community Vision Group Malawi as Program Administrator and Board Member. Community Vision Group (CVG) is a non-governmental organization which is registered in Cameroon, UK, and Malawi.

Could you tell me a little bit about what some of Community Vision Group’s programs are that specifically address hepatitis and other health concerns?

According to a 2022 Chiwindi Survey done in Karonga and Lilongwe, 95% of those interviewed who were living with hepatitis B were not aware of their hepatitis B status (Riches et al., 2023). This shows the gap in awareness. Community Vision Group is addressing hepatitis concerns in Africa, particularly in the context of Malawi, through engaging the public during major hepatitis-related events including World Hepatitis Day, outreach to schools and churches, targeted outreach programs to villages, and engaging in hepatitis B screening.

What is the main geographic area in which Community Vision Group works?

There are twelve districts in Malawi. Currently, we are focusing  in Zomba district and surrounding areas as our catchment areas with hope that we can grow and move across the country of Malawi.

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?

The biggest challenge at hand is to take hepatitis messages to the larger masses since our capacity is small in both human and financial resources. The other challenge is reception of messages regarding hepatitis. This is because of both religious and cultural beliefs where some people do not even want to hear any message to do with hepatitis because it is highly linked or related to HIV/ AIDS. There is also resistance when it comes to receiving medical care for those living with hepatitis, as some of them resort to going for traditional healing remedies which can be very dangerous to their health. More awareness work needs to be done.

Additional resources would be very helpful so that CVG can reach the communities with these messages. Examples of these resources would be funding, training materials, printed literature on hepatitis B to distribute to both urban and rural areas, testing kits, and of course availability of adequate health workers in rural hospitals. There are a few projects that would benefit from these additional resources. The first would be to create both electronic and print media so that people are able to access the messages easily. Second, it would help to continue with follow up on those who have tested positive and see if they are keeping up with the counsel given to them by the medical people. Finally, linking suspected cases to appropriate medical centers for testing confirmation with patient consent is another area that could benefit from support.

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

For Africa, particularly Malawi, the greatest barrier is traditional beliefs (cultural and religious). This is a very serious problem which is the root of most other identified barriers. This is a challenge which requires more awareness for people to change their perception so that they can receive messages related to hepatitis. I think we need to keep engaging the government authorities so that they introduce policies which motivate people to go for screening, and ensure that those found hepatitis B-positive start receiving medical care immediately. The absence of screening centers and medical care givers in rural areas is also another big barrier.

What are your favorite parts about your job?

More of my work in CVG is that of social work which is to engage with the masses in communities. I feel good when people get the right message on certain life-threatening issues and see them responding positively to the message.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among those in Africa?

For Africa, we are always at a disadvantage in several areas. Our medical facilities are not that user-friendly, and some areas do not even have access to medical facilities. It also takes time for people to get the right information on life-threatening issues. The absence of well-qualified medical doctors in rural medical centers or hospitals is also a threat to our health system. If we in Africa could address these health disparities, Africa would be safe for her citizens.

Can you share a little bit about your recent experience at the African Hepatitis Summit and how that meeting has helped advance your organization’s efforts?

The African Hepatitis Summit provided a platform for me to increase my understanding of viral hepatitis in my capacity as a social and community worker who directly spends more time with the people who have little or no knowledge of hepatitis. After the summit I felt more energized to increase the awareness campaign and other interventions so that this virus is completely eliminated in our communities. As CVG Malawi, this summit is indeed an eye opener as it has added to our intellectual resources and now, we must implement the new ideas learned at the Summit. 

I also attended a presentation from Confidence Nchinda, Program Administrator for Community Vision Group Cameroon, on “The Importance of Mother-to-Child Prevention : Perspectives of CVG Intervention in Cameroon.” She spoke from her personal experience with concerns during pregnancy about mother to child transmission (MTCT). She further presented on what CVG does in Cameroon so that there is no transmission from pregnant mothers to their children. For example, they do radio talks and outreach to churches, especially targeting women-led associations. They also engage in talks with pregnant women during antenatal care (ANC) visits in health centers. On radio talks their emphasis is on screening of pregnant women and postpartum periods. At CVG in Cameroon they also have priority actions for the prevention of MTCT. For example, mandatory antenatal hepatitis B surface antigen screening – thus the ongoing program, linkage to care and support for those testing positive to further reduce risk of perinatal transmission – of course, this is yet to start depending on resource availability.

View Hepatitis B Foundation toolkit on preventing MTCT here!

Thank you to Richard for taking the time to discuss CVG’s important work and to the rest of the staff and volunteers for their efforts to reduce the burden of hepatitis B in Africa! Check out pictures of CVG in action below!

Confidence Nchinda from Community Vision Group Cameroon presenting during the African Hepatitis Summit

 

 

 

 

 

 

 

 

 

CVG member raising awareness about hepatitis B in their community.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Riches, N., Njawala, T., Thom, N. J., Mkandawire, C., Mzumara, W., Phiri, F. P., Banda, L., Stanley, A. J., MacPherson, P., Stockdale, A., Crampin, A. C., & Nkoka, O. (2023). P23 The chiwindi study: results from a community-based hepatitis B serosurvey in Karonga, Malawi. Poster Presentations. https://doi.org/10.1136/gutjnl-2023-bsg.96

Baruch S. Blumberg Institute