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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. 

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/ 

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

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Research, Hepatitis B Treatment, Hepatitis D Drug Development, United States

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

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

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

Complete, Functional, and Partial Cure 

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

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

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

The progress on the cure: 

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

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

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

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

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

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

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

 

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

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

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

CHIPO Partner Highlight: Falcons Health Foundation of Accra, Ghana

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that was co-founded and is led by the Hepatitis B Foundation. CHIPO is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care.  This month, we spoke with Samuel Addai of the Falcons Health Foundation (FHF) based in Accra, Ghana. Samuel and his team continuously work to reduce the disease burden of viral hepatitis B and C throughout the country. Concerning hepatitis B specifically, Ghana is considered to be a highly endemic country, with an estimated hepatitis B prevalence of 12.3% to 14.4% (Efua et al., 2023). Samuel spoke with us about the barriers he and his team face battling viral hepatitis in Ghana, the strategies they use to overcome those challenges, his reason for doing this vital work and his hopes for the future.

 Could you please introduce yourself and your organization? 

 My name is Samuel Addai. I’m from Ghana. I was born and raised here. I am the founder and the leader of Falcons Health Foundation. I have about 15 [employees] of which five are public health officers. And then also three of them are lab technicians. And I have three national officers. I have two midwives as well, and two community health workers. 

 Could you tell me a little bit about what some of FHF’s programs are that specifically address hepatitis and other health concerns in Ghana’s communities? 

 We create public awareness about viral hepatitis B and C. We are also advocates for those with hepatitis. And then we also give treatment guidelines; and  do treatment services for people, as well as  free health screenings. If we didn’t do this, people would not be bold enough to come out. There is stigmatization of these diseases. We explain that hypertension and high blood sugar causes a lot of health conditions. We explain to them signs and symptoms of HIV and viral hepatitis. Once we are done with this explanation, if they allow us, then we start the screening.  

 What is the main geographic area in which FHF works? 

 Ghana has 16 regions. We started in the capital Accra. The capital is very big and we cannot go to every area. What we normally do is select some areas from which more complaints are coming. Especially Circle and then Madina and Ashaima [areas of Ghana]. We also go to part of the Ashanti region and to Bono region. We also go to the Northern part of Ghana, Tamale, and the Central part, Winneba. These are very big regions, so we only go to certain parts. The rest, we have yet to decide. 

 What are some of the biggest challenges in addressing hepatitis and other health concerns? How have you worked to overcome these? Are there any additional resources that would be helpful to have? 

 There is a lack of knowledge regarding viral hepatitis in the regions we service. We realized that the kind of health information that they recieive…[is] misinformation. And then also some people, due to cultural practices and their beliefs, do not seek treatment or testing. We did brief interviews and found that they believe that viral hepatitis and HIV are a result of juju, or spiritual forces, witches, and wizards. Some people also think that viral hepatitis and HIV diseases are a curse from their ancestors. Some of these issues, since they are due to a lack of knowledge and education, what we normally do is educate them and explain to them that witches and wizards are not the cause of these diseases. We try as much as we can to educate them. We explain to them the cause of these diseases. We do intensive education. Some people pretend not to believe us, but then they will come back later and say ‘check for me.’ Later they also laugh and talk about what they used to believe. Their response tells us that they are ready to take a test.   

Lack of sustained financing is our burden. We find it difficult in terms of the transport system. And also social media platforms, most of them give mistrust. They say that the viral hepatitis vaccine, the side effects are harmful to health. We normally try as much as we can to overcome the misinformation.  

 And then also, some equipment and materials for testing can be a problem. And if we are able to get a center, we could do testing permanently. Currently, we do not have a center that we can use as a permanent place for testing. When we go to the areas, maybe we can just sit in a place at the roadside or in classrooms, which is not very helpful. We also do tents at the park. We give our information to [people]. We use information centers in the area to announce that we are back at a particular place and that people should come to us. So if we are able to get a small facility at least, which could take maybe 100 patients, it would be very helpful for us. We are doing very difficult work here and no one is paying us. This is a sacrifice that we are taking on.  

 What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care?  

 The biggest barriers that we can encounter is the language barrier. In Ghana, the entire country is not speaking one language. English language is our official language. Those who do not attend schools, those who do not have any educational background find it difficult to understand English language. A day before our program, we invite some people in that particular area and we negotiate with them and ask if it is possible for them to translate their language to their people. And then also we do sign language, especially for disabled people. Another major barrier is stigmatization. Everybody feels shy and thinks “maybe this person knows me well” or “maybe this person knows my family.” Many people fear coming out in public to get tested. 

 What are your favorite parts about your job? What got you interested in this work? 

 What I love most and my favorite part here is the impact that we are making in communities. The testimonies that people are sharing to us. We really love this. At least people have received a good health impact in their lives. 

 Saving lives is my priority. Saving lives is what got me interested. I studied general medicine and then later also I studied public health. 

 Any other thoughts or ideas you’d like to share for improving health in Ghana, at both the community and national levels? 

 I believe that supporting these programs are very, very important so that we can reach out to many people because it seems that many people do not have this particular information yet. I believe that many people are not getting awareness. Information is very important, so if many people received this information, it would be helpful for the program. 

 We have a plan to develop an electronic data management system and surveillance system. Ghana does not currently have a hepatitis B or C elimination plan in place. We want to develop this so that it can help us keep data. 

 We want to reduce mother-to-child transmission by ensuring testing for pregnant women is free to all pregnant women. Before someone can get tested, they pay out of their pocket. Many people do not have the money to get the test, so we want to do that for them so that their health can be improved by knowing their status. 

 Let me add this too: Treatment is only available in teaching hospitals and this must be fully financed by the patient. Currently there is no public budget line for testing and treatment. We want to do free health screening so that this will help improve people’s health. 

 Do you have any final thoughts that you’d like to share? 

 What I can say is that me and my team, we have been able to acquire land and we want to be able to use it as a center. If we are able to get the necessary support, we can put up a small facility so that many people will know our exact location. In case there is any issue, they can visit our center. The problem here in Ghana, the government is not supportive at all. Even the government health facilities, they are having problems. They lack a lot. We don’t get support from the government. The people who received services from us support us. Later, they come to us and say “I’m okay, [my health is] fine now” and out of their joy, they support us. Other than that, we do not have support. 

 Thank you so much for taking the time to speak with me and for sharing more about the great work FHF has done and will continue into the future! 

Below are some photos that Samuel shared of his team doing their incredible work across Ghana.

Efua, S.-D. V., Adwoa, W. D., & Armah, D. (2023, January 20). Seroprevalence of hepatitis B virus infection and associated factors among health care workers in southern Ghana. IJID Regions. https://www.sciencedirect.com/science/article/pii/S2772707623000097#:~:text=In%20Ghana%2C%20the%20prevalence%20of,the%20general%20population%20%5B7%5D. 

Hepatitis Awareness Month, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver Cancer, Liver Health, Living with Hepatitis B

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

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

 

 

The Scenario 

 

 

 

 

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

 

 

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

 

 

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

 

 

 

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

 

 

The Challenge: 

Lack of awareness: 

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

Barriers to treatment 

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

Difference between the cure and the current treatment for hepatitis B 

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

 

What Can You Do? 

Don’t wait! 

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

Find Resources! 

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

Information about hepatitis B:  

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

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

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

Resources for those newly diagnosed  

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

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

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

CHIPO Partner Highlight: Hepatitis B Initiative of Washington, D.C.

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that is co-founded and led by the Hepatitis B Foundation and is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis B Initiative of Washington, DC, (HBI-DC), and their new Deputy Executive Director, Sandra Ashford. Please enjoy a recent interview with Sandra, as she describes her work, including successes and challenges, and the positive impact HBI-DC has had by expanding their organization and mission.

Could you please introduce yourself and your organization?

Hello, my name is Sandra Ashford. The current Deputy Executive Director for the Hepatitis B Initiative, Jane Pan, will soon be retiring, and I’ll be stepping into the role. I started out in hepatitis B as a Latino outreach coordinator and then worked with the Fairfax County, Virginia, health department. I have also worked with IPHI (Institute for Public Health Innovation) for COVID.

Can you tell me about HBI-DC?

HBI-DC was founded by Leslie Oh, whose mom and brother died in the same year of hepatitis B-related complications. After experiencing the pain of losing her family members she decided that she did not want anybody else to go through that struggle. As a result, she started HBI Boston, where she was studying public health at Harvard University at the time. While in school she would pass out informational pamphlets about hepatitis and engage in other advocacy efforts. She moved to Washington D.C. in 2006 and started HBI-DC, which is where our organization started and from where it continues to grow.

Could you tell me about what some of HBI-DC’s programs are that specifically address hepatitis and other health concerns in African communities?

The programs that we offer include free health screenings for hepatitis B, hepatitis C, and HIV, as well as free glucose and cholesterol screenings for the community. Our reach at HBI-DC includes individuals in Washington DC, Maryland, and Virginia and, since 2006, we have educated 80,000 individuals on hepatitis, and have screened 24,000 people for hepatitis B, and an additional 22,000 for hepatitis C. From these screenings, 1,100 people have tested positive for hepatitis B and 900 people for hepatitis C. For us, that is a big success because those are individuals who did not know they were living with hepatitis.

Our programs target high-risk individuals including immigrants, especially from Africa and Latin America. Any individuals who test positive for hepatitis B or C are linked to free health care, thus ensuring that follow-up and support are established, and people are not left alone with a positive hepatitis B or C diagnosis. We also provide health education in the native language of our clients, so that everybody is accounted for in these different communities.

Which countries are primarily represented in the African diaspora that HBI-DC serves?

The African communities that we have served so far based on our screenings and education activities come from Algeria, Angola, Benin, Botswana, Burkina, Cameroon, Congo, Egypt, Ethiopia, Ghana, Kenya, Guinea, Libya, Liberia, Morocco, Nigeria, and Sierra Leone.

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

A significant challenge we encounter at the community level is health misinformation. Social media platforms have contributed to the mistrust of providers and vaccine mandates, and there is a significant lack of knowledge regarding viral hepatitis. We overcome these challenges through a diverse and multilingual workforce. Our community is more receptive to testing and education if they feel like they’re speaking to a representative that looks like them, shares cultural experiences, and speaks their language. In addition, all our educational and preventative material is also translated into different languages. We also utilize social media channels targeted at these diverse communities to spread accurate information on hepatitis and target populations most at risk.  

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

A big barrier for us is the stigma associated with HIV and hepatitis. For this reason, when we go out to events and we’re talking to communities we try to offer comprehensive health services like cholesterol and glucose screenings. When individuals get glucose and cholesterol screenings, it gives us an opportunity to educate the clients on HIV and hepatitis, because we understand the stigma associated with these diseases. Another barrier is just overall awareness and education, but we try to develop trust in the community to overcome this. Once this trust is built, it’s easier for the community to be receptive to our services and educational messaging.
I think the digital divide is a major challenge facing African immigrant communities, which can affect all aspects of their health and healthcare. When we started outreach efforts during the COVID-19 pandemic, we wanted to keep in touch with a lot of the clients that we had tested and helped out just to see how they were doing. One thing that we saw was that there was a lack of digital skills and knowledge. For example, these communities were asking us for assistance in obtaining unemployment. Of course, we’re there to help them and to walk them step by step through the process but this lack of knowledge in the digital space was a big issue in connecting them to public health assistance programs during this time. This technological burden relates back to issues of connecting care in the community especially as they pertain to awareness, education, and linkage to social services. I think that overall, this traces back to social determinants of health, so I think more education and more support for the community are needed to address these concerns.

What are your favorite parts about your job? What got you interested in this work?

I started in public health with HBI, and the one thing I love is the challenge. It’s every day you’re coming in and there’s something that needs to be addressed or you are making an impact in a certain community and coming up with solutions. I think those are the best parts of being an executive director, knowing the impact you have on communities. The best story I can share is about when I was a Latino outreach coordinator, and we were screening for glucose and cholesterol. This one gentleman tried to come in numerous times and finally, we got him in for a screening. He was losing a lot of weight and couldn’t sleep at night, and he didn’t know it at the time, but when we tested him, he was diabetic. He was completely unaware because he had no healthcare access, and after the event, he went to the emergency room to receive care. He told us if it wasn’t for us, he could have died, and he said HBI-DC was like an angel to him. We also connected him with a great nonprofit clinic, La Clinica del Pueblo in D.C., and they were able to get him health insurance. Today he’s on health insurance and medication and doing well.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the U.S.?

I think some suggestions are to continue building community health worker programs. I think they make a big impact, especially regarding trust within the community and addressing the social determinants of health. I think we can reach out to more individuals in the Latino community and the African immigrant community and encourage them to take part in these programs. I believe support for these programs is important in closing health disparities. Also, I would avoid duplication of efforts to also achieve the greatest impact. So overall, utilizing our diverse partnerships to offer health services and close health disparities is the next step forward to reaching at-risk populations in the community.

Thank you so much for taking the time today, Sandra, and for sharing more about the amazing work HBI-DC has done in the community and will continue into the future!

Thank you!

300 Million Reasons, About Hepatitis B, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

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

The Scenario:

Woman is sick on couch, her husband is giving her an ice pack

Aroha Kawai just started a new job as a medical interpreter for Pacific Islander patients diagnosed with COVID-19. As a critical source of communication for the providers and the patients, she is often called to work night and weekend shifts. Aroha had a difficult conversation with the family members of a critical COVID-19 patient on whether they should discontinue ventilation support for the ailing grandmother. During this time, Aroha’s family noticed changes in her behavior. She stopped eating regularly, lost weight and repeatedly cancelled plans to go out. Aroha dismissed her family’s concerns as physical manifestations of the emotional burnout from work.

People are at a free hepatitis B screening event in a park.

Recently she attended a health fair hosted by her department at work. She approached a viral hepatitis screening booth and decided to get tested for hepatitis B. The following week, she received her results in the mail. Her results indicated that she had tested positive for hepatitis B. She shared her diagnosis with her mother who informed her that her grandfather died from liver cancer.  

Inside a doctor's office. A doctor is showing information about the liver. A woman with hepatitis B sits with her husband.

Aroha then followed up with her primary care doctor.  She discovered that she had chronic hepatitis B. Even though the ultrasound did not show any evidence of cirrhosis, her doctor ordered an imaging test (U/S, CT, MRI) to screen for liver cancer. Unfortunately, Aroha was diagnosed with early-stage liver cancer.  

Inside a hospital room. A man and child visit a woman with hepatitis B in a hospital bed.

Fortunately, the cancer had not spread and did not infect nearby blood vessels. Her doctor suggested a partial hepatectomy to remove the tumor safely as the rest of the liver was still healthy. Aroha decided to adhere to her doctor’s advice and successfully underwent the surgery. She has taken some time off from work to focus on recuperating from the surgery and spending time with loved ones.  

 

 

The Challenge:
  1. Dismissal of Symptoms:
    • Aroha initially ignored the physical symptoms of liver cancer. It is true that signs and symptoms may not necessarily be present.
    • However, it is crucial to take care of one’s health and never ignore warning signs. Fatigue, unintended weight loss, and loss of appetite are a few of the symptoms of liver cancer. 
  2. Cancer without Cirrhosis: 
    • It is possible to get liver cancer without cirrhosis. Therefore, it is always important to screen for liver cancer if you have chronic hepatitis B infection. 
  3. Importance of Screening
    • Liver cancer screening is a highly effective method to detect malignant tumors and prevent cancer for those living with hepatitis B.
    • Early intervention increases the survival rate significantly and stops the cancer from spreading to other vital organs. 
What can you do?
  1. Get Help!
    • If you experience pain or discomfort of any kind, it is important to reach out for help. Set up an appointment with your doctor and discuss your concerns.
    • There is a good chance you might be misunderstanding an important health issue for side effects of stress or emotional burnout. Do not ignore your symptoms or feelings.  
  2. Get Screened!
    • Hepatitis B is a leading cause of liver cancer, most of the time it is because someone did not know they were infected with hepatitis B or were not managing their hepatitis B infection.
    • Everyone should be tested for hepatitis B to know their status. Ask your doctor for a hepatitis B screening today.  
  3. Stay on track!
    • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through liver cancer surveillance regularly. Discuss with your doctor if you are at high-risk and how often you should get screened.
    • It is recommended to get an ultrasound with blood work every 6 months to check how the virus is impacting the liver.  This includes the alpha-fetoprotein (AFP) blood test to measure the levels of AFP in your blood as it may indicate the presence of cancer cells in your liver. This can also help detect any scarring or tumors. 

Don't ignore it until it goes away. Get help. Get screened for hepatitis B. Stay on track.

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

HBV, HDV, Hepatitis B Treatment, Hepatitis Delta (HDV), Liver, Liver Health, Living with Hepatitis B

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

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

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

Why do people choose to use herbal remedies?

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

Silymarin, milk thistle, and Kampo medicine

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

False claims and bad interactions

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

Strides in western health care

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

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

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

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

References

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

About Hepatitis B, HBV, Hepatitis B Treatment

Accessing Hepatitis B Treatment

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

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

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

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

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

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

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

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

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

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

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

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

 

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Web Annex 1. Key data at a glance. In: Global progress report on HIV, viral hepatitis and sexually transmitted infections, 2021. Accountability for the global health sector strategies 2016–2021: actions for impact. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.
  3. Polaris Observatory Collaborators (2018). Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. The lancet. Gastroenterology & hepatology, 3(6), 383–403. https://doi.org/10.1016/S2468-1253(18)30056-6
  4. https://www.nature.com/articles/d41586-022-00819-8
  5. Adjei CA, Stutterheim SE, Naab F, Ruiter RAC (2019) Barriers to chronic Hepatitis B treatment and care in Ghana: A qualitative study with people with Hepatitis B and healthcare providers. PLoS ONE 14(12): e0225830. https://doi.org/10.1371/journal.pone.0225830
  6. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., Hassan, M., Janssen, H., & Khalili, M. (2021). Patient Knowledge, Beliefs and Barriers to Hepatitis B Care: Results of a Multicenter, Multiethnic Patient Survey. Digestive diseases and sciences, 66(2), 434–441. https://doi.org/10.1007/s10620-020-06224-3
  7. Giles-Vernick, T., Hejoaka, F., Sanou, A., Shimakawa, Y., Bamba, I., & Traoré, A. (2016). Barriers to Linkage to Care for Hepatitis B Virus Infection: A Qualitative Analysis in Burkina Faso, West Africa. The American journal of tropical medicine and hygiene, 95(6), 1368–1375. https://doi.org/10.4269/ajtmh.16-0398
  8. https://data.worldbank.org/country/burkina-faso

Baruch S. Blumberg Institute