Hep B Blog
CAB Corner, Clinical Trials, HDV, Hepatitis Delta (HDV), Living with Hepatitis B

Lived experiences of clinical trials and how patient insights can improve equity in process and outcomes

 

 

 

 

Authors: Lori Scott, Amanda Goldring, Joe Balestreri, Philip Kwame Yeboah, Kenneth Kabagambe, and Prince O. Okinedo  

Patient involvement in research means they are included as active partners in all stages of the research process. In other words, patient involvement ensures that research is carried out with patients, instead of research being done to patients [1].  

 

Patient involvement is essential throughout the drug development and clinical trial process to ensure patients’ clinical needs and preferences are met [2]. When clinical trial teams do not involve patients as research partners to identify appropriate research outcomes and co-create study designs, the teams may fail to achieve meaningful outcomes. More and more researchers are realizing that the personal experiences of patients and their caregivers are not just useful, but vital to the design of clinical trials. 

 

Patient participation in clinical research is crucial for informing patient recruitment and retention efforts that can ultimately speed up the development and potential market availability of medicines and diagnostics [3]. In the end, patients are the intended recipients of the products of clinical research, and if patients are actively involved in research, they can effectively improve outcomes. 

 

The following four sections share real life stories and lived experiences of individuals trying to participate in clinical trials, and the challenges they have faced. The patients and caregivers who contributed to this blog have personal experiences with applying for, enrolling in, and being rejected from clinical trials, and know of the treatment consequences when patients are not involved in their care plans. Based on their experiences, they have suggested many ways to incorporate the patient voice into drug development and clinical trial design, from recruitment, enrollment and retention methods to informational materials for patients, to help industry and academia develop more accessible clinical trials and research efforts. 

 

Please note: Following the four accounts of personal experiences, there are seven specific suggestions for researchers.   

 

Lori’s lived experience: Challenges identifying and applying for clinical trials (2018) 

There is no clear pathway for patients when trying to find and apply for clinical trials, and much of the effort is placed on the patient to move through the process.  

 

Currently, it seems the internet search bar is the best option for patients trying to join clinical trials, and recruitment is not happening at the local level in communities and even in doctors’ offices. This process places a significant burden on the patient and needs to change.  

 

My daughter’s diagnosis of hepatitis B, hepatitis D and other rare digestive diseases did not come with a map. We had to start with the internet and do our own research. I would work all day and research all night; I was in a fight for my daughter’s life. We learned about some potential clinical trials through the Hepatitis B Foundation’s Clinical Trial page and how to apply for study participation. When my daughter applied for a clinical research program with the National Institutes of Health (NIH), I had to figure out the whole process from finding information to applying and getting screened. 

 

We were excited when she was accepted for the first phase of the trial, but as I understood later, my daughter’s study group was one of the first of this trial. The trial was not well organized, and it seemed that the research team was not cohesive. It seemed that the staff did not know if the patients had full understanding of all that would happen in the clinical environment. Participants involved in the consent process need to understand that research is distinct from clinical care. Research eventually benefits society rather than the participant. It is also necessary to understand expectations and risks involved in participation, and that someone knowledgeable is available to go over questions and concerns before the consent signature. 

 

While the travel was well coordinated, it was difficult for my daughter due to her frail physical condition. When we arrived, some of the specialists assigned to her care were on vacation or otherwise unavailable, which was heartbreaking as we were informed of my daughter’s very full itinerary before planning our trip to the center, to ensure she would receive all planned evaluations. We had planned specifically for these two days and that somehow did not happen. These physicians were vital to the study process, and the evaluations should have been postponed until those key people were available. 

 

We returned home with little communication from the program after their testing, which they told us would be normal. A year later, we received a letter from the organizers, stating that they were releasing her from the study but would keep her data in the system. 

Reflecting on this experience, I was disappointed in the way the trial was organized. If there was a patient navigator, or clear informational sources, we would not have had to guess what was happening next for the entire time we were at the research site. Because it wasn’t well explained, we had unmet expectations of the study. Despite these shortcomings, we are glad to have participated and felt we learned so much about research. 

By gaining a deeper understanding of patients’ and caregivers’ lived experiences and challenges, organizations offering clinical trials can become a true asset, providing the valuable data needed for future research. 

 

Amanda’s lived experience: Clinical trial rejection (2020) 

It was only a couple of months after my hepatitis B diagnosis that my liver nurse called to ask if I would be willing to apply for a clinical trial. The trial team was trying to find a functional cure for HBV. She said that she could not guarantee that my application would be successful, as she did not know the criteria for acceptance, but it was worth a try. 

I sent off my application form and waited to hear back.  

 

Initially, I was very excited at the thought of participating in a trial. Even if the trial came to a dead end, it could possibly be another step towards a functional cure. I watched for the post each day, hoping for an acceptance letter. As time went on, I was sure that I had a place on the trial. Surely, if I did not meet the criteria I would have heard back almost right away. To save disappointment, it would have been better for the “acceptance criteria” to be transparent, either at the start before my nurse had become involved, or at a later stage on the application form. In this case I was given no patient-facing materials. Surely this should be a standard requirement. 

 

Time passed and eventually the letter I had waited for dropped through my letter box. On opening it my heart sank–it was a rejection letter. Due to being diagnosed with Crohn’s disease (a type of irritable bowel disease that makes your digestive tract become swollen), I was not suitable for the trial. The letter tried to let me down gently, saying that maybe I would be suitable later. However, it gave me false hope and for months I hoped that a letter would arrive inviting me to participate in the trial that did accept Crohn’s patients. Eventually, I realised that this letter was never going to come. My world, which was already dark, felt darker. I felt that society was rejecting me and now the drug trials were too. Drug researchers should consider patients’ feelings when rejecting their application. They should implement quick responses and avoid using language that may give false hope for future acceptance into another clinical trial. 

 

Thankfully, I have moved on from this dark period in my life. I have accepted that I will probably never be eligible for a clinical trial, as a functional cure seems to rely on strengthening the immune system. My Crohn’s treatment relies on suppressing the immune system. It would have been kinder, in the long run, not to give false hope. An explanation as to why Inflammatory bowel disease was excluded would be far better than “maybe at a later date.” As patients, we are used to hearing stark news and although it might be painful to hear, we eventually do accept it – we have no choice. 

 

There is hope after being rejected for a trial. There will possibly be other drug trials to apply for and if not, the pot of gold at the end of the rainbow will eventually be a functional cure for this or the next generation. 

 

Researchers must consider patients’ feelings when rejecting their applications. Implementing quick responses is not just a matter of efficiency; it also shows respect for the patient’s time and effort. 

 

Joe’s lived experience: Clinical trial participation (2013 to 2019)  

When I signed-up for the National Institutes for Health’s (NIH) clinical trial to find a treatment for hepatitis delta in 2013, I didn’t know how it would affect my life overall. I was focused on getting help. 

 

The NIH was accommodating in many ways concerning my practical needs. For U.S.-based patients in my trial, airfare, lodging on campus, and most land transportation was paid for by the NIH.  

 

But there were many challenges to being in a trial far from home. Looking back, I figured each of my 70 round trips from California to Washington could cost me $100-200 in lost wages and travel expenses. There were also challenges getting to D.C. for weekly appointments, which required 16 to 20 hours of travel round trip. These visits were crammed with many weeks’ worth of tests, scans and doctor appointments. Sometimes, poor communication from the NIH led to confusion about my travel arrangements. Other times, my symptoms were so bad that I couldn’t bear a long plane ride plus getting to and from the airport. 

 

Communication with the NIH was good but sometimes lacking, especially as it was difficult getting my hepatitis delta test results. Oftentimes, I did not receive clear and adequate explanations of my results.  

 

If I were involved in redesigning my study, I would have urged the researchers to have a better understanding of what patients and their loved ones go through just getting to the NIH, including the financial, physical and social costs, as well as time commitment. When clinical trials are informed by patients, other patients in the community are more likely to volunteer for trials AND are more likely to stay committed to participating, as the challenges mentioned above (personal hardships, communication issues) have been accounted for during the clinical trial design. 

 

Philip’s: How patient involvement in research can enhance hepatitis care in Africa 

Patients in Ghana are not involved in clinical research, despite existing research infrastructure. There are many clinical research institutions, including the Ghana I Noguchi Memorial Institute for Medical Research and Kumasi Centre for Collaborative Research. These are the same research institutions that train the doctors who handle hepatitis B.  

 

Linking it to my late brother’s story, I remember when Komfo Anokye Teaching Hospital in Kumasi, Ashanti region, Ghana, booked my brother who was living with hepatitis B on Aug. 17, 2017, to come for treatment on Sept. 4, 2017. Because there are a limited number of doctors who were available to treat people living with hepatitis B, my brother had to wait for weeks for a doctor’s appointment. During this waiting period, I updated the hospital on my brother’s deteriorating condition many times, but they insisted that he must wait until the booked date. At exactly 8:15 a.m. on Tuesday morning, 5th September 2017, heartbreakingly, I saw my brother Emmanuel, also known as Action man, giving his last breath. Because there was no patient involvement in care plans in Ghana, there was nothing to help my brother’s condition, as he was diagnosed too late, and there were no clinical trial opportunities to explore (to our knowledge), despite the apparent need. If those living with hepatitis B had more say in their care plan, they would be able to communicate directly with researchers about their conditions and be guided accordingly, and appropriately for their individual cases. 

 

After my brother’s demise, our immediate family members went to get tested for hepatitis B. We all tested negative for hepatitis B infection, and we took the vaccine. Based on these experiences, I have taken it upon myself to educate the public about the deadly but preventable hepatitis B infection on social media platforms and radio stations. Currently, I am the Ashanti Regional Representative for Hepatitis Foundation of Ghana and a member of the Hepatitis B Foundation’s Global Hepatitis B and D Community Advisory Board.  

 

People with lived experience have insights that can help inform researchers and clinical trial developers in their research efforts and encourage them to seriously consider patient inputs during all steps in the drug development process, from clinical trials to developing patient care plans.  

 

Kenneth: How patient involvement in research could have future impact on care/treatment practices 

Patient involvement in research can significantly enhance African healthcare practices by promoting more effective, relevant, and culturally sensitive interventions. This method reflects African communities’ cultural, social, and economic realities, ensuring that findings and recommendations are viable for local implementation. Patients can contribute insights into critical health challenges, such as infectious diseases, maternal health, or non-communicable diseases like diabetes and hypertension. 

 

Involving patients in research increases their understanding of their diseases, treatment options, and the importance of adherence to medical guidance, leading to better health outcomes [4]. They can also function as advocates and educators, increasing awareness and debunking misconceptions about diseases and treatments. 

 

Research that includes patient involvement can establish treatment protocols and care practices better adapted to the local environment, promoting comfort, dignity, and patient choices [5]. Patients engaged in inclusive research are more likely to trust and engage with the healthcare system, leading to higher participation in health initiatives, better treatment adherence, and greater uptake of preventative measures [6]. 

 

Research that is co-led with patients can have a dramatic influence on policymakers. By providing data founded on the real-world experiences of persons afflicted by diseases, patient-centered research can drive the development of policies that prioritize patient needs and assist in implementing more successful health services. 

 

In conclusion, the revolutionary potential of patient involvement in research cannot be more strongly emphasized! By ensuring that healthcare practices are more relevant, culturally sensitive, and aligned with the population’s needs, this approach has the power to significantly improve the quality of care, foster greater trust in the healthcare system, and ultimately lead to better health outcomes and more resilient healthcare systems across Africa. 

 

Suggestions 

Research using patient involvement led to more meaningful socio-economic and cultural outcomes, as patients identified issues of which researchers were not previously aware [7]. When patients are involved throughout the drug development/clinical trial design process, they can inform researchers of best practices to disseminate results among the participants and greater patient community, as they can suggest appropriate communication methods to ensure comprehension [8, 9]. Similarly, patients can co-present results at conferences [10], which can increase the greater patient community’s trust in research, and potentially increase their willingness to participate in future clinical trials, or other research endeavors. 

 

Take home suggestions for researchers:  

1) Recognize the hardships and costs of long-distance travel for patients. Find ways to alleviate this by, for example, allowing patients to get tests and scans closer to home. 

2) Find ways to help patients with the incidental costs of the trial, not otherwise covered. For example, connect patients with educational resources about financial assistance programs and fundraising methods.  

3) Improve timely communication between trial staff and patients. 

4) Properly educate and inform potential study participants on the study’s required activities.  

5) Allow study participants to have access to their personal trial data and study statistics. 

6) Recognize patients as citizen scientists, as their participation is critical to research advancement, as they provide careful and specific observations. Researchers must keep in mind that patients are not just test subjects. 

7) As important as it is to get the patient to understand clinical trial requirements, researchers should also make the effort to educate the close family members of consenting patients. Offering moral support, especially in communal settings like Africa, is critical to enhance acceptance of clinical trials and research endeavors. 

 

Resources 

  1. National Institute for Health and Care Research. (n.d.). I want to help with research. [Accessed from:  https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/] 
  2. Arumugam, A., Phillips, L.R., Moore, A., Kumaran, S.D., Sampath, K.K., Migliorini, F., Maffulli, N., Ranganadhababu, B.N., Hegazy, F. & Botto-van Bemden, A. (2023). Patient and public involvement in research: A review of practical resources for young investigators. BMC Rheumatology, 7(2). doi: 10.1186/s41927-023-00327-w 
  3. Anderson, A., Borfitz, D., & Getz, K. (2018). Global public attitudes about clinical research and patient experiences with clinical trials. JAMA Network Open, 1(6), e182969-e182969. doi: 10.1001/jamanetworkopen.2018.2969 
  4. Shea, L., Pesa, J., Geonnotti, G., Powell, V., Kahn, C., & Peters, W. (2022). Improving diversity in study participation: Patient perspectives on barriers, racial differences and the role of communities. Health Expectations. 25(4):1979-87. doi: 10.1111/hex.13554 
  5. Wind, A., van der Linden, C., Hartman, E., Siesling, S., & van Harten, W. (2022). Patient involvement in clinical pathway development, implementation and evaluation–A scoping review of international literature. Patient education and counseling. 105(6):1441-8. DOI: 10.1016/j.pec.2021.10.007 
  6. Mulqueeny, D.M. & Taylor, M. (2022). Patient-centred care: Reality or rhetoric—patients’ experiences at ARV clinics located in public hospitals in KwaZulu-Natal, South Africa. AIDS research and therapy. 9(1):41. DOI: 10.1186/s12981-022-00463-2 
  7. Shen, S., Doyle-Thomas, K. A. R., Beesley, L., Karmali, A., Williams, L., Tanel, N., & McPherson, A. C. (2017). How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expectations: An international Journal of Public Participation in Health Care and Health Policy, 20(4), 543–554. https://doi.org/10.1111/hex.12490  
  8. Beier, K., Schweda, M. & Schicktanz, S. (2019). Taking patient involvement seriously: A critical ethical analysis of participatory approaches in data-intensive medical research. BMC Medical Informatics and Decision Making, 19(90). doi: 10.1186/s12911-019-0799-7 
  9. Maccarthy, J., Guerin, S., Wilson, A.G. & Dorris, E.R. (2019). Facilitating public and patient involvement in basic and preclinical health research. PLoS One, 14(5): e0216600. doi: 10.1371/journal.pone.0216600 
  10. Jackson, T., Pinnock, H., Liew, S.M., Horne, E., Ehrlich, E., Fulton, O., Worth, A., Sheikh, A. & De Simoni, A. (2020). Patient and public involvement in research: From tokenistic box ticking to valued team members. BMC Medicine, 18(79). doi: 10.1186/s12916-020-01544-7 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver

Why Access to Birth Dose Remains a Challenge Despite Availability of Vaccine. 

 

 

 

 

 

 

 

 

 

Birth dose is the most critical public health tool to prevent the spread of new hepatitis B infections among newborn children. Vaccination at birth provides lifelong protection against hepatitis B and reduces the chances of developing chronic hepatitis B. However, access to birth dose and vaccinations for children remains a challenge in many countries, especially countries low- and middle-income countries with high prevalence of hepatitis B, despite the availability of safe and effective vaccines.  

Lack of Knowledge 

Many communities are unaware of the hepatitis B virus and how it can cause severe damage to the liver, especially for newborn children. Mothers who deliver children at home or without appropriate medical care are also less likely to get the birth dose for their babies. Lack of knowledge about the spread of the virus and vaccination persists among some medical providers and professionals as well, making it harder for families to get birth dose for their children in a timely manner. Misconceptions about the virus and the vaccine also makes it difficult to get children vaccinated. Educational campaigns should focus on raising awareness about the hepatitis B virus and teaching communities about the role of the birth dose in preventing serious liver disease and death (Freeland et al., 2023).

Cost and Transportation 

Many families mentioned cost to be a barrier to getting the birth dose for their children. For some mothers, they were unable to deliver at health facilities or lacked safe transportation to get to a health facility to get their children vaccinated. For families who lived in rural areas, finding a nearby health facility was a challenge. This also makes it difficult for mothers to return to the health facilities to get the remaining doses for their children.  

Lack of Political Will and Advocacy 

While the birth dose is available in many countries with high rates of hepatitis B, it is not always accessible to people who need it most. Local governments and health ministries must lead national vaccine advocacy campaigns to spread awareness about the availability and importance of getting children vaccinated at birth to prevent hepatitis B. Additionally, the hepatitis B birth dose should be available to all families at no cost. Vaccine advocacy efforts should focus on debunking myths and misconceptions about the virus and the birth dose.  

GAVI, the Vaccine Alliance has launched a new initiative to tackle some of these challenges and expand access to hepatitis B birth dose where it is needed most. Learn more about the new vaccination programme here.

 

References:  

Boisson, A., Goel, V., Yotebieng, M., Parr, J. B., Fried, B., & Thompson, P. (2022). Implementation Approaches for Introducing and Overcoming Barriers to Hepatitis B Birth-Dose Vaccine in sub-Saharan Africa. Global health, science and practice, 10(1), e2100277. https://doi.org/10.9745/GHSP-D-21-00277 

Freeland, C., Kanu, F., Mohammed, Y., Nwokoro, U. U., Sandhu, H., Ikwe, H., Uba, B., Asekun, A., Akataobi, C., Adewole, A., Fadahunsi, R., Wisdom, M., Akudo, O. L., Ugbenyo, G., Simple, E., Waziri, N., Vasumu, J. J., Bahuli, A. U., Bashir, S. S., Isa, A., … Tohme, R. A. (2023). Barriers and facilitators to hepatitis B birth dose vaccination: Perspectives from healthcare providers and pregnant women accessing antenatal care in Nigeria. PLOS global public health, 3(6), e0001332. https://doi.org/10.1371/journal.pgph.0001332 

300 Million Reasons, About Hepatitis B, HBV, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, World Hepatitis Day

Đọc về chiến dịch mới ra mắt “Learn the Link” của Hepatitis B Foundation cùng Cô Dung Hứa của Hội Ung Thư Việt Mỹ (VACF)

 

 

 

 

 

 

 

 

 

Tháng này, chúng tôi có dịp trò chuyện với cô Dung Hứa của Vital Access Care Foundation, hay còn được biết đến với tên Vietnamese American Cancer Foundation – Hội Ung Thư Việt Mỹ. Cô Dung và đội ngũ VACF liên tục làm việc để trợ giúp nhu cầu của cộng đồng người Việt tại Quận Cam, California và các khu vực lân cận. Cô Dung cho chúng tôi biết về các kinh nghiệm trong việc ngăn ngừa bệnh viêm gan B và ung thư gan trong cộng đồng, cũng như sự đóng góp vào chiến dịch Learn the Link, chính thức khởi động vào tháng 2 năm 2024. Cô Dung chia sẻ những thử thách mà mình phải đối mặt, những trải nghiệm quý giá và nhiều cách cô ấy làm việc để kết nối và nâng cao hiểu biết cho cộng đồng. 

Chiến dịch Learn the Link được tạo ra nhằm nâng cao nhận thức về mối liên hệ giữa bệnh viêm gan B mãn tính và ung thư gan một cách phù hợp về mặt văn hoá cho các cộng đồng chịu ảnh hưởng nặng nề nhất. Chiến dịch được thông tin thông qua việc trực tiếp nói chuyện với các thành viên trong cộng đồng và được xây dựng với việc tập trung và ưu tiên các nhu cầu của họ. Hepatitis B Foundation – Quỹ Viêm Gan B đã tổ chức các nhóm thảo luận và thành lập một ban cố vấn để tìm hiểu về nhu cầu và lo ngại của cộng đồng, qua đó tạo ra tài liệu tham khảo thích hợp với các nền văn hoá khác nhau. 

Cô có thể giới thiệu về bản thân và cơ quan của cô được không? 

Tên tôi là Dung và tôi hiện đang làm việc tại Vital Access Care Foundation – Hội Ung Thư Việt Mỹ. VACF vừa chính thức đổi sang tên tiếng Anh mới vì đã mở rộng các dịch vụ không chỉ tập trung vào bệnh ung thư, tuy nhiên chương trình Hướng Dẫn Toàn Vẹn về Ung Thư, và chương trình về Viêm Gan B – Ung Thư Gan vẫn là trọng tâm chính. VACF được thành lập vào năm 1998 và cung cấp các dịch vụ hỗ trợ chung về ung thư, sau này phát triển thành chương trình tập trung vào bệnh ung thư vú. Vào năm 2003, VACF bắt đầu các chương trình về gan và viêm gan B. Một trong những người sáng lập VACF là bác sĩ chuyên khoa ung thư và một người sáng lập khác là bác sĩ chuyên khoa tiêu hoá, hai bác sĩ này giúp tư vấn và hướng dẫn cho chương trình viêm gan B và ung thư gan của VACF. 

Cô có thể cho tôi biết về các chương trình của VACF nhằm ngăn ngừa trực tiếp bệnh viêm gan B và ung thư gan không? 

Các chương trình về viêm gan B và ung thư gan của VACF tập trung vào cộng đồng người Việt. VACF cung cấp dịch vụ tiếp cận, nâng cao hiểu biết, hướng dẫn bệnh nhân và xét nghiệm truy tầm bệnh. VACF bắt đầu bằng việc phổ biến thông tin vì nhiều người trong cộng đồng không biết về bệnh viêm gan B. VACF tổ chức các buổi truy tầm cho cộng đồng tại nhà thờ và các sự kiện văn hoá. Mọi người thường hay đồng ý làm xét nghiệm khi VACF tổ chức truy tầm ở các sự kiện này. Nếu ai đó xét nghiệm dương tính với viêm gan B, VACF sẽ hướng dẫn và kết nối họ tới dịch vụ chăm sóc. Nếu có ai cần tiêm ngừa, họ sẽ được hướng dẫn đi tiêm ngừa. Nếu gặp phải một trường hợp phức tạp hơn, nhân viên sẽ tham khảo ý kiến một trong những thành viên trong Hội Đồng Quản Trị để có tư vấn chuyên nghiệp miễn phí. Trong thời gian đại dịch, VACF đã liên kết dịch vụ viêm gan B và COVID–19, khuyến khích mọi người tiêm vắc xin COVID-19 và xét nghiệm viêm gan B cùng lúc. VACF đã vận dụng kinh nghiệm tiêm ngừa vắc xin đã có từ trước và rất ngạc nhiên là nhiều người sẵn sàng ‘bị chích” hai lần trong một ngày. 

Cô có thể cho tôi biết về cộng đồng mà VACF phục vụ không? 

VACF tập trung vào cộng đồng người Mỹ gốc Việt tại Quận Cam. Cộng đồng này bao gồm người nhập cư và người tị nạn. Vẫn còn rất nhiều định kiến xung quanh bệnh viêm gan B trong cộng đồng người Việt ở đây. Nhiều người vẫn tin rằng họ có thể bị nhiễm viêm gan B khi ăn chung với người bị dương tính. Trong cộng đồng người Việt có câu: “Quét nhà thì ra rác”, đây là một thành ngữ lảng tránh, ví dụ như nếu không đi khám bác sĩ, thì sẽ không biết mình bị bệnh. Về mặt văn hoá, thì thường chỉ chia sẻ những điều tốt đẹp. Còn có sự thành kiến xoay quanh việc tìm kiếm sự giúp đỡ. Vì vậy thường không nên chia sẻ về việc  bản thân đang gặp khó khăn hoặc bộc lộ sự yếu đuối, điều này có thể khiến người ta chìm đắm trong nỗi đau của bản thân.  

Ngoài sự thành kiến, nhiều người còn phải đối mặt với các vấn đề sức khoẻ tinh thần không được chẩn đoán và nhiều khó khăn khi chuyển đến một đất nước mới. Trong cộng đồng, tỷ lệ người có bảo hiểm cũng thấp hơn, dẫn đến việc nhận dịch vụ chăm sóc y tế định kỳ trở nên khó khăn. Cộng đồng người Á Châu cũng phải đối mặt với quan niệm sai lầm về thiểu số mẫu mực, điều này có thể gây hại vì nhiều người cho rằng người Châu Á có bằng cấp cao và thu nhập ổn định, điều này không phải lúc nào cũng đúng.  

Nhiều người VACF giúp đỡ chỉ nói một ít tiếng Anh hoặc hoàn toàn không nói tiếng Anh. Khi những người này đến nước Mỹ, họ cần tìm việc làm ngay và thường bị xếp vào nhóm lao động tay nghề thấp. Rất khó để những người nhập cư và tị nạn mới này có thể thăng tiến. Tuy nhiên, nhiều người vẫn có được động lực làm việc bằng cách tạo ra những cơ hội tốt hơn cho gia đình và con cái họ. 

Một số thách thức VACF gặp phải trong việc giải quyết các mối lo ngại về sức khoẻ của cộng đồng là gì? 

Các thử thách lớn nhất là thành kiến đối với bệnh tật và việc có được tài liệu thích hợp về mặt văn hoá và ngôn ngữ. Ngôn ngữ rất phức tạp. Các làn sóng nhập cư khác nhau ảnh hưởng đến cách giao tiếp với mọi người vì ngôn ngữ thay đổi theo thời gian, do đó việc tìm kiếm sự cân bằng giữa ngôn từ cũ và mới hơn là rất quan trọng. Đây tiếp tục là một quá trình học hỏi đối với tôi vì tôi ngày càng tiếp xúc nhiều hơn với mọi người trong cộng đồng. Việc đối phó với thành kiến và rào cản về ngôn ngữ và văn hoá là quan trọng và khó khăn, nhưng đó cũng là phần đáng quý nhất trong công việc này. 

Tại sao cô nghĩ rằng tài liệu tham khảo về bệnh viêm gan B và ung thư gan lại rất quan trọng cho cộng đồng của cô? 

Có được các tài liệu là điều quan trọng vì tri thức là sức mạnh. Chìa khoá để làm tốt hơn là sự hiểu biết và kiến thức đến từ việc học hỏi. Mọi người sẽ không biết điều gì là tốt nhất cho mình nếu họ không có đủ thông tin, điều này cần được củng cố thông qua việc lặp đi lặp lại nhiều lần. Nếu mọi người làm việc gì đó mà không hiểu tại sao phải làm vậy thì hành vi đó sẽ không kéo dài. Nhưng nếu họ hiểu, họ có thể tiếp tục những hành vi đó và giúp truyền bá thông tin đến những người khác. 

Kinh nghiệm của cô trong việc thực hiện các nhóm thảo luận và phục vụ trong ban cố vấn để cung cấp thông tin về chiến dịch Learn the Link là gì? 

Tôi đã có mặt để hỗ trợ và quan sát nhóm thảo luận. Tôi nhớ là các thành viên cộng đồng đã tham gia rất tích cực. Họ có kinh nghiệm cá nhân về bệnh viêm gan, điều này giúp họ có động lực để tham gia nhiệt tình hơn. Đó là một không gian an toàn để họ đóng góp ý kiến. Việc trở thành một phần của quá trình này đã mang lại sức mạnh cho họ và khiến họ cảm thấy được lắng nghe. Nỗ lực của dự án này là nhằm tạo ra các tài liệu phù hợp về mặt văn hoá và tìm kiếm phản hồi từ cộng đồng, qua đó làm mọi người cảm thấy như họ đã đóng góp cho một điều gì đó quan trọng và có ý nghĩa. 

Khi phục vụ trong ban cố vấn, tôi nhớ rằng nhóm chúng tôi đã được tập hợp lại từ nhiều cộng đồng khác nhau và chúng tôi đã đưa ra những suy nghĩ và phản hồi về dự án. Tôi đã có cơ hội được nghe những nhu cầu, lo ngại, và ý kiến phản hồi từ những cộng đồng mà VACF thường không làm việc chung. Tôi nhận ra rằng có nhiều điểm tương đồng giữa các cộng đồng khác nhau và thật hữu ích khi có cơ hội tìm hiểu thêm về các cộng đồng khác. Nhìn thấy mọi người đưa ra quan điểm của họ và lắng nghe những điểm tương đồng cũng như đặc trưng là một trải nghiệm thú vị. 

Tại sao việc các tổ chức phải nói chuyện trực tiếp với các thành viên cộng đồng khi tạo ra các chiến dịch như “Learn the Link” là quan trọng?  

Tập trung vào cộng đồng là điều quan trọng đối với bất kỳ chiến dịch hoặc hoạt động nào. Để giúp đỡ cho cộng đồng, chúng ta phải lắng nghe họ. Chúng ta không muốn tạo ra thứ gì đó mà chúng ta cho là tốt nhất nhưng lại không phù hợp với những người mà lẽ ra nó phải phù hợp với. Sự kết nối và mối quan hệ trực tiếp mang đến cho các thành viên cộng đồng một cảm giác thoải mái khi chia sẻ ý kiến là chìa khoá để thành công trong việc tiếp cận và nâng cao nhận thức. 

Cách hiệu quả nhất để các tổ chức tương tác với cộng đồng của cô là gì? 

Cách hiệu quả nhất để tương tác với cộng đồng là gặp gỡ họ ở những nơi họ thường lui tới. Sẵn sàng đi ra ngoài và tìm kiếm các thành viên cộng đồng, và cởi mở để hiểu biết nhu cầu cũng như nỗi lo của họ là điều quan trọng. Chúng ta không thể chỉ làm việc trong khung giờ bình thường từ 9 giờ sáng đến 5 giờ chiều, mà phải ra ngoài và tìm hiểu cộng đồng ở ngoài giờ làm việc thông thường. VACF cố gắng linh hoạt trong giờ giấc để gặp gỡ các thành viên cộng đồng, tổ chức các buổi họp mặt vào cuối tuần, ở chùa hoặc công viên. Chúng tôi cố gắng lắng nghe, thấu hiểu và xây dựng mối quan hệ bền vững. 

Hiểu được sự khác biệt về văn hoá và giữa các thế hệ cũng rất quan trọng. Đặc biệt đối với người Việt, lời truyền miệng có sức mạnh rất lớn. Thông tin lan truyền trong cộng đồng thông qua việc truyền miệng có thể lan truyền như cháy rừng. 

Kết nối với các nhà lãnh đạo cộng đồng, những người và tổ chức đang làm việc trực tiếp với cộng đồng là một cách khác để kết nối với mọi người. Điều này bắt nguồn từ hoàn cảnh nhập cư và tị nạn; những người trải qua chiến tranh có thể khó tin tưởng hơn vào các cơ quan chính quyền nhưng lại tin tưởng vào những người mà họ đã xây dựng mối quan hệ tốt với. 

Cô có suy nghĩ hoặc nhận xét nào khác về chiến dịch “Learn the Link” và tiềm năng của nó trong việc cải thiện các hoạt động chăm sóc sức khoẻ của người dân trong cộng đồng của cô không? Có tài liệu nào khác mà cô hy vọng sẽ thấy trong tương lai không?  

Tôi đã xem qua các tài liệu khi chúng được phổ biến và đã chia sẻ tài liệu cho một nhân viên mới xem, và tôi thấy rằng tất cả các tài liệu đều bằng tiếng Anh. Khi tất cả các bản dịch đều có sẵn, sẽ thật tuyệt khi có thể chia sẻ không chỉ với cộng đồng mà còn với những người làm việc với cộng đồng nữa. Viêm gan B có thể không phải ưu tiên hàng đầu của mọi người, nhưng với sự quảng bá, những tài liệu này có thể nhắc nhở mọi người rằng kẻ giết người thầm lặng này vẫn tồn tại và có sẵn các nguồn hỗ trợ khi họ cần đến. 

Kinh nghiệm của cô trong việc giúp đánh giá và chỉnh sửa một trong những bản thảo khoa học cuối trước khi nó được gửi đi để xuất bản từ dự án này là gì? 

Có rất nhiều thông tin để đọc! Việc tham dự các buổi họp cố vấn, tham dự các nhóm thảo luận, và đọc bản thảo đã được chia ra thực hiện trong một khoảng thời gian dài. Rất thú vị khi được đọc bản tóm tắt tất cả những công việc đã được hoàn tất. Đó là một cơ hội tốt để ôn lại kiến thức và tôi cũng thích đọc những câu trích dẫn đã để lại cho bản thân mình ấn tượng sâu sắc. Các cộng đồng khác có nhiều điểm chung với cộng đồng người Việt, cho nên rất tuyệt khi được hợp tác cùng nhau vì tất cả chúng ta đều cùng đang cùng làm công việc ý nghĩa này.  

Click here to read the original blog post in English.

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/ 

Baruch S. Blumberg Institute