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advocacy, HDV, Hepatitis D Advocacy, Hepatitis Delta (HDV)

An Interview with Hepatitis Delta Advocate, Dr. Carla Coffin

Since 2016, the Hepatitis B Foundation has run a program called Hepatitis Delta Connect which aims to increase awareness of hepatitis delta and support for those living with the virus. For this month’s blog post, we sat down with Dr. Carla Coffin, a hepatologist in Canada, who is active in the hepatitis delta space.

Please introduce yourself and describe what you do and where you work.

My name is Dr. Carla Coffin, and I am a hepatologist at the University of Calgary in Alberta, Canada, I am a clinician scientist who does research on hepatitis B and this year I am the president of the Canadian Association for the Study of the Liver. Calgary is the founding/coordinating site for the Canadian Hepatitis B Research Network, which helps lead a collaboration of researchers, scientists, and practitioners across Canada for hepatitis B research and advocacy.

How common is hepatitis delta in your location or nationally?

That is an excellent question because until relatively recently, we didn’t know that much about how common hepatitis delta was in Canada. Most studies were single-site, single-center studies, showing about 1% prevalence overall in people living with hepatitis B. Then the Canadian Hepatitis B Research Network in collaboration with the National Microbiology Lab and the National Reference Lab in Canada did a study, led by Dr. Carla Osiowy, that showed, based on a retrospective screening of cases that were referred for hepatitis delta testing, that the prevalence was about 3% overall. Now, there’s more recent data that is consistent with that approximation of about 3%. We are also conducting a study that shows that for people who are being referred for delta screening, their overall positivity is about 4%. These are specific studies, but if you are just looking at universal screening rates of everyone who is living with hepatitis B who is potentially at risk for hepatitis delta, and not necessarily pre-identified, it’s much lower, maybe only about 1% or 2%.

What are the current screening recommendations and protocols in Canada for hepatitis delta virus (HDV)?

Historically, the recommendations from our major guidelines have been risk-based screening. So, people that are coming from areas where we know hepatitis delta is endemic. People that may have other risk factors such as a history of injection drug use or clinical characteristics that might trigger the clinician to suspect hepatitis delta co-infection. But based on that, I think that people are missed or are not diagnosed, so there’s inaccurate epidemiology just on risk-based screening. Our updated hepatitis B guidelines, which hopefully will be published in 2025, are more consistent with other expert recommendations to do universal screening. So at least a single, one-time test will be recommended for all people living with hepatitis B, to screen for hepatitis delta. And many of our laboratory partners agree with these recommendations. So hopefully there will be a change in the near future for that.

Do you think the reported prevalence is accurate or are people missing?

I would say that the current reported epidemiology of about 2 to 3% is likely to be accurate, but without having a robust universal screening program and robust reporting of hepatitis delta-positive cases, then I can’t say that with 100% confidence. One of the metrics that the Public Health Agency of Canada is advocating for is to have more robust data collection on hepatitis D epidemiology. That’s one of the calls by Action Hepatitis Canada, which is an advocacy group.

So, I think the epidemiology is accurate based on the data we have, but I can’t be 100% confident until we do more robust studies.

What do you think could help to address some of the underdiagnosis of hepatitis delta globally?

We need universal screening to ensure that people are diagnosed and not just rely on risk-based testing. We talk about knowing where hepatitis delta is endemic, but we should also recognize that there are probably countries where the prevalence is higher, but because of a lack of screening, we don’t know where it is actually endemic.

Even in my practice and just this week, we came across a patient that had been followed in our clinic for 15 years with hepatitis B and we only diagnosed this person with hepatitis delta recently, because we hadn’t screened it before.

And I think the other important thing is to increase awareness among health practitioners. A specialist might know about hepatitis delta, but a primary care provider or non-hepatologist would be left less aware. Increase education of healthcare practitioners to say, you know, if your patient has hepatitis B, they should be screened for hepatitis delta.

What do you usually do to help patients manage hepatitis delta?

Well, I think the first thing is you need to explain as clearly as possible exactly what hepatitis delta is and how you get hepatitis delta. How do you prevent it from spreading?

Explain how it’s transmitted by sharing blood and body fluids, highlighting that if you get the vaccine for hepatitis B, that protects you against both B and delta. Then explain what delta can do to your liver and how it can increase your risk of getting liver damage, or liver scarring or cirrhosis, how it increases your risk of getting liver cancer, and the importance of having regular checkups on your liver. So, regular blood tests and regular ultrasounds for monitoring for liver disease and for liver cancer. A lot about management is empowering the patient and giving them educational resources. Then the other thing is to discuss the treatments. There is only one treatment approved for hepatitis B in Canada, and you can use it for hepatitis delta, and that’s interferon. That’s the only thing we can currently use to treat hepatitis delta.

If/when a new drug is approved in Canada, do you think distribution and uptake will be straightforward or do you perceive challenges?

Yes, there will be many challenges. Part of it stems from underappreciation of hepatitis B as well as hepatitis delta. So, if a new drug is approved, it may be a challenge just to raise awareness about it.

And the second thing is that health care is federally funded, but the funding is then sent to each jurisdiction. The provinces and territories decide how healthcare funding is spent, and then there’s a complex approval process. It starts with Health Canada approval and then there’s this pan-Canadian drug agency called CADTH, the Canadian Agency for Drugs & Technologies in Health, that reviews the medication and sees whether or not they would recommend it. Then each provincial agency looks at the review by CADTH and decides if they want to have it on the formulary.

So, it could be time-consuming, complex, and challenging because of these factors.

Can you describe some of the advocacy efforts in which you have been engaged on hepatitis delta at different levels, and with different stakeholders?

Yeah, so I’m happy to say we’ve been having some success with advocacy. So different stakeholders and partners include Action Hepatitis Canada, the Canadian Liver Foundation, and our professional organization, the Canadian Association for the Study of the Liver. Activities we have done include going to Parliament Hill in Ottawa and holding our Annual Viral Hepatitis Elimination Day on May 9th. We’ve done that now for three years. With the help of all these partners and stakeholders, we have been engaging various governments (so government ministers at the provincial level and at the federal level), and also working with our federal health agencies (so the Public Health Agency of Canada) and having discussions with them to increase the messaging about hepatitis delta.

Are there any messages about hepatitis delta that you would like to share with policy or decision-makers?

I think you need to start with the patient’s voice. What I found most striking when we were meeting with the different policy decision-makers and government officials was that the physicians or the experts could talk about hepatitis B and talk about hepatitis delta and you didn’t see the same impact, but we brought patients with us when we had our meetings and when the patients spoke up and talked about their lived experience, you could really see their story having a strong impact. Then, also try to support the work of our partners.

What are some possible programs or initiatives that can help raise the profile of hepatitis delta and improve participation in the care cascade?

A lot of the people affected by delta are non-Canadian born, so there are a lot of challenges in navigating the healthcare system and language barriers. If we had more in terms of language or translations, I think that would be a good way to increase participation in healthcare and potentially raise the profile. The second is the education of healthcare practitioners, going beyond the specialist, and talking to primary care and family doctors.

Also, perhaps starting at the community level, at a non-academic center to raise more awareness about hepatitis delta and involving people with lived experience. But that’s a bit more difficult because there are so many, at least in Canada, challenges with understanding the language and understanding that patients often have many other challenges that it’s hard for them to think about their health care.

Do you have any final thoughts on hepatitis or hepatitis delta?

There’s been a lot of progress on hepatitis B with the drugs that we have currently, the effective nucleoside analogs, and with the hepatitis B vaccine, of course. It’s a remarkable vaccine, but we need more research and investment in both basic science research to try and find a cure for hepatitis B, and more public health research and investment to reach those that are living with hepatitis B, to provide them treatment and limit financial barriers. Also, more research and investment for hepatitis delta and testing. There’s not even a standardized test for delta. So, my final thought would be that we’ve done a lot, we’ve made progress, but there’s still more work to be done, and we need more government and industry funding.

HBV, Hepatitis B Awareness, Hepatitis B Research

CHIPO Member Highlight: Africa Health Research Institute

The Coalition against Hepatitis for People of African Origin (CHIPO) is a community coalition co-founded and led by the Hepatitis B Foundation. We are composed of organizations and individuals interested in addressing the high rates of hepatitis B infection among African communities around the world. CHIPO serves as a forum for sharing information and best practices and increasing national and global capacity to improve hepatitis B awareness, testing, vaccination and treatment among highly affected African communities.

This month, CHIPO interviewed member organization, the Africa Health Research Institute in South Africa about their mission, work, and goals, especially related to hepatitis B. Read on to learn more about the great work of this organization!

  1. Could you please introduce yourself and your organization?

I’m Dr. Janine Upton, currently a Project Manager within the discipline of implementation science at the Africa Health Research Institute (AHRI), Durban KwaZulu Natal, South Africa.

AHRI is an independent, transdisciplinary scientific research institute based across two campuses in the province of KwaZulu-Natal (KZN) in South Africa. AHRI’s research combines population, basic and translational, social, implementation and clinical sciences to understand and intervene in the health and well-being of South African communities. AHRI works in partnership with local communities and South African academic, governmental, and other policy stakeholders, and collaborates with over 60 institutions globally. AHRI prioritizes the training of the next generation of African scientists. The work of AHRI’s ~700 scientists, students and staff members is driven by the values of ubuntu, transformation, leadership, innovation, excellence and collaboration.

  1. Could you tell me a little bit more about your organization’s programs and campaigns?

AHRI actively drives an HIV/TB/Emerging Infections (like COVID and Mpox) program, and more recently an HBV agenda, partnering with media outlets (TV/radio), the Department of Health (DoH), schools, the Department of Agriculture (DoA), local municipalities, and South African Police Services (SAPS), amongst others, to educate and raise awareness of these diseases within the populations most affected by them. More specifically, AHRI has recently put hepatitis on its strategic map by establishing the study entitled “Evaluation of Vukuzazi LiVEr disease – Hepatitis B: A study to determine the prevalence and characteristics of chronic hepatitis B virus infection in the Vukuzazi population to inform interventions for diagnosis, treatment and prevention” (EVoLVE). See our website for more details: EVoLVE Hepatitis B Study – Africa Health Research Institute (ahri.org)

EVoLVE aims to address the pressing need to develop insights into local population HBV epidemiology (considering vaccination, exposure and infection), to quantify the need for – and potential impact of – antiviral treatment. EVoLVE also aims to enhance local pathways for the assessment and provision of clinical care to people living with HBV infection in South Africa. Data collected as part of an interdisciplinary collaboration between clinical and social scientists, in consultation with communities, will be used to inform responsive and sensitive-to-context interventions specifically targeting those at greatest risk of infection and disease, and provide clinical care, support and education, whilst developing an evidence-based foundation for future studies.

EVoLVE has already celebrated a successful collaboration between the clinical and human sciences by involving a Community Advisory Board (CAB) in the inductive development of community understanding and perceptions pertaining to the hepatitis B virus (HBV).  In January 2024, the AHRI EVoLVE Team participated in a community engagement with the AHRI CAB and conducted FibroScan training with AHRI clinical and research teams. (FibroScan is a non-invasive ultrasound that measures liver stiffness and fat content to help determine the health of your liver.)

  1. What are some challenges that you face in addressing hepatitis, how have you worked to overcome these? Are there any additional resources that would be helpful to have?

Poor community knowledge, awareness and applicability of HBV

The knowledge of HBV within communities was reported to be very limited and as a result, it is not perceived as a local concern. Poor screening and limited knowledge of prevention methods are other major barriers. Liver disease was not seen as synonymous with HBV, and there was an absence of any isiZulu (indigenous language term) for hepatitis B. Whilst participants were aware of liver disease, they lacked specific knowledge about HBV infection, often misattributing liver disease to alcohol use, traditional medicines, or poor adherence to ART (antiretroviral therapy, typically used to treat HIV infection). Liver disease was perceived to be a “white or rich person’s” disease, and subsequently not a community health concern.

Stigma and discrimination

Stigma and discrimination are a challenge as participants associated the symptoms of liver disease as synonymous with untreated HIV infection, which remains highly stigmatized in South African society. This often resulted in the loss of connections and the withdrawal of social support from families and communities. Caregivers, family members or other members of the community also experienced discrimination when trying to support someone suffering with liver disease. Additionally, participants described negative healthcare experiences, feeling dismissed and ignored by health care workers.

Inequitable access to healthcare

For people living with hepatitis B (PLWHB) who are advised to undergo long-term treatment, adherence presents a significant challenge, particularly for those experiencing food insecurity. These individuals often face the dilemma of prioritising feeding their families over covering the costs associated with treatment. Even when medication is provided at no cost, additional expenses such as transportation to healthcare facilities and time away from other responsibilities create financial burdens that are difficult to manage. As a result, many individuals become discouraged and instead seek support from traditional healers, who are more accessible within their communities.

You can learn more about health care challenges here:

https://www.sciencedirect.com/science/article/pii/S2055664024000153?via%3Dihub)

In terms of additional resources, we were able to secure a small project grant from University College London, called ‘Grand Challenges,’ but longer-term funding will be needed to build on these foundations.

  1. What do you think are some of the biggest barriers against raising awareness and addressing rates of hepatitis screening and linkage to care at the local and national levels, and what more do you think can be done in this sphere of awareness building?

There is an urgent need to identify social and psychological barriers to treatment adherence and develop strategies to overcome them, whilst concurrently adopting a social and medical focus on the identification of the determinants of health. In so doing, strengthening messaging and information available for the uptake of communities and empowering individuals and communities to improve health outcomes and reduce HBV transmission is critical. The hope is to at the same time address the misconceptions around the disease and reduce the stigma and taboo that occur within the silence surrounding the topic. This will assist in the scaling up of resources required to promote knowledge of the disease in communities, and encourage support systems necessary to improve mental health and treatment outcomes.

  1. What are your favorite parts about your job and what got you interested in this work?

I love the problem-solving that comes with my job – that people can come to me with novel and ever-changing requests and challenges to which I can apply my mind. Essentially – that is research! It’s identifying a real-world problem and applying your mind in finding solutions! I feel like the nature of the work we do at AHRI is meaningful and seeing this reflected in longitudinal data is truly rewarding. I love the field of health, it’s always been a passion of mine, so being able to combine a passion with a strength in enriching ways is fulfilling to me!

Links to some presentations:

Web page: https://www.ahri.org/evolve-hepatitis-b-study/

Other materials: https://doi.org/10.6084/m9.figshare.25237756

Useful links:

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. 

HBV, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Liver Health, Research

Highlighting the Relationship between Hepatitis B and Liver Cancer

Highlighting the Relationship between hepatitis B and Liver Cancer

October marks Liver Cancer Awareness Month, an initiative highlighting this significant, but under-prioritized public health concern. Unfortunately, people living with hepatitis B have greater risk of developing liver cancer, and this risk is even higher for people born in countries where hepatitis B is more prevalent (Department of Health and Human Services [HHS], 2014; Chayanupatkul et al., 2017). Because of this, the Hepatitis B Foundation (HBF) conducted a study among foreign-born communities in the U.S. who are heavily impacted by the hepatitis B virus (HBV) to assess awareness levels about the connection between HBV and liver cancer. HBF used the perspectives and ideas expressed during these focus groups to create culturally and linguistically tailored, community-focused awareness and educational materials, so that everyone has continuous access to user-friendly HBV and liver cancer information.

From April to September 2021, the HBF conducted focus groups with people from the Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. A total of 15 virtual focus groups took place, with 101 individuals providing their thoughts about what hepatitis B and liver cancer are, and insights into appropriate strategies to educate their greater communities on the connection between these two conditions. The resulting communications campaign aims to improve the public’s knowledge about the link between HBV and liver cancer, reduce hepatitis B- and liver cancer-related myths and misconceptions, and promote hepatitis B and liver cancer screening and early detection among Asian and Pacific Islander (API) and African and Caribbean immigrant communities. The ideas and experiences voiced by focus group participants also contributed to the development of informational liver cancer materials for community health educators to integrate into existing education programs for immigrant communities.

Summary of focus group findings:

All focus groups emphasized the need for educational materials to highlight the relationship between hepatitis B and liver cancer. Interestingly, people were more aware of liver cancer and its serious health consequences than they were of hepatitis B and how it is a leading cause of liver cancer. Many people had personal experience with liver cancer, having known family members, friends or other community members who have died from the disease. With this, participants believed that people will be more likely to practice healthy behaviors, like vaccination and routine screening, when they know that HBV can lead to liver cancer and know what behaviors can reduce their risk of liver cancer and death. When people learn about the benefits of vaccination (like full protection against HBV and reducing the risk of transmitting the virus to loved ones), and screening (keeping your liver healthy), and are provided with resources and tools to manage their health, they are empowered and are more likely to make healthy choices to reduce their risk of severe health outcomes.

When educating people about the connection between the two diseases, it is also important to address the widespread misconceptions about both hepatitis B and liver cancer, which contribute to shame and stigma surrounding each condition. Many focus group participants revealed that their communities believe that HBV is related exclusively to sexual promiscuity, injection drug use and poor hygiene, all of which lead to stigma against people living with hepatitis B (PLHB), who are believed to be “immoral” or “dirty.” These stigmatizing beliefs cause PLHB to become reluctant to seek care and treatment for the virus, and can discourage screening in the greater community because people do not want to be shamed by or isolated from their social circles. Additionally, participants discussed how their communities believe that liver cancer is only associated with alcohol and are unaware of the causal relationship between HBV and liver cancer. According to focus group participants, educational materials should include some information about how hepatitis B is transmitted and how it can lead to liver cancer if left untreated and unmanaged. One way to do this is by including the personal testimonials of PLHB and liver cancer in educational materials, who show the audience how they stay healthy and maintain a good quality of life while living with these diseases. As people see how one’s quality of life does not diminish, and learn from the stories of people living with hepatitis B or liver cancer, they may become more understanding of the diseases and supportive of their own community members who are living with them.

Focus group participants were also asked to identify communication strategies that would be acceptable for their community groups. As for in-person communication, educational sessions should take place in settings where people feel safe, including community-based organizations, religious spaces, and healthcare offices. These sessions, as emphasized by participants, should be facilitated by trusted messengers, like patient navigators, doctors, and faith leaders, or other people who have a shared culture with the audience. Demonstrating cultural respect during face-to-face communication is also of utmost importance. Certain communities emphasized that it is especially important to have gender-specific messengers when discussing topics like sexual transmission of hepatitis B (Taylor et al., 2013; Cudjoe et al., 2021). 

Educational campaigns should also be strategic when discussing community-specific risk, as it is important to discuss each community’s risk without placing blame on a specific group. Despite the fact that countries in the Asian-Pacific and sub-Saharan African regions have endemic levels of HBV and the highest global incidence rates of liver cancer (Zamor et al., 2017), many focus groups explained that their communities consider HBV and liver cancer to be Western diseases, since the conditions are often not discussed in home countries, and are therefore unaware of both the severity of the diseases and their personal risk. Focus group participants agreed that informational material can group highly impacted communities together when presenting prevalence rates and risk factors, so as to reduce shame associated with HBV and liver cancer of one group while increasing audience awareness of their risk (Parvanta & Bass, 2018). 

Experiences of Community Focus Group Facilitators

Community participation and leadership was of utmost importance in this project. Two focus group facilitators recounted their experiences of recruiting and conducting focus groups with their communities. The first was the leader of the Cantonese focus group.

Despite being nervous about how it would turn out, one facilitator spent time thinking about the project. They chose to conduct the focus group in Chinese (Cantonese), the “native language of the participants,” and hoped that communicating in Cantonese would increase participant engagement, especially when discussing their “lived experience of the disease.” 

“Prior to convening the Zoom meeting, I had provided a one-on-one orientation to each participant about the theme of the focus group and expectations. As a result, everyone was ready and able to fully participate, and speak openly at the meeting. It was a fruitful discussion among the five participants. Everyone brought up their perspectives and insights about stigma and health education strategies to the community. They had expressed a sense of fear and emotional distress when they were made aware of the relationship between hepatitis B and liver cancer. They raised lots of questions on hepatitis B transmission, testing and vaccination, and liver cancer and treatment, and were very interested to learn more about necessary lifestyle changes if they contracted chronic hepatitis B. 

At the end participants had requested a follow-up session to learn more about HBV and liver cancer.  They will be excited to know about the release of the newly developed Chinese-language educational materials on both diseases, which came together because of their contributions. I would suggest Hepatitis B Foundation and UC Davis to host an in-person workshop to present  the new education materials.  That would be a meaningful outreach and education to the local Chinese and Asian communities.”

Another facilitator shared their thoughts and insights regarding the focus group they conducted with their African immigrant community. They felt that being a facilitator for this study was an “enlightening experience,” especially as they uncovered their community’s healthcare awareness as it relates to hepatitis B and liver cancer. They continued to share:

“Running the focus group gave me valuable insights into the knowledge gaps and misconceptions surrounding HBV within the African immigrant population. Through open and honest discussions, we uncovered specific areas where education and awareness initiatives can have a significant impact. Many participants needed to understand the transmission, prevention, and available resources related to these diseases. Understanding these nuances is crucial in tailoring our educational materials effectively.

Regarding the study findings, it was evident that there is a pressing need for culturally sensitive educational resources. The unique challenges African immigrants face, including language barriers and cultural differences, highlight the importance of creating materials that resonate with our community members. Moreover, the findings emphasized the urgency of dispelling myths and stigmas associated with HBV and fostering a supportive environment for affected individuals and their families.

As for the materials produced for the campaign, I am genuinely impressed with the effort and attention to detail put into their creation. The content is informative and culturally relevant, making it relatable to our community. Using images, culturally familiar scenarios, and visuals ensures that these materials will significantly raise awareness about HBV in my community.

When disseminated effectively, these materials will empower African immigrants with the knowledge they need to protect themselves and their loved ones. By addressing the specific concerns and questions raised during our focus group sessions, these resources have the potential to bridge the information gap and promote proactive healthcare practices within our community.”

Conclusion

The overall goals of these materials are to facilitate improved hepatitis B and liver cancer awareness, increase testing and prevention behaviors, and reduce misconceptions about the two diseases to ultimately reduce HBV- and liver cancer-related death. Thanks to the insights and recommendations from the focus group participants, educational hepatitis B and liver cancer materials were created in a culturally sensitive and linguistically appropriate manner for a number of communities in the U.S. who are greatly impacted by the two diseases. To reach a broad audience, the materials will be available on multiple communication platforms and in multiple languages. This first part of the community-informed educational campaign can be found on the HBF’s Liver Cancer Connect website now. All materials will be fully uploaded and available to the public for further community education starting in February of 2024. Translated materials and messages tailored for audio and video formats will also be uploaded on a rolling basis. 

References

Chayanupatkul, M., Omino, R., Mittal, S., Kramer, J. R., Richardson, P., Thrift, A. P., El-Serag, H. B., & Kanwal, F. (2017). Hepatocellular carcinoma in the absence of cirrhosis in patients with chronic hepatitis B virus infection. Journal of Hepatology, 66(2), 355-362. https://doi.org/10.1016/j.jhep.2016.09.013

Cudjoe, J., Gallo, J.J., Sharps, P., Budhathoki, C., Roter, D., & Han, H-R. (2021). The role of sources and types of health information in shaping health literacy in cervical cancer screening among African immigrant women: A mixed-methods study. Health Literacy Research and Practice, 5(2), e96-e108. doi: 10.3928/24748307-20210322-01

Department of Health and Human Services. (2014). Action plan for the prevention, care, & treatment of viral hepatitis. Department of Health and Human Services.

Hong, Y.A., Juon, H.S., & Chou, W.Y.S. (2021). Social media apps used by immigrants in the United States: Challenges and opportunities for public health research and practice. mHealth, 7, 52. doi: 10.21037/mhealth-20-133

Hong, Y.A., Yee, S., Bagchi, P., Juon, H.S., Kim, S.C., & Le, D. (2022). Social media-based intervention to promote HBV screening and liver cancer prevention among Korean Americans: Results of a pilot study. Digital Health, 8, 20552076221076257. https://doi.org/10.1177/20552076221076257 

Joo, J.Y. (2014). Effectiveness of culturally tailored diabetes interventions for Asian immigrants to the United States: A systematic review. The Diabetes Educator, 40(5), 605-615. DOI: 10.1177/0145721714534994

Parvanta, C., & Bass, S. (2018). Health communication: Strategies and skills for a new era: strategies and skills for a new era. Jones & Bartlett Learning, LLC.

Porteny, T., Alegria, M., del Cueto, P., Fuentes, L., Lapatin Markle, S., NeMoyer, A., & Perez, G.K. (2020). Barriers and strategies for implementing community-based interventions with minority elders: Positive minds-strong bodies. Implementation Science Communications, 1, 41. doi: 10.1186/s43058-020-00034-4

Taylor, V.M., Bastani, R., Burke, N., Talbot, J., Sos, C., Liu, Q., Jackson, J.C., & Yasui, Y. (2013). Evaluation of a hepatitis B lay health worker intervention for Cambodian Americans. Journal of Community Health, 38(3), 546-553. doi: 10.1007/s10900-012-9649-6

Zamor, P. J., deLemos, A. S., & Russo, M. W. (2017). Viral hepatitis and hepatocellular carcinoma: Etiology and management. Journal of Gastrointestinal Oncology, 8(2), 229–242. https://doi.org/10.21037/jgo.2017.03.14

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. 

About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Uncategorized, United States

Hepatitis B and Injection Drug Use: Risks, Barriers to Care, and Prevention Strategies

 

 

 

 

 

 

 

 

 

Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low  awareness and education about hepatitis B.

HBV Prevalence among PWID Communities

People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus. 

Barriers to Care for PWID Communities

Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019).  Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here. 

Prevention Strategies

One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling,  hepatitis testing, and referral to drug treatment for example.

Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023).  The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020). 

 

To learn more about the resources provided by Prevention Point, click here.

 

References:

World Health Organization. (2022, June 24). Hepatitis B. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/news-room/fact-sheets/detail/hepatitis-b

World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059

Centers for Disease Control and Prevention. (2020, August 11). NP report 2025 goal: Reduced HBV rate among PWID. Centers for Disease Control and Prevention. Retrieved March 15, 2023, from https://www.cdc.gov/hepatitis/policy/NPR/2020/NationalProgressReport-HepB-ReduceInfectionsPWID.htm

Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.

Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html 

Centers for Disease Control and Prevention. (2023, March 17). QuickStats: Age-adjusted drug overdose death rates, by state – National Vital Statistics System, United States, 2021. Centers for Disease Control and Prevention. Retrieved March 19, 2023, from https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a7.htm?s_cid=mm7211a7_e&ACSTrackingID=USCDC_921-DM101471&ACSTrackingLabel=This+Week+in+MMWR+-+Vol.+72%2C+March+17%2C+2023&deliveryName=USCDC_921-DM101471

Board of Health, Department of Public Health. (2022, October 26). Health Department releases data on 2021 overdose deaths in Philadelphia: Department of Public Health. City of Philadelphia. Retrieved March 20, 2023, from https://www.phila.gov/2022-10-26-health-department-releases-data-on-2021-overdose-deaths-in-philadelphia/

Baruch S. Blumberg Institute