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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 

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

300 Million Reasons, About Hepatitis B, advocacy, HBV, Hepatitis B Awareness, Living with Hepatitis B

Podcast Recaps: A Global Perspective on Stigma and Discrimination Against Hepatitis B

B Heppy Recap: A Global Perspective on Stigma and Discrimination Against Hepatitis B 

Catherine Freeland is the Associate Director of Public Health Research at the Hepatitis B Foundation. As a researcher and founder of the Foundation’s Hepatitis B Discrimination Working group, Dr. Freeland shares more about the impact of discrimination and stigma as it pertains to people living with hepatitis B.  

What is the difference between stigma and discrimination? 

  • It’s important to understand stigma and discrimination are different. Stigma is a social process that is characterized by being excluded, rejected, and devalued because of the social judgement associated with a certain condition. Although the literature on the topic is limited, it has been shown that stigma related to hepatitis B has negatively impacted the quality of life for those living with hepatitis B around the globe. Discrimination is different in that it is characterized by the laws and behaviors that limit opportunities for growth. For example, denying access to education or work because someone is living with hepatitis B is a form of discrimination. Discrimination is often a result of stigma.  

What are the causes for stigma and discrimination as it pertains to hepatitis B? 

  • Lack of knowledge and understanding about hepatitis B in the community is a root cause of stigma and discrimination. Most people are unaware of what hepatitis B is and how it can be transmitted. This often results in rumors, myths and misconceptions spreading in the community and unfortunately can alienate people living with hepatitis B.  

How does stigma and discrimination against hepatitis B affect the lived experiences of people in the community? 

  • When myths and misconceptions spread about hepatitis B in the community, people with lived experience often face discrimination. A lot of people are required to undergo health screenings prior to starting employment.  If they test positive for hepatitis B, they can be denied employment and/or can be fired from their jobs in many parts of the world. It can then be difficult to find another job and support their families. For people who wish to get employment visas to work abroad, they are required to undergo health screenings. In the Philippines and the Gulf Coast (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia and the United Arab Emirates countries), it is common practice to deny employment visas to people living with hepatitis B. In some countries and cultures, pre-marital screening. We have also heard cases of individuals living with hepatitis B experience more challenges in custody of their children in divorce or separation cases.  

How can we address these challenges and what is the Foundation doing to support people experiencing discrimination? 

  • It is important for people with lived experience to speak up and share their experiences of stigma and discrimination. At the Hepatitis B Foundation, we have a discrimination registry where people can fill out survey responses pertaining to any discrimination, they are facing in their home countries. The survey is free and open access. We also have a working group of experts consisting of people with lived experience and community leaders and partners. By raising awareness about discrimination, we are working towards changes in policy across the globe to reduce stigma, improve lives, and give people living with hepatitis B a voice that matters. Ultimately everyone has a role to play in addressing discrimination and it starts with education and sharing accurate information on hepatitis B and advocating against this discrimination and stigma.  

 

Listen to the full episode here! 

300 Million Reasons, advocacy, United States

A Quick Introduction to Public Health Funding in the United States

Written by Frank Hood- Associate Director of Policy and Partnerships at Hepatitis B Foundation!

 

The COVID-19 pandemic put a spotlight on why countries need a robustly funded public health system that can respond to the needs of its citizens quickly. In the United States, that public health system is a patchwork of federal, state, and local departments, agencies, and programs. Each has their own rules and regulations, which can be challenging to navigate. You might have a hard time seeing how it all works together without falling apart. And you might struggle to understand how resources can find their way to the local health centers and community-based organizations doing much of the important health work on the ground. This blog post provides a basic overview of how public health funding works within the United States. 

Hundreds of federal departments, agencies, and programs funnel money into the public health system of the United States. One of the more familiar organizations is the Department of Health and Human Services (HHS). Among its many health-related functions, HHS handles disease prevention and outbreak response through the Centers for Disease Control and Prevention (CDC) and provides health coverage for underserved and older Americans through the Centers for Medicare and Medicaid Services (CMS). Other departments like the Department of Agriculture (USDA) may not seem like a key source of health funding, and yet support dietary health initiatives and help states build rural medical facilities through infrastructure investment programs.

The amount of funding these departments, agencies, and programs receive varies yearly. Some funding, like for Medicare and Medicaid, doesn’t require an annual vote from Congress (known as “mandatory spending” in policy-speak) and is just paid for as expenses are incurred. Other funding, like for the Health Resources and Services Administration (HRSA), requires a yearly vote of Congress as well as sign-off by the President. This is known as discretionary spending. Most US public health programs fall in the discretionary spending category. That vote happens each year after the House and the Senate go through a formal process to determine how much money every department, agency, and program in the entire federal government receives. This process also includes specifying any special instructions or conditions associated with the funding like restrictions on how the money can be spent or requesting a status report on the impact of a specific program

If Congress can’t agree on funding levels by the start of the new fiscal year, then a government shutdown occurs. In those instances, any non-essential federal program funded by discretionary spending would be forced to suspend operations, while state and local programs would still be able to function but would not receive federal funds during that time.

Once Congress approves funding levels, federal funds and agencies begin the process of distributing money to their various internal programs and to states and other localities. In the simplest terms, many agencies will send money to states in the form of grants that the states apply for by listing how they would use the money and what positive impact it will have on the state. The amount of funding that passes down to states depends on the function of the agency. State health departments receive the largest percentage of their funding from federal sources, so the grant-making process can lead to states competing for limited federal funds. Federal funds make up anywhere between half and two-thirds of states’ total health funding.

Much of the remaining funding for state health departments comes from their state legislatures. Each state has their own specific process, but most states mirror the federal approach of having their legislatures determine how much state funding should be given to various departments, agencies, and programs in the state and any restrictions on the use of that funding. Other sources of public health dollars include fines, fees, charitable donations, and public-private partnerships.

 

 

 

 

 

 

 

 

 

 

 

Generally, state health departments send their dollars to local health departments, which deliver direct care or education on the ground. The funding the state keeps  is often used to pay for state-wide health systems like health surveillance, emergency response, and prevention education. How states determine where money goes varies, but there are usually similarities to how federal departments and agencies determine which states should receive what funding with grant applications.  

Once local health departments and community-based organizations have funding in-hand, they then must spend it according to the rules and regulations set by the source (Congressional instructions, federal agency requirements, state requirements, etc.).  

At this point, you see the complex tapestry of public health funding in action in your community: the health screenings at the local fair, the vaccine drives at your local place of worship, and even when your child brings home a pamphlet from a health educational program held at school. It’s all public health funding in action. 

In addition to public funds, some programs are funded in part directly through donations from people like you. If a public health program means a lot to you, see if you can help the organization who put it together by volunteering, spreading the word or donating. 

 

References:

https://www.cdc.gov/about/organization/mission.htm 

https://www.cms.gov/ 

https://www.usda.gov/our-agency/about-usda/mission-areas 

https://crsreports.congress.gov/product/pdf/R/R47106 

https://www.crfb.org/papers/qa-everything-you-should-know-about-government-shutdowns 

https://www.astho.org/topic/public-health-infrastructure/profile/#activities 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.publichealthlawcenter.org/resources/state-local-public-health-overview-regulatory-authority 

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy

2022 Advocacy Year in Review

As we wrap up 2022, we hope you’ll take some time to look back and celebrate the exciting and important hepatitis B policy and advocacy achievements of the past year! Community partners and grassroots advocates around the world came together to advance our shared advocacy goals and working toward the elimination of hepatitis B.  

  

 

 

 

 

 

 

 

 

 

 

 

This year we celebrated big wins in the U.S. including:  

Congressional Funding for Pennsylvania Center of Public Health Excellence  

With the passage of the Fiscal Year (FY) 2022 Omnibus Appropriations Act in March, the Hepatitis B Foundation received $475,000 to create a Center of Public Health Excellence focused on hepatitis B elimination by providing expert resources, advice, training, capacity building and technical assistance for state and local partners on how to best prevent, treat and control hepatitis B, and to increase the rate of adult vaccination and testing for hepatitis B. The Center of Public Health Excellence was one of nine community projects that Congressman Brian Fitzpatrick secured funding for in the FY 2022 Omnibus. 

 

Implementing Universal Hepatitis B Recommendations   

In April, universal hepatitis B vaccination for adults aged 19-59 became official recommendation. HBF immediately embarked on a dissemination campaign to raise awareness of the new guidelines amongst various stakeholder groups. HBF also launched the Hepatitis B Vaccination and Screening Advisory Council, which is comprised of key stakeholders from the provider and patient advocate communities and hepatitis B experts. The Council held a two-day meeting in June to develop implementation strategies for universal hepatitis B vaccination and screening (expected in 2023) and will publish its findings in a white paper. 

 As our network of grassroots advocates and storytellers continues to grow, we have also expanded our involvement in state/local advocacy and global advocacy. Our ongoing advocacy efforts in the U. S. include calling on Optum to restore the hepatitis B treatment Vemlidy back to their health insurance formulary. Globally we continue to put pressure on Gavi to move forward with implementation of hepatitis B birth dose in member countries, urging members of Congress and President Biden to help end hepatitis B discrimination in the U.S. military, recognizing National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day in the U.S., advocating for universal adult hepatitis B screening, and increasing funding for hepatitis B and liver cancer. 

 

Updated U.S. Public Health Service Corps Medical Standards  

The U.S. Public Health Service (USPHS) Commissioned Corps announced in December that it is updating its medical standards to accept future applicants living with chronic hepatitis B and HIV. Previously, HIV and hepatitis B infection were both considered disqualifying medical conditions. The Hepatitis B Foundation became aware of this issue in late 2020, when an individual with hepatitis B applied to serve but was denied due to their hepatitis B infection. Working alongside partners, we successfully advocated for a change in this policy by meeting with senior administration official and Congressional champions, and getting language included in the FY 2022 House Labor-HHS Appropriations report urging the USPHS to allow officers with hepatitis B to serve in the Commissioned Corps.  

  

Check out the report to learn more!  

https://www.hepbunited.org/assets/Advocacy/5d40b3bcc9/2022-HBU-Year-in-Review-Final.pdf 

  

From all of us at the Hepatitis B Foundation and Hep B United, THANK YOU for your continued support and dedication to advocating for hepatitis B awareness, prevention, treatment, and research and combatting stigma and discrimination. We are so proud of what the hepatitis B advocacy community achieved this year, and we look forward to continuing to work together to build on the momentum of these accomplishments in 2023! 

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Research, United States

Eighth Annual Hep B United Summit a Success!

Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.  

The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B. 

The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year. 

 As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!

Research, United States

All of Us Research Program

Medicine is not one size fits all. Changing that idea takes All of Us. 

Why is it that an African American woman in her thirties living in a large city tends to receive the same medical care as a man in his sixties of European descent who lives on a farm in rural America, who in turn receives the same treatment as a Korean American mother of two in her forties living in a midwestern suburb? Each of these people has different ancestry, lifestyle, environment, socioeconomic status, and genetics, all of which have a major impact on health. Why should these factors not impact healthcare as well?

The All of Us Research Program, an initiative of the National Institutes of Health, is working to change that. The goal of the program is to diversify the pool of available biomedical data, so that researchers can study many different people and groups, and doctors in turn can then make much more informed decisions about prevention, diagnosis, and treatment of various conditions, that are much more tailored to individual people and to specific groups of people, a practice known as precision medicine. For far too long, doctors have been using data from and information about “the average person” (typically a white man) to make decisions and provide care to everyone in the extraordinarily diverse population of the United States. Now there is a great opportunity for all of us to come together to help them change that! 

The overall objective of the project is to recruit one million or more participants and to follow them over ten years.The Hepatitis B Foundation, in partnership with Hep Free Haw aii and the Asian Engagement and Recruitment Core (ARC), is working to spread the word about the All of Us Research Program to everyone, but particularly among Asian American, Native Hawaiian, and Pacific Islander communities, who are under-represented in this area, historically and currently. 

Why should I participate?

This is an important chance to learn about your own health, including risk factors and exposures.  This is also a great opportunity to help fight diseases, start to close the gaps in a healthcare system that currently does not provide all Americans with the same high quality of healthcare, and more quickly find solutions to serious healthcare problems. Examples of some questions you could help answer are: “How can we prevent the chronic pain that affects more than 100 million people across the US each year? How can we develop cancer treatments that will work the first time, so that we can skip painful trial-and-error chemotherapy? Why does the heart medication Plavix have a much lower success rate among Asian Americans than those of European descent? What would be a more appropriate treatment?” The answers to these questions can be found by gathering more data and more insights from more people. People like you! You have the power to change the course of healthcare for yourself, your community, and future generations.

How Can I Get Involved?

Getting involved is quick and easy! The steps to follow are:

  • Visit www.joinallofus.org to learn more, enroll, and provide consent for the sharing of your electronic health record, where all of your medical information is digitally stored. 
  • Complete a series of surveys that will ask for information about your lifestyle, environment, family history, and background.
  • Provide health measurements like height, weight, waist circumference, and heart rate, among others. 
  • Provide biosamples of blood, urine, and saliva. 
  • Start using apps and technology to track your behaviors and routine activities, starting with a FitBit and including others down the road that are still under development. 

You will receive help and guidance at each stage in the process. 

What about my privacy?

Glad you asked! Any data that you provide will be highly secure and protected. Data security for this project has been built by experts with input from the public. All data is encrypted with identifying information removed, and guaranteed by a Certificate of Confidentiality. Researchers must also agree to a Code of Conduct before accessing the data. You will have access to any and all of your data at any time throughout the program and the highest standard of transparency is practiced. 

What if I don’t want to continue?

You are in control. You can stop your participation at any time. If you have already provided data and no longer want it to be used, you can simply let All of Us know and your data will be destroyed. 

Partners in the Process

All of Us is not a project where researchers know all of the answers and are just mining participants for data. Choosing to participate in All of Us means that you are a partner in the research process. Your thoughts and insights are valuable and you will play a direct role in shaping healthcare for yourself and your community both now and in the future – not just with your data, but as an active participant in the research process, including in the proposal and guidance of future research. 

The All of Us Research Program aims to serve people better, to be more inclusive in biomedical research, to find healthcare solutions that are realistic for and meaningful to more people, and to work toward research and medical breakthroughs that are more reflective of the diversity of the United States. Take the next step to make sure we are Invisible No Longer. Visit www.joinallofus.org to get started today!

 

Hepatitis B Advocacy

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?

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Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.
Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

By Christine Kukka

Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.

Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. Continue reading "One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?" →

Baruch S. Blumberg Institute