Barriers to accessing hepatitis B medication: a qualitative study from the USA and Canada.

OBJECTIVES: To collect and document the numerous barriers that people living with hepatitis B (PLHB) encounter when trying to access their hepatitis B virus (HBV) medications. DESIGN: Researchers collected qualitative data through 24 online interviews. The semistructured interview questions focused on the impact that HBV has on different aspects of daily life (physical, emotional and social), personal experiences managing their infection, HBV treatment experiences and interactions with healthcare providers. SETTING: All interviews occurred over Zoom. PARTICIPANTS: The participant cohort consisted of 12 males and 12 females. 63% of all participants represented communities of colour (37% white, 17% black/African/African American and 46% Asian/Asian American). Most of the participants were on antiviral treatment at the time of the study (62%). Participants were PLHB (self-reported), ≥18 years old, living in the USA or Canada and spoke English. RESULTS: Participants reported several barriers to accessing medicine among PLHB including financial barriers, health insurance and pharmacy preauthorisation process and other intangible barriers like lack of access to reliable patient-friendly information and stigma. The identified barriers to accessing HBV medication impacted patients' continuity of care. CONCLUSIONS: Access to medicine is essential to improving health outcomes. PLHB experience significant barriers to accessing HBV antivirals at different levels. Patient-related, physician-related and healthcare system barriers were identified as themes contributing to antiviral access challenges. More research is needed to identify strategies to improve access to HBV medications.

Highlights from the 2023 International Meeting on the Molecular Biology of Hepatitis B virus.

Since its discovery in 1965, our understanding of the hepatitis B virus (HBV) replication cycle and host immune responses has increased markedly. In contrast, our knowledge of the molecular biology of hepatitis delta virus (HDV), which is associated with more severe liver disease, is less well understood. Despite the progress made, critical gaps remain in our knowledge of HBV and HDV replication and the mechanisms underlying viral persistence and evasion of host immunity. The International HBV Meeting is the leading annual scientific meeting for presenting the latest advances in HBV and HDV molecular virology, immunology, and epidemiology. In 2023, the annual scientific meeting was held in Kobe, Japan and this review summarises some of the advances presented at the Meeting and lists gaps in our knowledge that may facilitate the development of new therapies.

Dismantling Barriers to Hepatitis B and Delta Screening, Prevention, and Linkage to Care among the PWUD Community in Philadelphia.

The prevalence of hepatitis B and delta viruses (HBV/HDV) among people who use drugs (PWUD) remains largely unknown. In the context of one Philadelphia-based harm reduction organization (HRO), this study aimed to assess HBV/HDV prevalence and facilitate linkage to care. Participants completed a demographic HBV/HDV risk factor survey and were screened for HBV and reflexively for HDV if positive for HBV surface antigen or isolated core antibody. Fisher's exact tests and regression were used to understand relationships between risks and HBV blood markers. Of the 498 participants, 126 (25.3%) did not have hepatitis B immunity, 52.6% had been vaccinated against HBV, and 17.9% had recovered from a past infection. Eleven (2.2%) participants tested positive for isolated HBV core antibody, 10 (2.0%) for HBV surface antigen, and one (0.2%) for HDV antibody. History of incarceration was associated with current HBV infection, while transactional sex and experience of homelessness were predictive of previous exposure. This study found high rates of current and past HBV infection, and a 10% HBV/HDV co-infection rate. Despite availability of vaccine, one quarter of participants remained vulnerable to infection. Findings demonstrate the need to improve low-threshold HBV/HDV screening, vaccination, and linkage to care among PWUD. The study also identified gaps in the HBV/HDV care cascade, including lack of point-of-care diagnostics and lack of support for HROs to provide HBV services.

An updated assessment of hepatitis delta prevalence among adults in Canada: A meta-analysis.

Foreign-born (FB) persons represent a large proportion of adults with chronic hepatitis B (CHB) in Canada due to higher prevalence rates in countries of birth for FB persons. Suboptimal awareness and low rates of hepatitis delta virus (HDV) testing contribute to underdiagnosis and gaps in accurate estimates of Canada HDV prevalence. We aim to provide an assessment of CHB and HDV prevalence in Canada using a comprehensive literature review and meta-analysis. A comprehensive literature review of articles reporting HBsAg seroprevalence and anti-HDV prevalence was conducted to calculate country-specific rates and pooled prevalence of CHB and HDV using meta-analyses. Country-specific CHB and HDV rate estimates were combined with number of FB persons in Canada in 2021 from Statistics Canada to estimate total numbers of FB with CHB and HDV, respectively. These estimates were combined with estimates of Canada-born persons with CHB and HDV to yield the total number of persons with CHB and HDV. In 2021, we estimated 0.550 million (M) (95% CI 0.488-0.615) persons with CHB; 0.344 M (95% CI 0.288-0.401) were FB and 0.206 M (95% CI: 0.200-0.214) were Canada-born. The weighted average HDV prevalence among FB persons in Canada was 5.19% (17,848 [95% CI 9611-26,052] persons), among whom 50% emigrated from Asia and 31% from Africa. When combined with estimates of Canada-born persons with HDV, we estimate 35,059 (95% CI: 18,744-52,083) persons with HDV in Canada. In conclusion, we estimate 0.550 M and 35,059 persons living with CHB and HDV, respectively, in Canada in 2021.

Estimating the prevalence of hepatitis delta virus infection among adults in the United States: A meta-analysis.

BACKGROUND AND AIMS: Suboptimal awareness and low rates of hepatitis delta virus (HDV) testing contribute to underdiagnosis and gaps in accurate estimates of U.S. HDV prevalence. We aim to provide an updated assessment of HDV prevalence in the U.S. using a comprehensive literature review and meta-analysis approach. METHODS: A comprehensive literature review of articles reporting HBsAg seroprevalence and anti-HDV prevalence was conducted to calculate country-specific rates and pooled prevalence of CHB and HDV using meta-analyses. Country-specific CHB and HDV rate estimates were combined with number of foreign-born (FB) persons in the U.S. in 2022 from U.S. Census Bureau to estimate total numbers of FB with CHB and HDV, respectively. These estimates were further combined with updated estimates of U.S.-born persons with CHB and HDV to yield the total number of persons with CHB and HDV. RESULTS: In 2022, we estimated 1.971 million (M) (95% CI 1.547-2.508) persons with CHB; 1.547 M (95% CI 1.264-1.831) were FB and 0.424 M (95% CI: 0.282-0.678) were U.S.-born. The weighted average HDV prevalence among FB persons in the U.S. was 4.20% (64 938 [95% CI 33055-97 392] persons), among whom 45% emigrated from Asia, 25% from Africa, and 14% from Europe. When combined with updated estimates of U.S.-born persons with HDV, we estimate 75 005 (95% CI: 42187-108 393) persons with HDV in the U.S. CONCLUSIONS: Including both FB and U.S.-born persons, we estimated that 1.971 M and 75 005 persons were living with CHB and HDV, respectively, in the U.S. in 2022.

Survey of lived experiences and challenges in hepatitis B management and treatment.

Almost 300 million people are living with chronic hepatitis B infection worldwide and most remain undiagnosed and at risk for liver cancer. In 2015 the World Health Organization (WHO) developed guidelines for the prevention, care, and treatment of persons with chronic hepatitis B and in early 2023 began to work on updating these guidelines. In March 2023, a self-administered, anonymous online survey was launched, aiming to identify patient preferences related to the clinical management of hepatitis B including current management, treatment, and care experiences, preferences regarding engagement with providers, and preferences related to simplifying hepatitis B care access. A sample of 560 individuals living with hepatitis B (self-identified as HBsAg positive) from 76 countries completed the survey. Key findings demonstrated that less than half (49%, N = 268) of participants regularly visited a doctor to check the health of their liver (every 6-12 months), with 37% of participants prescribed antiviral medication by a specialist (82%, N = 167) or general practitioner (13%, N = 26). Participants reported not being actively involved in care decision making with their providers (42%, N = 217), with an overwhelming majority wanting to participate in hepatitis B management and treatment choices (85%, N = 435). Participants provided qualitative and quantitative details using open-ended responses within the survey about challenges with medication affordability and receiving care from a knowledgeable provider. Overall findings demonstrated key gaps in care, management, and treatment access related to hepatitis B: identifying these gaps can be used to identify areas for improvement along the care continuum for viral hepatitis. The survey found a need for the comprehensive simplification of clinical management and health care services related to hepatitis B. A thematic analysis of the open-ended survey responses highlighted major overarching themes including the cost and access burdens associated with hepatitis B management and treatment, and challenges in finding knowledgeable providers. Results from this mixed methods survey were used to inform the WHO hepatitis B guidelines update. Efforts should continue to explore public health approaches to address barriers and facilitators to testing, care, and treatment for people with hepatitis B to improve awareness of hepatitis B and access, care, and treatment among patients and providers.

Quality of life of people living with chronic hepatitis B: The role of social support system.

People living with chronic hepatitis B (PLCHB) are recommended to follow a lifelong monitoring regimen and face increased risk of liver cancer. Additionally, PLCHB frequently encounter stigma and discrimination, and relationship disruptions because of their chronic hepatitis B (CHB). Social support plays a key role in coping with chronic illnesses; however, this is inadequately assessed for PLCHB. This study aims to assess the physical, social, and mental impacts of living with CHB, the strategies PLCHB utilize to cope with their disease, and how social support-or lack of-impacts their journey with hepatitis B. The study was promoted through the Hepatitis B Foundation social media platforms, interested individuals filled-in a form expressing their interest to participate. The researcher conducted 24 telephone interviews in English, with PLCHB ≥18 years of age residing in the United States (U.S.) and Canada. Questions focused on the lived experiences of CHB and explored social support mechanisms that helped PLCHB. PLCHB experience a wide range of impacts (physical, social, and mental) that negatively affect their quality of life. Participants reported that receiving social support from their close network of individuals, hepatitis B community, or healthcare providers positively influenced their perspective on their future health and helped them adhere to treatment. The physical, social, and mental impacts of living with hepatitis B significantly affect the quality of life of PLCHB, calling for more research to document these impacts, and design integrated care models to address them. Social support appears to play an essential role in helping PLCHB cope with their disease and should be further studied.

Major open questions in the hepatitis B and D field - Proceedings of the inaugural International emerging hepatitis B and hepatitis D researchers workshop.

The early and mid-career researchers (EMCRs) of scientific communities represent the forefront of research and the future direction in which a field takes. The opinions of this key demographic are not commonly aggregated to audit fields and precisely demonstrate where challenges lie for the future. To address this, we initiated the inaugural International Emerging Researchers Workshop for the global Hepatitis B and Hepatitis D scientific community (75 individuals). The cohort was split into small discussion groups and the significant problems, challenges, and future directions were assessed. Here, we summarise the outcome of these discussions and outline the future directions suggested by the EMCR community. We show an effective approach to gauging and accumulating the ideas of EMCRs and provide a succinct summary of the significant gaps remaining in the Hepatitis B and Hepatitis D field.

Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States.

BACKGROUND: People with chronic hepatitis B (CHB) commonly experience social and self-stigma. This study sought to understand the impacts of CHB-related stigma and a functional cure on stigma. METHODS: Adults with CHB with a wide range of age and education were recruited from 5 countries and participated in 90-minute qualitative, semi-structured interviews to explore concepts related to CHB-associated stigma and its impact. Participants answered open-ended concept-elicitation questions regarding their experience of social and self-stigma, and the potential impact of reduced CHB-related stigma. RESULTS: Sixty-three participants aged 25 to 71 years (15 from the United States and 12 each from China, Germany, Italy, and Japan) reported emotional, lifestyle, and social impacts of living with CHB, including prejudice, marginalization, and negative relationship and work experiences. Self-stigma led to low self-esteem, concealment of CHB status, and social withdrawal. Most participants stated a functional cure for hepatitis B would reduce self-stigma. CONCLUSIONS: CHB-related social and self-stigma are widely prevalent and affect many aspects of life. A functional cure for hepatitis B may reduce social and self-stigma and substantially improve the health-related quality of life of people with CHB. Incorporating stigma into guidelines along with infectivity considerations may broaden the patient groups who should receive treatment.

The Impact of Living With Chronic Hepatitis B on Quality of Life: Implications for Clinical Management.

Living with chronic hepatitis B (CHB) has physical, social, and emotional impacts that often negatively affect patients' quality of life. These impacts are not usually captured during routine care. This article presents information on the impact of living with CHB and the importance of integrating health-related quality-of-life assessment into CHB care. Using a global online survey, people ages ≥18 living with CHB were asked about physical, social, and worry impacts. Of 1707 respondents, most were male (67%), < 45 years of age (81%); and 52% identified as Black. Of all participants, 66% reported physical impact, 55% reported social impact, and 49% reported worry impact of living with CHB. Those from Africa and the Western Pacific were most likely to report physical impact. Younger participants (18-45) and those not on treatment were significantly more likely to report physical and social impact. People living with CHB are impacted physically, socially, and emotionally, varied by demographic factors and disease experience. These impacts should be captured and addressed as part of routine CHB care.

Advancing research, awareness, screening, and linkage to care to eliminate HDV in the U.S.

HDV, which coinfects individuals living with HBV, is the most aggressive form of viral hepatitis. Compared with hepatitis B monoinfection, hepatitis delta is associated with more rapid progression to cirrhosis and an increased risk of liver cancer and death. Despite being a major contributor to hepatitis B-associated liver disease, hepatitis delta remains largely unknown to the general public, health care providers, and at-risk communities. Given the widespread lack of awareness and underdiagnosis of hepatitis delta in the US, the American Liver Foundation (ALF) and the Hepatitis B Foundation (HBF) convened a virtual Hepatitis Delta Roundtable Meeting on April 21 and 22, 2022. The Roundtable Panel included persons living with hepatitis delta, caregivers, liver disease specialists, primary care providers, state and federal public health professionals, and community-based organizations. The Panel identified several major challenges surrounding hepatitis delta, including a lack of awareness of hepatitis delta among the public and health care providers; complex risk-based testing protocols; a lack of accurate prevalence data; limited data on linkage to care; and inadequate communications among stakeholders. Potential strategies to address these challenges include improving and expanding education for different audiences; advocating for simplified protocols for hepatitis B screening with hepatitis delta reflex testing; expanding surveillance for hepatitis delta; requiring automated reporting and national notification; improving data sharing for research; and enhancing communications around hepatitis delta. The recent CDC recommendations for universal adult screening and vaccination against hepatitis B and the anticipated availability of new therapies for hepatitis delta present a unique opportunity to focus attention on this dangerous virus. The Roundtable Panel calls for urgent action to make significant progress in addressing hepatitis delta among individuals living with hepatitis B.

Opportunities to address gaps in early detection and improve outcomes of liver cancer.

Death rates from primary liver cancer (hepatocellular carcinoma [HCC]) have continued to rise in the United States over the recent decades despite the availability of an increasing range of treatment modalities, including new systemic therapies. Prognosis is strongly associated with tumor stage at diagnosis; however, most cases of HCC are diagnosed beyond an early stage. This lack of early detection has contributed to low survival rates. Professional society guidelines recommend semiannual ultrasound-based HCC screening for at-risk populations, yet HCC surveillance continues to be underused in clinical practice. On April 28, 2022, the Hepatitis B Foundation convened a workshop to discuss the most pressing challenges and barriers to early HCC detection and the need to better leverage existing and emerging tools and technologies that could improve HCC screening and early detection. In this commentary, we summarize technical, patient-level, provider-level, and system-level challenges and opportunities to improve processes and outcomes across the HCC screening continuum. We highlight promising approaches to HCC risk stratification and screening, including new biomarkers, advanced imaging incorporating artificial intelligence, and algorithms for risk stratification. Workshop participants emphasized that action to improve early detection and reduce HCC mortality is urgently needed, noting concern that many of the challenges we face today are the same or similar to those faced a decade ago and that HCC mortality rates have not meaningfully improved. Increasing the uptake of HCC screening was identified as a short-term priority while developing and validating better screening tests and risk-appropriate surveillance strategies.

The importance of triple panel testing for hepatitis B and the burden of isolated anti-hepatitis B core antibodies within a community sample.

Within the United States (US), 2.4 million individuals are living with chronic hepatitis B, but less than 20% are diagnosed. Isolated anti-hepatitis B core (iAHBc) antibodies indicate serology in an individual that is positive for anti-HBc antibodies, while negative for surface antigen (HBsAg) and surface antibodies (anti-HBs). A result of iAHBc could indicate a chronic occult bloodstream infection, necessitating further testing. This study assesses the prevalence and risk factors associated with anti-HBc and iAHBc within community high-risk screening in Greater Philadelphia. Participants (n = 177) were screened for HBsAg, anti-HBs, and anti-HBc during community screening events in 2022. Chi-square tables and Firth logistic regression were used to describe the data and to assess the odds of iAHBc. The findings indicate that there was an iAHBc prevalence of 7.3% (n = 13) within our study. The odds of anti-HBc were increased for immigrants from the Western Pacific (4.5%) and Africa (11.9%). Individuals born in Africa had 7.93 greater odds for iAHBc than those born in the Americas, and these odds are multiplied by 1.01 for every 1-year increase in age. Our data show a high burden of iAHBc within high-risk and often hard-to-reach communities. Triple panel screening should be incorporated into all HBV screening programs, in accordance with current Centers for Disease Control and Prevention (CDC) universal screening recommendations, to ensure a comprehensive picture of the disease burden and reduce the risk of missing people with occult hepatitis B and those at risk for viral reactivation or liver complications.

The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives.

BACKGROUND: An estimated 296 million individuals live with chronic hepatitis B worldwide, most have not been diagnosed and remain at risk of liver disease and cancer. People with hepatitis B often face discrimination that denies them employment or education opportunities, results in unfair treatment at work or in school, limits their ability to emigrate to certain countries, and in some cases prohibits them from serving in the military. Discrimination specific to hepatitis B has not been widely documented within the literature. This study aims to investigate and describe hepatitis B related discrimination, document discrimination occurring around the globe, and provide initial recommendations for addressing discrimination using key informant interviews. METHODS: Purposive and snowball sampling were used to identify potential key informants for qualitative interview. Key informants identified as community health leaders, public health scientists, doctors, and researchers, many of whom were also living with hepatitis B. Using a semi-structured guide, participants were asked to describe their experience and any challenges for people living with hepatitis B including marginalization and its' consequences. A codebook was used to guide the organization of data for analysis, and all transcripts N = 17 were double coded. RESULTS: The overarching themes identified from interviews demonstrate explicit experiences with discrimination of those directly affected, the psychological responses, and the negative health outcomes associated with the unvirtuous cycle of discrimination. All key informants reported on the substantial quality of life implications and often poorer health outcomes resulting from hepatitis B discrimination. Participants also identified the significant impact of hepatitis B discrimination occurring within a range of education-based services across several countries as well as military exclusion or removal if individuals are found to have hepatitis B. CONCLUSION: Our data demonstrate that hepatitis B discrimination has a significant impact. Discrimination can occur at various points in life from education, to seeking employment, to marriage, to restrictions on entry, travel and stay in other countries. This study demonstrates the impact of discrimination and the need for future research that can lead to policy change and protections for people living with and impacted by hepatitis B.

Comparing lengths and inclusion of information in storytelling videos: Implications for Hepatitis B education.

Objectives: This study examined whether adding disease-specific facts into storytelling videos and altering video length would lead to differences in overall ratings of the video and the storyteller, as well as hepatitis B prevention beliefs, among Asian American and Pacific Islander adults. Methods: A sample of Asian American and Pacific Islander adults (N = 409) completed an online survey. Each participant was randomly assigned to 1 of 4 conditions that varied in video length and use of additional hepatitis B facts. Linear regressions were used to examine differences in outcomes (i.e., video rating, speaker rating, perceived effectiveness, hepatitis B prevention beliefs) by conditions. Results: Condition 2, which added facts to the original full-length video, was significantly related to higher speaker ratings (i.e., the storyteller's rating) compared to Condition 1, the original full-length video with no added facts, p = 0.016. Condition 3, which added facts to the shortened video, was significantly related to lower overall video ratings (i.e., how much participants liked the videos overall) compared to Condition 1, p = 0.001. There were no significant differences in higher positive hepatitis B prevention beliefs across conditions. Conclusions: Results suggest that adding disease-specific facts to storytelling for patient education may improve initial perceptions of storytelling videos; however, more research is needed to examine long-term effects. Innovation: Aspects of storytelling videos such as length and additional information have been rarely explored in storytelling research. This study provides evidence that exploring these aspects is informative to future storytelling campaigns and disease-specific prevention.