Hepatitis B discrimination: global responses requiring global data.

Over 250 million individuals live with chronic hepatitis B (CHB) infection worldwide. A significant proportion of these people often face discrimination defined as the unjust, unfair, or prejudicial treatment of a person on the grounds of their hepatitis B status. Hepatitis B related discrimination has not been widely documented in the literature. This study aims to describe the lived experience of discrimination, document its impact, and shed light on its consequences. A hepatitis B discrimination registry was launched to record self-reported discrimination associated with hepatitis B. The registry included brief demographic questions (age, gender, country of origin), discrimination-specific questions (where, when, and how discrimination occurred), and open-ended questions to detail specific experiences. The registry was distributed to hepatitis B patient/people-focused listservs, social media networks, and community-based organizations around the globe. Descriptive data were analyzed including comparative analysis by country and type of discrimination occurring along with qualitative data (open-ended responses) which were analyzed using thematic analysis techniques A total of 569 individuals responded to the survey between May 2021 and December 2023. Individuals identified as residing in the Philippines (34%; N = 194), Nigeria (11%; N = 60), Pakistan (8%; N = 45), India (6%, N = 34), Uganda (5%; N = 31), the United States of America (4%, N = 26), Ghana (3%; N = 15), Ethiopia (2%; N = 14), and other countries in smaller number with a total of 65 countries reported discrimination at least by one individual. Of these, 461 individuals shared details about their experiences of discrimination with most relating to restrictions on access to work visas, followed by in-country hepatitis B-related employment restrictions, educational-based discrimination, discrimination within the community and health facilities, and the emotional impact of hepatitis B discrimination. This is the largest primary collection of hepatitis B-associated discrimination events and highlights how hepatitis B discrimination clearly has a significant impact on individuals' lives and limits economic opportunities regardless of physical symptoms. Such impacts likely act as barriers to diagnosis and engagement in care, so need to be addressed to achieve the global hepatitis B elimination goals. The data highlight a need for global, national responses and more systematic responses to discrimination experienced by people with hepatitis B.

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.

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.

Priority populations' experiences of isolation, quarantine and distancing for COVID-19: protocol for a longitudinal cohort study (Optimise Study).

INTRODUCTION: Longitudinal studies can provide timely and accurate information to evaluate and inform COVID-19 control and mitigation strategies and future pandemic preparedness. The Optimise Study is a multidisciplinary research platform established in the Australian state of Victoria in September 2020 to collect epidemiological, social, psychological and behavioural data from priority populations. It aims to understand changing public attitudes, behaviours and experiences of COVID-19 and inform epidemic modelling and support responsive government policy. METHODS AND ANALYSIS: This protocol paper describes the data collection procedures for the Optimise Study, an ongoing longitudinal cohort of ~1000 Victorian adults and their social networks. Participants are recruited using snowball sampling with a set of seeds and two waves of snowball recruitment. Seeds are purposively selected from priority groups, including recent COVID-19 cases and close contacts and people at heightened risk of infection and/or adverse outcomes of COVID-19 infection and/or public health measures. Participants complete a schedule of monthly quantitative surveys and daily diaries for up to 24 months, plus additional surveys annually for up to 48 months. Cohort participants are recruited for qualitative interviews at key time points to enable in-depth exploration of people's lived experiences. Separately, community representatives are invited to participate in community engagement groups, which review and interpret research findings to inform policy and practice recommendations. ETHICS AND DISSEMINATION: The Optimise longitudinal cohort and qualitative interviews are approved by the Alfred Hospital Human Research Ethics Committee (# 333/20). The Optimise Study CEG is approved by the La Trobe University Human Ethics Committee (# HEC20532). All participants provide informed verbal consent to enter the cohort, with additional consent provided prior to any of the sub studies. Study findings will be disseminated through public website (https://optimisecovid.com.au/study-findings/) and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05323799.

COVID-19 disaster recovery capitals: A conceptual framework to guide holistic and strengths-based support strategies.

ISSUE ADDRESSED: The COVID-19 pandemic bears many similarities to other disasters such as bushfires, earthquakes and floods. It also has distinctive features including its prolonged and recurrent nature and the social isolation induced by pandemic responses. Existing conceptual frameworks previously applied to the study of disaster, such as the Recovery Capitals Framework (RCF), may be useful in understanding experiences of the COVID-19 pandemic and in guiding agencies and governments tasked with supporting communities. METHODS: This paper presents an analysis of interviews conducted with residents of the Australian state of Victoria in 2020-2021. The RCF was used to analyse how participant experiences and well-being were influenced by seven forms of capital-social, human, natural, financial, built, cultural and political-with particular focus on the interactions between these capitals. RESULTS: Social capital featured most prominently in participants' accounts, yet the analysis revealed important interactions between social and other capitals that shaped their pandemic experiences. The RCF supported a strengths-based and holistic analysis while also revealing how inequities and challenges were compounded in some cases. CONCLUSIONS: Findings can be leveraged to develop effective and innovative strategies to support well-being and disrupt patterns of compounding inequity. Applying the RCF in the context of COVID-19 can help to link pandemic research with research from a wide range of disasters. SO WHAT?: In an increasingly complex global landscape of cascading and intersecting disasters including pandemics, flexible and nuanced conceptual approaches such as the RCF can generate valuable insights with practical implications for health promotion efforts.

Surveillance of Vermont wildlife in 2021-2022 reveals no detected SARS-CoV-2 viral RNA.

Previous studies have documented natural infections of SARS-CoV-2 in various domestic and wild animals. More recently, studies have been published noting the susceptibility of members of the Cervidae family, and infections in both wild and captive cervid populations. In this study, we investigated the presence of SARS-CoV-2 in mammalian wildlife within the state of Vermont. 739 nasal or throat samples were collected from wildlife throughout the state during the 2021 and 2022 harvest season. Data was collected from red and gray foxes (Vulpes vulples and Urocyon cineroargentus, respectively), fishers (Martes pennati), river otters (Lutra canadensis), coyotes (Canis lantrans), bobcats (Lynx rufus rufus), black bears (Ursus americanus), and white-tailed deer (Odocoileus virginianus). Samples were tested for the presence of SARS-CoV-2 via quantitative RT-qPCR using the CDC N1/N2 primer set and/or the WHO-E gene primer set. Surprisingly, we initially detected a number of N1 and/or N2 positive samples with high cycle threshold values, though after conducting environmental swabbing of the laboratory and verifying with a second independent primer set (WHO-E) and PCR without reverse transcriptase, we showed that these were false positives due to plasmid contamination from a construct expressing the N gene in the general laboratory environment. Our final results indicate that no sampled wildlife were positive for SARS-CoV-2 RNA, and highlight the importance of physically separate locations for the processing of samples for surveillance and experiments that require the use of plasmid DNA containing the target RNA sequence. These negative findings are surprising, given that most published North America studies have found SARS-CoV-2 within their deer populations. The absence of SARS-CoV-2 RNA in populations sampled here may provide insights in to the various environmental and anthropogenic factors that reduce spillover and spread in North American's wildlife populations.

Pathway to global elimination of hepatitis B: HBV cure is just the first step.

Hepatitis B (HBV) is a major cause of global morbidity and mortality, and the leading cause of liver cancer worldwide. Significant advances have recently been made toward the development of a finite HBV treatment that achieves permanent loss of HBsAg and HBV DNA (so-called "HBV cure"), which could provide the means to eliminate HBV as a public health threat. However, the HBV cure is just one step toward achieving WHO HBV elimination targets by 2030, and much work must be done now to prepare for the successful implementation of the HBV cure. In this review, we describe the required steps to rapidly scale-up future HBV cure equitably. We present key actions required for successful HBV cure implementation, integrated within the World Health Organization (WHO) Global Health Sector Strategy (GHSS) 2022-2030 framework. Finally, we highlight what can be done now to progress toward the 2030 HBV elimination targets using available tools to ensure that we are preparing, but not waiting, for the cure.

Surveillance of Vermont wildlife in 2021-2022 reveals no detected SARS-CoV-2 viral RNA.

Previous studies have documented natural infections of SARS-CoV-2 in various domestic and wild animals. More recently, studies have been published noting the susceptibility of members of the Cervidae family, and infections in both wild and captive cervid populations. In this study, we investigated the presence of SARS-CoV-2 in mammalian wildlife within the state of Vermont. 739 nasal or throat samples were collected from wildlife throughout the state during the 2021 and 2022 harvest season. Data was collected from red and gray foxes ( Vulpes vulples and Urocyon cineroargentus , respectively), fishers ( Martes pennati ), river otters ( Lutra canadensis ), coyotes ( Canis lantrans ), bobcats ( Lynx rufus rufus ), black bears ( Ursus americanus ), and white-tailed deer ( Odocoileus virginianus ). Samples were tested for the presence of SARS-CoV-2 via quantitative RT-qPCR using the CDC N1/N2 primer set and/or the WHO-E gene primer set. Our results indicate that no sampled wildlife were positive for SARS-CoV-2. This finding is surprising, given that most published North America studies have found SARS-CoV-2 within their deer populations. The absence of SARS-CoV-2 RNA in populations sampled here may provide insights in to the various environmental and anthropogenic factors that reduce spillover and spread in North American's wildlife populations.

Assessment of a primary care e-support package of automated case finding, simplified treatment algorithm and decision support to increase hepatitis B treatment uptake in primary care clinics in Australia (SIMPLY-B Study): protocol for a pilot evaluation.

INTRODUCTION: Despite the availability of effective, subsidised hepatitis B treatment, linkage to care and treatment rates remain very low globally. In Australia, specially trained primary care physicians (general practitioner, GPs) can prescribe hepatitis B treatment, however, most hepatitis B care occurs in specialist clinics. Increasing hepatitis B management by GPs in primary care clinics is essential to achieve national hepatitis B linkage to care and treatment targets by 2030.This pilot study determines the feasibility, acceptability and effectiveness of Simply B, a novel GP hepatitis B e-support package designed to increase hepatitis B management by GPs in primary care clinics. METHODS AND ANALYSIS: This study will be conducted in three parts:Part A: A prospective open-label pilot intervention study, comparing the proportion of people with hepatitis B who are managed by their GP in primary care clinics before, 12 months and 24 months after implementation of the Simply B electronic hepatitis B support package.Part B: A nested qualitative health services feasibility study using semistructured interviews and thematic analysisPart C: Cost-effectiveness analysis. ETHICS AND DISSEMINATION: This study has received ethics approval by St Vincent's Hospital. Data management and analysis will be centralised through the Department of Gastroenterology, St Vincent's Hospital. TRIAL REGISTRATION NUMBER: NCT05614466.

An Intersectional Approach to Hepatitis B.

Hepatitis B is a chronic condition, primarily associated with hepatitis B viral infection in early life. The failure of prevention and appropriate management can lead to subsequent liver cirrhosis and cancer. Hepatitis B most commonly affects people born in Asia and Sub-Saharan Africa and their global diasporas. The physical, psychological, and social impacts of hepatitis B are strongly influenced by sex and gender. Inequities in access to timely, sensitive diagnosis and effective management arise from interactions between structural inequalities related to race, ethnicity, Indigenous/settler status, class, and geography. The biomedical response to hepatitis B has led to advances in prevention, diagnosis, and treatment, but many affected communities have explanatory health belief models that differ from that of biomedicine. We argue that an intersectional approach, led by affected people and communities, can integrate biomedicine with the lived experience and social context that give purpose to and shape all personal, communal, clinical, and public health responses to hepatitis B. This approach has the potential to enable a consciously equitable, effective response to the biopsychosocial complexities of hepatitis B, improve the health and wellbeing of people living with hepatitis B, and reduce hepatitis B-associated mortality.

Mapping the delivery of interventions for vaccine-preventable infections in pregnancy in Victoria, Australia.

BACKGROUND: Standard care for pregnant women includes universal screening for hepatitis B, and administration of influenza and pertussis vaccination to women and hepatitis B infant vaccination. This study explored how perinatal services relating to the prevention of these vaccine-preventable diseases are delivered to women and their infants in Victoria, Australia. METHODS: Two online surveys investigated service delivery for the prevention of influenza, pertussis and hepatitis B to identify barriers to optimal care during January-June 2021; (1) The Birthing Hospitals Survey captured facility-level information about service delivery for influenza and pertussis vaccination, and interventions to prevent mother-to-child-transmission of chronic hepatitis B (CHB); and (2) The Healthcare Providers Survey captured individual staff perceptions and knowledge in community and hospital settings. RESULTS: Thirty-four hospital unit managers (61%) completed The Birthing Hospitals Survey . One-hundred and forty participants completed The Healthcare Providers Survey . Half of the birthing hospitals provided influenza (50%) and pertussis (53%) vaccinations to pregnant women, and 53% provided an infectious diseases service for women with CHB. Barriers to optimal care delivery included reliance on pregnant woman's self-report to confirm influenza, pertussis vaccination and CHB status, lack of standardised reporting, inadequate workforce training, poor communication between services, and lack of guideline-based clinical care for mothers with CHB and their infants. Three hospitals reported 'stock out' of hepatitis B immunoglobulin (HBIG). CONCLUSION: Coordinated and standardised system and clinical care improvements are required to provide equitable care for pregnant women and their infants, including training and education for healthcare providers, improving data capture and communication among health services.

The freighted social histories of HIV and hepatitis C: exploring service providers' perspectives on stigma in the current epidemics.

A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition.This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.

Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B.

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology - in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.

Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses.

In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families' own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right.

Exploring the Public Health and Social Implications of Future Curative Hepatitis B Interventions.

Hepatitis B is a significant global health issue where the 296 million people estimated to live with the infection risk liver disease or cancer without clinical intervention. The World Health Organization has committed to eliminating viral hepatitis as a public health threat by 2030, with future curative hepatitis B interventions potentially revolutionizing public health responses to hepatitis B, and being essential for viral hepatitis elimination. Understanding the social and public health implications of any cure is imperative for its successful implementation. This exploratory research, using semi-structured qualitative interviews with a broad range of professional stakeholders identifies the public health elements needed to ensure that a hepatitis B cure can be accessed by all people with hepatitis B. Issues highlighted by the experience of hepatitis C cure access include preparatory work to reorientate policy settings, develop resourcing options, and the appropriateness of health service delivery models. While the form and complexity of curative hepatitis B interventions are to be determined, addressing current disparities in cascade of care figures is imperative with implementation models needing to respond to the cultural contexts, social implications, and health needs of people with hepatitis B, with cure endpoints and discourse being contested.

Women with hepatitis B: how mothers with chronic hepatitis B understand and experience the prevention of mother-to-child transmission interventions in Victoria, Australia.

BACKGROUND: Mother-to-child transmission (MTCT) of hepatitis B can be prevented with targeted interventions; however, MTCT continues to occur in Australia and globally. This qualitative research investigated how mothers with chronic hepatitis B (CHB) understand and experience interventions for the prevention of MTCT of CHB (PMTCT-CHB) in Victoria, Australia. METHODS: Semi-structured interviews were conducted with women with CHB. Participants were recruited through purposive and snowballing sampling. Interviews explored the women's experience of care for themselves and their infants aimed at PMTCT-CHB. Interviews were conducted over the phone with a qualified interpreter where required. The consolidated criteria for reporting qualitative research framework was used with data thematically analysed. This study was co-designed with mothers with CHB through a Community Advisory Group established for this research; coordinated and supported by LiverWELL and the researchers. RESULTS: Sixteen women were interviewed. Although most women understood the purpose of hepatitis B vaccination, there were significant gaps in information and education provided to mothers regarding PMTCT-CHB. These gaps included understanding of the extent of protection of vaccination, breastfeeding with CHB, post-vaccination testing for infants and lack of clarity of the woman's own hepatitis B status. There was notable fear and worry associated with hepatitis B transmission, with emotional support for mothers identified as a major gap in service delivery. Additionally, some women experienced stigma and discrimination due to their hepatitis B and refugee status. CONCLUSIONS: This study explored how mothers with CHB understand and experience interventions to prevent MTCT. Our findings reveal substantial gaps in delivery of information and care in the context of PMTCT-CHB in Victoria. Our findings can support development of evidence-based interventions and systems to improve healthcare for mothers with CHB and their infants, and thereby reduce possible CHB transmission and other negative outcomes, including stigma and discrimination.