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



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.


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.


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.


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.

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Hepatitis B virus (HBV) is a major global health concern; an estimated 296 million people worldwide were living with chronic hepatitis B (CHB) in 2019 [1, 2]. Stigma and discrimination are often experienced by people living with CHB, particularly in some Asian and African countries where HBV prevalence is high and several Asian immigrant communities in North America [3,4,5,6,7] and Australia [7, 8].

HBV-associated social stigma describes situations where people stigmatize those with hepatitis B [9,10,11,12], and can present as discrimination, judgment, marginalization, or denial of treatment [4,5,6, 13,14,15,16].

Self-stigma refers to when people with CHB internalize negative beliefs, which negatively impacts their emotions and scope of activities [9, 17,18,19]. Experiencing discrimination (i.e. social stigma) is associated with negative feelings, self-blame, and isolation (i.e. self-stigma) and lowers health-related quality of life (HRQoL) [12, 13, 15, 20]. The psychosocial effects of self-stigma, such as fear of disease progression or of transmitting the infection and potential consequent shame, depression, and anxiety, all substantially impact people living with CHB [12, 15,16,17, 21, 22].

CHB-related self-stigma hampers diagnosis and effective treatment by reducing willingness to present for diagnostic and clinical monitoring [6, 12, 22,23,24] and treatment initiation and adherence. This can increase likelihood of transmission [15] and poses a barrier for viral hepatitis elimination [25]. Hence, understanding, reduction, and, ultimately, elimination of CHB-associated stigma are critical [26]. Stigma is not currently modeled into decision-making for screening and treatment guidelines.

In moving to a functional cure treatment program for HBV [27] and an era emphasizing patient focus in drug development [28], it is important to have a thorough understanding of social and self-stigma and their impact on the lives of people with HBV and the management and treatment of CHB. This qualitative study was conducted to comprehensively understand experiences of social and self-stigma among people with CHB in countries with varying HBV prevalence in Asia, Europe, and North America, and identify the impact of a potential functional cure for HBV on self-stigma.


Qualitative semi-structured interviews exploring CHB-associated stigma and its impact on daily life were used. Adults aged ≥ 18 years with clinically confirmed CHB who were either treatment naïve or treated were recruited from China, Germany, Italy, Japan, and the United States. Additionally, in China and Japan, adults aged ≥ 18 years with prescription, doctor’s note, or participant-provided photographs of medication were also recruited in the study. Exclusion criteria included having other clinical conditions associated with self-stigma (e.g. chronic hepatitis C, HIV), and psychiatric or other conditions that might impair ability to participate in the study.

Participants were recruited by a recruitment agency using existing patient associations and social media and were reimbursed for time and travel. Purposive sampling aimed to recruit an ethnically diverse and representative sample including people of different ages, employment statuses, and educational backgrounds.

Each individual participated in a 90-minute, semi-structured interview (face-to-face or telephone/web-assisted) in the local language, conducted by trained qualitative interviewers. The objectives were to understand and document experience of CHB-associated social and self-stigma, using a semi-structed interview guide that comprised open-ended concept-elicitation questions and probes regarding (i) feelings, experiences, and events of stigma and self-stigma; (ii) experiences of social stigma that influence self-stigma; (iii) the most important and/or bothersome aspects of self-stigma; (iv) impact on HRQoL and CHB management; and (v) potential impacts on daily life of removing or reducing social and self-stigma.

Conceptual saturation analysis was performed based on International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Task Force Best Practice Guidelines for Establishing Content Validity [29]. For concept analysis, interview transcripts were divided into 3 small sets for each country (n = 4–5 in each set) in the sequential order in which they were performed; spontaneously elicited self-stigma concepts were compared. Concepts arising in Set 1 and Set 2 (not Set 3) would indicate saturation had been achieved. Analyses based on thematic methods were conducted using ATLAS.ti software (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) [30, 31].

The study protocol was reviewed and approved by relevant institutional ethics review boards, and participants completed an informed consent form before being interviewed.



Sixty-three people with CHB (15 from the United States and 12 each from China, Germany, Italy, and Japan) participated in interviews between February 2019 and March 2020. The mean age was 49 (range 25–71) years, and 62% were female (Table 1). In all countries, participants had a wide range of educational backgrounds, employment statuses, treatment modalities, and treatment durations (Table 1). In the United States, more participants reported Asian ethnicity (36%) than in European countries (8% in Germany and 0% in Italy).

Table 1 Demographic and clinical characteristics of participants

Impact of living with CHB

Participants were asked to describe their experience of living with CHB. Five self-stigma concepts emerged: secrecy/concealment, withdrawal/social isolation, devaluation/inferiority/worthlessness, marginalization/alienation, and shame/guilt. Saturation was fully achieved (i.e. additional interviews would not provide new objective-relevant information [32]) in China, Germany, Italy, and the United States, with all 5 concepts spontaneously arising in the first or second set of interviews. In Japan, saturation was achieved for 3 of the 5 self-stigma concepts with devaluation/inferiority/worthlessness and marginalization/alienation not mentioned by any participants in Japan, likely due to participants not having disclosed their CHB status to others.

The concepts that emerged showed living with CHB has emotional, lifestyle, and social impacts (Table 2 and Additional File 1: Supplementary Table 1). Emotional impacts, such as anxiety/fear and embarrassment, were reported in all countries. Low self-esteem, secrecy/concealment, sadness, depression, difficulty accepting or being overwhelmed by their diagnosis, and feelings of anger, betrayal, denial, and not feeling “normal” were also reported.

Table 2 Concepts that emerged when participants were asked about their experience of living with CHB

Reported lifestyle limitations of living with CHB included reduced ability or desire to exercise (“I used to do exercise, but now I can’t do it anymore at that level. I get tired immediately”), dietary limitations (“The illness has an impact on the liver and…I have changed my diet”; “My diet has to be healthy and light”; “No spicy food, seafood, snacks”), and avoidance of alcohol intake (“I have to avoid alcohol. I don’t mean to get drunk, but a glass of wine would be nice”; Table 2 and Additional File 1: Supplementary Table 1). Participants also reported increased medical appointments and need for time off, unwillingness to share cutlery, inability to stay up late or donate blood, and reduced productivity at work due to fatigue. Where participants had not disclosed their CHB status to their colleagues, less of an impact on work life was reported.

Social impacts of living with CHB were isolation, strain on relationships, and problems with intimacy. These were either self-imposed (“Others can stay up late, but…for my physical considerations…I try to go to bed early”) or external (“they [relatives] may tell their children not to play with me…and tell the children not to get close to me”; “I have lost someone who could have become a serious relationship. She read my physical exam report and her attitude changed”).

Impact of CHB-related social stigma

Some participants initially described different understandings of the term “stigma” (Table 3 and Additional File 1: Supplementary Table 2). However, once the interviewer provided a pre-agreed definition “to stigmatize someone is to treat them negatively because they are perceived to be different,” the term was recognized by all participants, who were then able to describe experiences of social stigma. Impacts of social stigma were judgment/prejudice; negative impacts on relationships with partners, family, or friends; lack of awareness and understanding from others; avoidance or exclusion by others; others not wanting to share food, drinks, or utensils; negative experiences at work or at a medical facility; and being denied career opportunities (Table 3 and Additional File 1: Supplementary Table 2).

Table 3 Selected comments reflecting participants’ understanding and experiences of CHB-related stigma

Impact of CHB-related self-stigma

Participants were asked to describe their understanding and experience of self-stigma (Table 4) and its impact. Most participants provided a definition of self-stigma without help, except in Japan, where most participants had not heard of the term or were unable to offer a definition. This may have been due to the term not having a direct translation to Japanese (“stigma” was translated as “psychological distress”). Once the interviewer provided a pre-agreed definition (“self-stigma is any time you think negatively about yourself based on what other people might think about you because of your hepatitis B”), all participants, including those in Japan, understood the term.

Table 4 Selected comments reflecting participants’ understanding and experience of CHB-related self-stigma

Concepts related to self-stigma mostly related to secrecy and CHB-status concealment, and concerns about other people’s perceptions. Responses included “I wouldn’t want to tell anybody because I feel like people will treat me different [because they will think I’m] contagious” and “I thought of telling my friends but didn’t do it…I was afraid people would keep a distance from me” (Table 4 and Additional File 1: Supplementary Table 3). One participant summarized their self-held belief as “eternal internal reluctance or stigma” they were constantly living with because of CHB. Feelings of low self-esteem, devaluation, and worthlessness were often expressed (“I felt like I was different. I was ashamed. Especially at the doctor, because I always have to say that I have this illness”; “I feel inferior to other people”; “I feel like a burden to my family. I’m rubbish, just like dust”). Shame and guilt were also reported by some participants (“I have ruined my life for not being careful. I blamed myself for it”), although others who were infected through blood transfusions or inadvertent contact did not feel self-blame (“It’s not my fault…that I have this kidney disease or this hepatitis B”). Participants described how self-stigma had resulted in withdrawal, social isolation, and avoidance of dating and social situations (“At the beginning I couldn’t even imagine to kiss someone or get closer to someone. I didn’t want to infect other people”; “I don’t make too many friends because I am afraid of discrimination”; “I have to regulate myself from eating communally with non-family members”).

Concepts regarding CHB-related self-stigma were more often reported by participants in China, Germany, Italy, and the United States, and rarely reported by those in Japan. This may have been not only due to language/conceptual differences but because many Japanese participants had not disclosed their HBV status to others (“I don’t feel much about [self-stigma] because I don’t talk about the disease to others”). Moreover, some participants in the United States and Germany whose CHB status had no impact on their work life added it was because they had not disclosed their CHB status (“I haven’t had to submit blood samples or lab results. In [the US], employers…cannot do that for legal reason[s]. So…I haven’t been discriminated [against regarding] employment application[s]”; “I didn’t tell anyone about my illness, and I was always able to do my work properly”).

Self-stigma–related feelings of fear, shame, embarrassment, secrecy, inferiority, and isolation seemed to result from social stigmatization. One reason for stigmatization is lack of awareness (or misunderstanding) of how HBV is transmitted or acquired (“People [in the US] generally don’t really know the difference between [hepatitis] types. The most common one talked about here is hepatitis C, which is commonly associated with IV drug use, unsafe sex practices, other unsafe behaviors, which in turn cause a lot of people to judge other people [with CHB] based on those preconceived notions”; “I feel like people will treat me different…like I’m a walking virus that’s contagious, that will hurt them”).

The participants reported not taking up career opportunities due to CHB-related social and self-stigma (“I’ve avoided some professions [like the medical field], knowing that I wouldn’t want to deal with anyone knowing. I remember hearing a long time ago that there were medical schools that would not accept students with communicable diseases, especially hepatitis B”; “I can’t work in the industries involving food, such as supermarkets and childcare. I need to check liver function for this kind of work”).

When asked of the impact of reducing self-stigma, most participants stated they would feel less worried about their future, less isolated, and that they could return to a “normal self” and “normal” lives, with reduced fear of rejection or judgment.

Understanding of terms related to CHB severity and prognosis

Complete cure of CHB (i.e. eradication of viral covalently closed circular DNA) is not a realistic goal with current treatment options [33]; “functional cure,” defined as durable loss of hepatitis B surface antigen with or without seroconversion is considered the optimal treatment endpoint and is associated with significantly improved patient outcomes [27].

Participants were asked whether they were aware of and understood the terms “viral load” and “functional cure.” Up to two-thirds of participants could provide a definition of “viral load”; while none to half of participants in each country could provide an accurate definition of “functional cure.” No link was identified in any of the countries between participants’ education level or time since diagnosis and their understanding and awareness of either term.

In China, non-scientific terms “Little 3” and “Big 3” are typically used to characterize stages of CHB infection [34, 35]. “Little 3” refers to hepatitis B e antigen (HBeAg)–negative or HBeAg-positive status with low HBV DNA, whereas “Big 3” refers to HBeAg-positive status with high HBV DNA and higher risk of liver fibrosis. All participants from China were aware of these terms and able to discuss differences between, and implications related to, the 2 terms. Most participants believed “Little 3” was a better prognosis than “Big 3,” and some felt their CHB-related self-stigma increased if diagnosed with “Big 3.”

Treatment expectations in relation to self-stigma

When asked how they would feel about a potential medication that could cure or achieve functional cure for CHB, the majority of participants who had self-stigma viewed it positively and felt it would reduce self-stigma (“My self-stigma would change because if I don’t have it and it [can’t] be accounted for, and it’s not transmissible, I can go back to who I was. I don’t need to have the fear of rejection”; “Of course. I would feel like a normal person instead of a patient. I would no longer have a stigma”; “I would be more positive”; “I think it would be a beautiful thing, knowing that those thoughts about myself are gone”; Additional File 1: Supplementary Table 4).


To understand impacts of CHB-associated social and self-stigma around the world, participants with a range of ages, treatment experiences, and socioeconomic status were recruited from countries in Asia, Europe, and North America to participate in this study. Findings showed CHB had wide-ranging impacts on all aspects of participants’ lives: social stigma was prevalent, affecting people in all countries included in this study, as was self-stigma, which was typically expressed as guilt, shame, and inferiority. Experiences of self-stigma included concealment of CHB status, social isolation, negative experiences at work and missed career opportunities, and relationship problems with family, friends, and/or intimate partners.

This study supported that, in all countries included, CHB-related social stigma is associated with strongly negative feelings, which typically manifest as self-stigma. Strong impacts of social and self-stigma were reported from all countries. Low self-esteem was widely reported, and most participants in all countries were cautious about disclosing their CHB status. When disclosed, it was only to close family or trusted friends.

These fears were not unfounded, as shown by these participants’ experiences and other reports. A survey among nurses in Japan revealed unwillingness to accept HBV/hepatitis C virus–infected colleagues due to stigma regarding infection routes and potential for nurse-to-patient transmission [36]. In China, although laws reducing access of HBV-infected people to employment and educational opportunities were amended between 2008 and 2010, stigmatization still occurs in workplaces, education, health care settings, and daily life [15, 22, 34]. Some employers continue to perform liver function testing through “health checks” [16], which further institutionalizes discrimination. Even in the United States, despite Centers for Disease Control and Prevention guidelines and legal protections, HBV-infected health care students face discriminatory policies, such as not being able to graduate medical school or restricted clinical training [5], with one respondent to a global Hepatitis B Foundation survey told to leave the US military due to HBV [14]. Participants in China reported the most concepts for each topic overall (with these topics very similar to those reported previously in a large sample [13]), which highlights persistent HBV-related stigma in China, especially in rural areas and in those with lower socioeconomic status [4, 22]. This is likely related to decades of sanctioned discrimination and culturally ingrained misperceptions about hepatitis B. By contrast, this study and previous studies showed people with CHB in Europe and North America are likely to experience overlapping, multiple levels of stigma based on social identities and discrimination (also called intersectional stigma), with HBV transmission frequently linked to high-risk sexual practices or sharing drug paraphernalia [4, 34].

Participants in all countries frequently characterized their experiences of social stigma as based on lack of understanding and fear of transmission. As shown in this and previous studies [13, 15, 20], social (and therefore self-) stigma leads to concealing HBV status, which can result in reduced medical follow-up or treatment adherence [6, 12, 22, 23] for fear of people finding out their CHB status. Increased, accurate public health messaging and education about HBV transmission would likely reduce social stigma [37] and therefore self-stigma [12]. Findings from this study and other studies also suggest a functional cure for CHB would be likely to reduce self-stigma and thereby substantially improve HRQoL [10, 38]. These findings will be used to develop a patient-reported outcome instrument to evaluate, among other resources, the impact on self-stigma and HRQoL of a treatment that achieves functional cure of HBV.

This study had several limitations. Specifically, identifying cultural effects on stigma-related experiences was not the objective of the study, and as participant numbers in each country were limited, country-specific conclusions cannot reliably be drawn. Nevertheless, common and country-specific themes emerged. In some countries, terminology used in this study had no direct or commonly understood translation in the relevant language. To address this, interviewers explained terminology to participants if they did not understand it before asking them to describe their experiences. Study strengths included offering telephone or web-assisted interviews to remove the anticipated barrier to participation in a face-to-face interview. The open-ended nature of questions ensured participants would volunteer descriptions of their experiences, so concepts and responses reported here emerged largely unprompted. Another strength was inclusion of participants from 5 countries from 3 geographic regions. Although the sample size for each country was relatively small, the total number of participants (for a qualitative study) of different ages, sexes, and socioeconomic statuses was relatively large and provided information from different cultural settings around the globe. Saturation achievement in the conceptual saturation analysis indicated that a sufficiently large sample was interviewed in this study.

In conclusion, CHB-related social and self-stigma are widely prevalent globally, often driven by lack of knowledge about HBV transmission routes and medical education regarding lifestyle limitations. The most common impacts of self-stigma included concealment of CHB status to avoid judgment and social isolation. Reducing self-stigma would help people with CHB feel more positive and less isolated and to return to their “normal” lives. Findings from this study support the concept that a treatment that could achieve functional cure would likely reduce social and self-stigma (particularly people’s fears about HBV transmission), which would improve HRQoL in people living with CHB. Considering both the impact of stigma on patients and the infectious nature of the disease could markedly change screening and treatment guidelines.

Availability of data and materials

The datasets supporting the conclusions of this article are included within the article and its additional files.



Chronic hepatitis B


Hepatitis B e antigen


Hepatitis B virus


Health-related quality of life


International Society for Pharmacoeconomics and Outcomes Research


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Medical writing support was provided by Kimberly Dittmar, PhD, and Samantha Santangelo, PhD, of Cello Health Communications/MedErgy, and was funded by Janssen Global Services, LLC.


This study was supported by Janssen Global Services, LLC, and Janssen employees contributed to the design of the study; to the collection, analysis, and interpretation of data; and to writing the manuscript.

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Authors and Affiliations



All authors reviewed and approved the final manuscript for submission. EC contributed to the study concept, study design, data interpretation, and writing of the manuscript. JW contributed to the study design, methods, and manuscript review. CC contributed to the study design, data collection, and data analysis. MT, AFS, QN, HY, MC, MB, FVB, QX, DL, and SW contributed to the study design and writing of the manuscript. CM, HK, JM, and HP contributed to the study design, data collection, data analysis, data interpretation, and writing of the manuscript. YL, QC, and TI contributed to the data interpretation and writing of the manuscript. US, MB-M, AVK, YT, AL, TI, OR, and AP contributed to the study design, data interpretation, and writing of the manuscript. NH contributed to the study design, data collection, data interpretation, and writing of the manuscript.

Corresponding authors

Correspondence to Mondher Toumi or Eric K.H. Chan.

Ethics declarations

Ethics approval and consent to participate

The study was conducted in accordance with the ethical principles that have their origin in the Declaration of Helsinki. The study protocol was reviewed and approved by relevant institutional ethics review boards (United States, Western Independent Review Board [WIRB]; Germany, Western Independent Review Board [WIRB]; Italy, Western Independent Review Board [WIRB]; China, Shanghai Ethics Committee for Clinical Research; Japan, NPO MINS Ethics Review Committee). All participants completed an informed consent form before being interviewed.

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Not applicable.

Competing interests

MT, JW, QN, DL, and YL have no disclosures. CC is the Senior Vice President at the Hepatitis B Foundation. The Hepatitis B Foundation receives unrestricted education and public health grants from Gilead Sciences, Janssen, GSK, Bristol Myers Squibb, Antios Therapeutics, VBI Vaccines, and Dynavax Technologies. HK, JM, HCP, and CM are employees of and stockholders of Clarivate; providing specialized clinical outcomes assessment and patient-centered outcomes consultancy to various pharmaceutical companies, including Janssen Global Services, LLC, which funded the conduct of this study. AFS consults with various pharmaceutical companies, including Janssen Global Services, LLC, which funded the conduct of this study. RGG has had grants/research support from Gilead; is/has been a consultant and/or advisor to Abbott, AbbVie, Access Biologicals, Alexion, Antios, Arrowhead, Bayer AG, Bristol Myers Squibb, Eiger, Eisai, Enyo, eStudySite, Forty-Seven Inc, Gilead Sciences, HepaTx, HepQuant, Intercept, Ionis Pharmaceuticals, Janssen, Laboratory for Advanced Medicine, Lilly, Merck, Salix, Shionogi, Trimaran and Viking Therapeutics; provides consulting for ADMA Biologics, AEC Partners, Arena Pharmaceuticals Inc, Arterys Inc, Cirina, Consumer Health Products Association, DRG Abacus, Intellia, IQVIA, Kannalife, Labyrinth Holdings, Organovo, Patient Connect and Spring Bank; is on scientific or clinical advisory boards for Abbott, AbbVie, Merck, Arrowhead, Bayer, Dova Pharmaceuticals, Eiger, Enyo, Hatch Biofund, HepQuant, Intercept, Janssen, and Medimmune; is an advisory consultant for Biocollections, Fujifilm/Wako, and Quest; is on the data safety monitoring board for Ionis and Eiger; has speaker contracts with AbbVie, Bayer, Bristol Myers Squibb, Dova Pharmaceuticals, Eisai, Gilead, Intercept, Salix, and Shionogi; is a minor stock shareholder in Athenex, Triact, Riboscience, and Cocrystal; and has stock options in Athenex, Eiger, and HepQuant. Over 80% of the income from pharmaceutical companies received by RGG is directed to research, education, public policy, and/or donated to charities. HY has a research grant provided by Chugai. MC has received lecture and consultant fees from Bristol Myers Squibb, Gilead, Roche Pharma, and Roche Diagnostics, and grant support from Roche Pharma and Roche Diagnostics. MB has been a member of speakers’ bureaus for Bristol Myers Squibb, Gilead, Roche, and Janssen; and has been a member of advisory boards for AbbVie, Roche, Gilead and MSD. FvB consults for, is on the speakers’ bureau for, and received grants from Gilead, Bristol Myers Squibb, and Roche, and has scientific collaboration with Roche and Janssen. QX reports payments from Roche, Bristol Myers Squibb, Novartis, and MSD. US, MB-M, AVK, YT, AL, QC, TI, OR, and EKHC are employees of Janssen Pharmaceutica and may hold stock in Johnson and Johnson. NH was an employee of Janssen Pharmaceuticals, but did not hold any stock in Johnson and Johnson, at the time of the study. AP was an employee of Janssen Pharmaceuticals at the time of the study and may hold stock in Johnson and Johnson. GH has received honoraria from Gilead for an educational event; payment from AbbVie for excellence training; and holds stock options in Johnson and Johnson. SW reports a FOCUS grant from Gilead Sciences outside of the submitted work.

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Affiliations for Hannah Pegram, Noriyuki Habuka, Maria Beumont-Mauviel, Yasushi Takahashi, Yiwei Lu, and Anna Puggina were at the time of the study.

Supplementary Information

Additional file 1:

 Supplementary Table 1. All quotes supporting concepts that emerged when participants were asked about their experience of living with CHB. Supplementary Table 2. All comments reflecting participants’ understanding and experiences of CHB-related stigma. Supplementary Table 3. All comments reflecting participants’ understanding and experience of CHB-related self-stigma. Supplementary Table 4. All participants’ comments reflecting the impact of a functional cure on self-stigma and the impact of reduction in self-stigma.

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Toumi, M., Wallace, J., Cohen, C. et al. Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States. BMC Public Health 24, 611 (2024).

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