Determinants of Stigma Among Patients With Hepatitis C Virus Infection

M. Elle Saine; Julia E. Szymczak; Tyler M. Moore; Laura P. Bamford; Frances K. Barg; Jason Schnittker; John H. Holmes; Nandita Mitra; Vincent Lo Re III


J Viral Hepat. 2020;27(11):1179-1189. 

In This Article

Abstract and Introduction


Stigma around hepatitis C virus (HCV) infection is an important and understudied barrier to HCV treatment and elimination. The determinants of HCV-related stigma, including the impacts of stage of HCV treatment (ie spontaneously cleared; diagnosed, untreated; previously treated, not cured; currently being treated; and treated, cured) and coinfection with human immunodeficiency virus (HIV), remain unknown. To address these gaps, we conducted a cross-sectional study among patients with a history of HCV infection (n = 270) at outpatient clinics in Philadelphia from July 2018 to May 2019. We evaluated stigma using the validated HCV Stigma Scale, adapted from the Berger HIV Stigma Scale. Associations among HCV-related stigma and hypothesized demographic, behavioural, and clinical risk factors were evaluated by multivariable linear regression. Most participants (95.5%) experienced HCV-related stigma. Mean stigma scores did not differ significantly between HCV-monoinfected and HIV/HCV-coinfected participants (P = .574). However, we observed significant interactions between HIV status and multiple determinants; therefore, we stratified analyses by HIV status. Among HIV/HCV-coinfected participants, previous HCV treatment without cure, female gender, Hispanic/Latinx ethnicity and some college education were significantly associated with higher HCV-stigma scores. An annual income of $10 000-$40 000 was associated with significantly lower stigma scores. No significant associations were observed among HCV-monoinfected participants. We found that most participants experienced stigma associated with HCV diagnosis. While stigma scores were similar between HCV-monoinfected and HIV/HCV-coinfected participants, the determinants associated with HCV stigma differed by HIV status. Understanding how experiences of stigma differ between HCV-monoinfected and HIV/HCV-coinfected patients may aid in the development of targeted interventions to address the HCV epidemic.


Hepatitis C virus (HCV) infection is the leading cause of chronic liver disease and infectious disease-related deaths in the United States (US).[1–3] HCV affects nearly 4.5 million people in the United States, of whom, fewer than half are diagnosed and/or aware of their infection status.[4] Despite the advent of highly curative, all-oral HCV treatment regimens and development of national action plans to eliminate HCV infection as a major public health threat by 2030,[5–7] the number of HCV infections has increased 3.5-fold over the last decade.[1] The increasing incidence and prevalence of HCV infection is associated with the national increase in injection opioid use,[8] both of which are syndemic with the ongoing human immunodeficiency virus (HIV) epidemic.[9]

Syndemics arise when two or more diseases aggregate, exacerbating negative health outcomes within a population. In the United States, approximately 25% of people living with HIV are coinfected with HCV; among people living with HIV who have a history of injection drug use (IDU), estimates of HCV coinfection rise to 80%.[10] HIV accelerates progression of HCV-related liver fibrosis, and HIV/HCV-coinfected individuals have an increased risk of cirrhosis compared to those with chronic HCV alone.[11,12] The use of a syndemic framework can help identify the multi-level clinical, social and structural factors associated with engagement along the HCV care continuum and determine if there are differences by HIV status.[9,13–15]

Syndemics frequently emerge in the setting of structural health inequalities, within which disease-related stigma further marginalizes some patient populations.[14] Stigma is a complex social phenomenon which occurs when an attribute deviates from 'normal' qualities anticipated by society, reducing 'a whole and usual person to a tainted, discounted one'.[16] The stigmatizing label of a disease can negatively affect a patient's quality of life by depleting self-esteem, marring individual and social identity, and encouraging isolation and withdrawal.[17–20] Disease-related stigma can also adversely impact along the care continuum by creating barriers to diagnostic testing, linkage to care and treatment.[14,20–23] Moreover, disease-related stigmas may intersect with and be compounded by stigmas around other aspects of patient identities that are inherent in the structural inequalities that promote syndemics, such as racism and poverty.[24,25] Understanding how different identities intersect upon patients' experiences of disease-related stigmas allows insights into why patients with the same disease may experience stigma differently.[26–28] Moreover, understanding the biopsychosocial interactions among HCV infection, HIV infection and other marginalizing patient factors is essential to enhancing patient engagement along the healthcare continuum and developing public health initiatives to address the syndemic nature of HCV, HIV and injection opioid use.[14,27–29]

The factors associated with HCV-related stigma remain unclear, primarily because, until only recently, no validated instruments existed to measure patient experiences of HCV-related stigma.[30] To address this issue, we evaluated demographic, clinical and behavioural factors associated with HCV-related stigma among patients with a history of HCV infection and determined whether experiences of HCV-related stigma differed between HCV-monoinfected and HIV/HCV-coinfected patients. Regardless of HIV status, we hypothesized that black/African American race, Hispanic ethnicity, history of IDU, and lower socioeconomic status were associated with greater HCV-related stigma, due to existing societal stigmas associated with these attributes (eg racism) and disparities in access to health care among these patient populations.[31–38]