Hepatitis C and The Layering of Disease-Related Stigma
“That's exactly how I feel like they look at you. Like, ‘You on drugs, you dirty, you homeless, you don't got nowhere to take yourself, staying yourself and take yourself.’ Why should they try to help you and give you the best care possible? For what? They could save it for somebody else that's doing all the right things versus give it to the people that's doing all the wrong things.” – HIV/HCV-coinfected study participant
In the United States, hepatitis C virus (HCV) infection affects nearly 4.5 million people, is the leading cause of chronic liver disease, and was the leading cause of infectious disease-related deaths prior to the COVID-19 pandemic. Patients with HCV face significant stigma associated with their diagnosis, but the prevalence and determinants of this stigma have not been examined. In a recent study, my colleagues and I explored demographic, clinical, and behavioral factors associated with patients’ experiences of HCV-related stigma.
Patients with HCV may experience multiple disease-related stigmas associated with the co-occurring (or "syndemic") HCV, HIV, and opioid epidemics. The opioid crisis has fueled a three-fold increase in the number of new HCV infections, and 10% of persons living with HCV are also coinfected with HIV. For patients with HCV, intersecting disease-related stigma and marginalized patient identities can lead to poor health outcomes and exacerbate health disparities. The layering of disease-related stigma in syndemics can undermine service delivery for patients, including testing and linkage to specialty care, and create barriers to disease understanding and treatment.
To better understand this layering, we compared patients with HCV by HIV status (HCV-monoinfected vs. HIV/HCV-coinfected patients). We surveyed 270 patients with a history of HCV infection across 5 outpatient infectious disease clinics in Philadelphia between July 2018 and May 2019.
More than 95% of participants reported experiencing stigma associated with their HCV diagnosis, and most were careful about disclosing their diagnosis to others. Compared to patients with HCV only, those coinfected with HIV/HCV more frequently experienced lower self-worth and perceived that others were uncomfortable around them.
After adjusting for history of injection drug use, HIV infection status, and other characteristics, we found that the factors associated with HCV-related stigma differed between HCV-monoinfected and HIV/HCV-coinfected patients. Specifically, among coinfected patients, receiving previous HCV treatment without cure, female gender, Latinx ethnicity, and having some college education were associated with higher stigma scores, while having an annual income between $10,000-$40,000 was associated with significantly lower stigma scores.
Patients with a history of injection drug use also had significantly higher stigma scores than patients without a history of injection drug use. Participants with HIV/HCV coinfection and a history of injection drug use had the highest average stigma scores, overall.
Together, our findings suggest that “stigma layering” due to HIV/HCV‐coinfection may amplify patients’ experiences of HCV-related stigma. Patients at the center of the HCV, HIV, and opioid syndemic may be most susceptible to the negative health consequences of stigma. Our findings are consistent with previous studies of HIV-related stigma that found that patients’ stigma experiences varied by gender, ethnicity, and higher educational attainment.
Our research also demonstrates how macro-level understandings of disease stigma impact micro-level patient experiences. Patients’ illness experiences are shaped through their social interactions, both within and outside of the clinic. Understanding how intersectional disease-related stigmas influence patients’ experiences with HCV is essential to delivering equitable care, enhancing patient engagement with care, and improving health outcomes. It is also essential to developing appropriate public health interventions for HCV, HIV, and substance use disorder that address the social processes (such as power and knowledge production) that foster and reinforce stigma, inequalities, and social exclusion among marginalized patients.
The study, “Determinants of stigma among patients with hepatitis C virus infection,” was published in the Journal of Viral Hepatisis on June 5, 2020. Authors include M. Elle Saine, Julia E. Szymczak, Tyler M. Moore, Laura P. Bamford, Frances K. Barg, Jason Schnittker, John H. Holmes, Nandita Mitra, and Vincent Lo Re III.