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See Me and Not Just the Disease! An In-Depth Clinical Focus on Racial Disparities in HCV Care Globally

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Ahmed M. Elsharkawy, PhD, FRCP(UK)
Released: December 1, 2021

Barriers That Lead to Disparities

Knowledge and Perception Barriers

To manage HCV effectively across ethnic groups, HCPs must understand the barriers in ethnic communities that patients with HCV face.

The slide illustrates a study that examined perceptions of individuals with HCV within a community largely comprising individuals of Pakistani origin.2

Kelly and colleagues2 recruited 219 first-generation South Asian migrants aged 18 years and older (53% of whom were women) to view an educational film on chronic hepatitis. The film was shown in community venues such as places of worship (n = 112), community centers (n = 98), and primary care offices (n = 9). Of the 219 recruits, 184 accepted the hepatitis screening that was offered immediately after the film, and exposure to the hepatitis B virus (HBV) or HCV was found in 8.5% of those tested. Questionnaires were given before and after the film, with completion rates of 79% and 70%, respectively.

You can see in the slide there was a lack of awareness of and understanding about HCV. There also were issues regarding healthcare access, such as a lack of confidence in established healthcare systems and language barriers. Participants also demonstrated hesitancy about testing, anxiety about results, and concerns regarding stigma, which is discussed in the next slide. All these issues are barriers to effective HCV management in this population.

I think it is worth highlighting that people’s experiences and expectations of healthcare are heavily dependent on ethnic background and community. In some cultures, the attitude toward healthcare is that the doctor knows best; the doctor is responsible for going to the patient to deliver care. There is less of the patient ownership and active participation in joint management of disease that we increasingly see being adopted in healthcare in the Western world.

Various ethnic communities of patients with HCV also report significant anxiety regarding test results, and they report concerns regarding stigma, which is discussed in detail in the next slide.

Stigma Among High-Risk Minority Ethnic Groups and Healthcare Providers in the UK

I think stigma is a major issue that prevents patients from accessing healthcare when they are infected with viral hepatitis (in general) and HCV (specifically).

This United Kingdom–based study conducted focus groups with individuals (N = 95) from various ethnic communities including Chinese, Pakistani, Roma, Somali, and French- and English-speaking African. Researchers also conducted semistructured interviews with key informants (n = 17) and general practitioners (n = 6).3 The study highlighted practical barriers to primary care–based screening and care, as well as numerous misconceptions regarding transmission and the epidemiology of the infection.

The amount of stigma associated with viral hepatitis—both HBV and HCV in this slide—is substantial. To a large extent, it alters the way people behave. In this study, some key informants noted that stigma caused individuals to be reluctant about disclosing their diagnoses, mainly because of extremely negative associations with infection in the community.

Informants also explained negative attitudes and lack of knowledge regarding modes of transmission—believing infection only occurs through sexual transmission or injection drug use—can lead to stigma. This might explain why people still do not come forward for testing.

I was especially struck by the last example on this slide, which documented the experience of a man being asked to leave his group house after his housemates discovered he was on medication for hepatitis. This kind of behavior and these experiences are reinforced within these communities over time. It is up to us as HCPs and advocates to work to eradicate stigma and to explain that these diseases are not a source of shame. These diseases are manageable, and people should seek treatment because it will prevent significant disease burden within the community in the longer term.

Populations Disproportionately Affected by HCV

This slide shows some interesting data from North America looking at the rate of HCV occurrence in the homeless population.4

Hofmeister and colleagues used 2013-2016 data from the National Health and Nutrition Examination Survey (NHANES) to first estimate the rate of HCV infection in the general population. They then performed retrospective literature reviews and mathematical models to estimate both population sizes and HCV prevalence in 4 niche populations: nursing home residents, active-duty military personnel, unsheltered homeless people, and incarcerated people. There are some methodologic issues regarding NHANES data, and there obviously is underrepresentation of uninsured individuals in the United States. Nevertheless, I think it makes some very important points.

Researchers found a significantly increased rate of current HCV infection for the unsheltered, homeless population, with an estimated 14.7% of the total estimated population of 160,600 demonstrating HCV antibody presence (RNA prevalence was estimated at 10.8%).

The estimated mean HCV-antibody presence for the incarcerated population was 16.1%, and the estimated mean HCV RNA prevalence was 10.7%. For both the incarcerated and homeless groups, the prevalence by RNA is 10-fold higher than that in the general healthcare population covered by NHANES. This point is important because we know that Black population in the United States bears a disproportionate burden of overall homelessness rates, (39.4%)5 and they are disproportionately overrepresented in the prison population (34% vs 29% for White males and 24% for Hispanic males).6 This suggests that HCPs will not overcome ethnic disparities in HCV care until we acknowledge the increased incidence of HCV found in disadvantaged populations, such as the homeless and incarcerated.

Systemic Social Inequalities Experienced by Ethnic Minorities in Prison Populations

Similar findings have been shown from studies on non-US populations. This slide shows data from England and Wales.7 If we were to restrict HCV testing in the incarcerated population to only those who have a history of intravenous drug use, we would miss a significant proportion of people who have risk factors for HCV acquired because they were born abroad, not because they necessarily used intravenous drugs. This understanding of ethnic background is important for those involved in provision of prison healthcare and advocating for comprehensive HCV testing within the criminal justice system.

Lower HCV Treatment Rates in Hispanic Patients vs Non-Hispanic Whites—Possible Inherent Biases

What about the US healthcare systems? How do they present barriers to adequate treatment for people with HCV from ethnic backgrounds?

This study by Wong and colleagues8 used electronic health record data from four urban hospitals in California, Louisiana, Texas, and Virginia from January 1, 2011 - February 28, 2017 to retrospectively evaluate HCV infection rates and treatment rates. Patients who were on clinical trials were excluded, and HCV status of all participants was confirmed via HCV RNA testing. Participants were followed for 3 months or until the end of the study period.

When compared with non-Hispanic White patients, you can see that the Hispanic population was associated with an odds ratio of 0.48, meaning you were one half as likely to be treated for your HCV if you came from a Hispanic background than if you came from a non-Hispanic White background.

When compared with non-Hispanic White participants, those of Hispanic ethnicity were less likely to receive HCV treatment. From a socioeconomic perspective, those participants who were insured by Medicare/state health insurance and those who had no insurance coverage at all were less likely to receive treatment compared with those participants with private insurance.

The reasons behind these disparities may be myriad and complex, but there is a fundamental inequity in access to treatment that is clearly highlighted within the healthcare system in the United States. The plan for combatting this issue deserves much thought and discussion.

The adjusted odds ratio in this study has occurred in the context of significant increases in the number of patients with known HCV who have received treatment within the US system. In the early days of direct-acting antiviral (DAA) therapy, insurance providers provided treatment reimbursement to people with HCV only if they had more advanced fibrosis. For example, Wong notes that 34 states had liver disease–severity criteria in 2014. Among these, 31 states (91%) provided treatment only to those patients with advanced fibrosis or cirrhosis. In 2016, 22 of the 43 states with known criteria required at least F3 advanced fibrosis as a requirement for treatment.8

Current attitudes, however, reflect an awareness that treatment is cost-effective for all grades of liver fibrosis. We should not accept inferior treatment rates for any population, never mind by fibrosis stage alone. I hope we will see increasingly improved treatment rates and dissolution of fibrosis requirements as we get more effective at breaking down these barriers.

Disproportionate Burden of Acute HCV and HCV Mortality in American Indian/Alaska Native Persons

Similar to what we saw in the Hispanic population in the Wong study, we see significantly higher rates of acute HCV and HCV mortality in American Indian and Alaskan Native persons within the United States. In fact, when compared with the general US population in 2015, American Indians and Alaska Natives have the highest mortality of any race (4.91 per 100,000 vs 12.95 per 100,000, respectively).9 This is interesting in that there has been a significant overall increase in acute HCV infection rates in the United States since 2009, driven in no small part by the opioid epidemic. Those of us who work in Europe believe this same increase in acute infection rates is coming our way as well, due in part, to inadequate needle- and syringe-provision exchange.

Regardless of why, it is obvious that barriers to effective HCV management are associated with significantly higher mortality rates.

Perceptions of HCV—Mode of Transmission

Another barrier to adequate care that we face is inaccurate perceptions of HCPs, especially colleagues in primary care, as to risk factors for HCV and the erroneous belief that intravenous drug use is the only mode of transmission of HCV. In the majority of patients, certainly in the United Kingdom, the acquisition of HCV historically and currently is due to intravenous drug use; however, overall the incidence of HCV transmission due to intravenous drug use is only in the order of 45% to 50% globally.

Trickey and colleagues10 used a dynamic, deterministic model for HCV transmission that simulated country-level epidemics among intravenous drug users in the general populations of 88 countries (85% of the global population). Each country’s model used systematic reviews on HCV infection rates and prevalence of intravenous drug use, as well as country-specific data from United Nations datasets. Researchers then estimated the expected decrease in HCV transmission if transmission due to intravenous drug use was removed between 2018-2030. Globally, the model predicted that 8% of HCV infections were in intravenous drug users, and that an estimated 43% of HCV infections would be prevented between 2018-2030 (varying by region) if transmission risk from use of intravenous drugs was removed. The population attributable fraction was increased for high-income countries (credibility interval (CrI): 57%-97%) vs low- and middle-income countries (CrI: 24%-64%) at 79% and 38%, respectively.

It is important that HCPs understand that the majority of other transmission occurs through unsafe medical practices, such as unsafe dental practices and inadequately screened blood transfusions.

Risk Factor Differences of Acquisition in High Endemic Areas

HCPs who treat patients from racially and ethnically diverse backgrounds must understand that just because an individual has not used intravenous drugs does not mean that they are not at risk of acquiring HCV through unsafe medical practices.

A study by Kandeel and colleagues11 provides a good example of this. This was a case-controlled study in Egypt that examined HCV risk factors in relation to preventive efforts using 86 patients and 287 age- and gender-matched controls. Patients were defined as those individuals with symptoms of acute hepatitis, HCV antibodies (but negative for hepatitis B surface antigen, hepatitis B core (HBc) immunoglobulin M, and hepatitis A virus immunoglobulin M), and those with a 7-fold increase in the upper limit of transaminase levels. Egypt has high rates of HCV seroprevalence believed to have been driven, especially in rural areas, by treatment programs in the 1970s and 1980s for schistosomiasis, a disease caused by parasitic worms.

In the study, nonlifestyle risk factors associated with HCV infection included having received an injection with a recycled syringe, having received intravenous fluids in a hospital or as an outpatient, having undergone a minor surgical procedure, and having been admitted to a hospital with the past 6 months. Although having been incarcerated and having used intravenous drugs also were associated with HCV risk, it was unsafe medical practices that composed the majority of HCV transmission in Egypt in 2012.

Language Barriers: Availability of Translated Materials and Interpreters

Another common barrier in HCV management and prevention are language barriers between HCPs and patients.

Falla and colleagues12 created an online survey that was sent to HCV screening or treatment-associated healthcare services in 6 European countries. Translated into each country’s language, the survey explored the availability of interpreters and translated materials for patients with HBV and HCV who were of an ethnic minority background and HCPs’ agreement that language barriers contribute to low screening rates, lack of screening offered and/or performed in a primary care setting, and low rates of specialist care.

There was substantial variation among countries in terms of translated materials and, perhaps of more importance, in the availability of interpreters at the time of patient consultations.

Of the 238 responses (N = 1026), interpreters were found to be common in the United Kingdom, Netherlands, and Spain, but their use was variable or rare in the remaining countries.

Translated materials were commonly or variably available in the United Kingdom (71%), Netherlands (81%), and Germany (71%; n = 57), but rarely or never available in Spain, Italy, or Hungary.

We are relatively lucky in the United Kingdom because of our ability to have interpreters present at the consultations with our patients. This helps greatly in terms of communicating about the epidemiology and management of HCV, allowing us to explain that we can cure them of the virus, thereby preventing long-term liver damage and other healthcare sequelae to improve long-term quality of life. Of course, translators also assist with the reduction of stigma.

Supporting my opinion and experience, this study found that more than one half of survey participants in the United Kingdom agreed or strongly agreed that language barriers contributed to low screening rates, screening in primary-care settings, and referral to specialists. Agreement rates across scenarios also was high for Germany (75%).

Without easily accessible information for different communities in their native languages, we are always going to struggle to break down of these community barriers.

Summary: Systemic Social Inequities Predisposing to HCV Inequities

I think this is a fantastic summary slide that shows what the systemic social inequities reflected in HCV screening, management, and prevention disparities.13 There is the issue of discrimination, the underlying social injustice that results in overrepresentation of ethnically diverse populations in the homeless population and in the criminal justice system. In addition, there are issues with education and with the language that we use that perpetuates stigma. There are issues regarding healthcare access and utilization, including the lack of insurance in those systems that do not have universal healthcare and the inability of people in minimum-wage jobs to take time away from work for healthcare appointments. In addition, there often is a lack of extended family support network to provide childcare, which results in missed appointments or avoidance of initiation of healthcare. These are all barriers that we must consider when dealing with these populations.

If a patient misses an appointment, HCPs should not assume the patient is not interested in care; consideration of the practical barriers is important. As HCPs, we must put ourselves in our patients’ shoes, in their circumstances, and think about what can be changed within the service to enable patients to engage more.

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Produced in collaboration with
Supported by educational grants from
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Janssen Therapeutics, Division of Janssen Products, LP

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