Hep C and People of Color: Speaking Up and Speaking Out
Hep C and People of Color: Speaking Up and Speaking Out
What’s Lacking in Hep C Care for People of Color
I n the United States, hepatitis C affects people of color disproportionately, compared with white people.
Black Americans make up about 14 percent of the population but account for 23 percent of hepatitis C cases, a study published in the Journal of the National Medical Association found. They’re also almost twice as likely to die from complications of the virus than white people, according to the U.S. Department of Health and Human Services Office of Minority Health.
Hispanic Americans are also more likely to die from hepatitis C (but less likely to be infected with the virus) than white Americans, according to statistics from the Centers for Disease Control and Prevention (CDC). And research shows that Black, Hispanic, and Asian Americans are all less likely to be treated for hepatitis C than white Americans.
It’s a subject worth talking about, and yet, few people do. The stigma around a hepatitis C diagnosis can prevent people from speaking up about contracting the virus. And, according to research published in the Journal of Health Psychology, African Americans in particular can be more reluctant than white people to disclose their hepatitis C diagnosis.
Reducing Hepatitis C in Black Americans: A Public Health Goal
Given the impact hepatitis C has on Black Americans in particular, the CDC set a goal to lower the mortality rate among non-Hispanic Black Americans by 2025.
According to the most recent data, reaching that goal is on track, as the number of non-Hispanic Black people with hepatitis C per 100,000 has been declining steadily since 2015:
Drug Use Contributes to Stigma and Lack of Treatment for All Groups
Many people with hepatitis C, no matter their ethnic roots, aren’t willing to speak about it, partly because most infections are usually acquired through injection drug use. “There are both high levels of internalized stigma and external stigma toward people who use drugs in general, and especially drugs that are injected,” says Megan Buresh, MD, the medical director of inpatient addiction consult service at Johns Hopkins Bayview Medical Center in Baltimore.
Doctors can be reluctant to offer treatment to people who inject drugs, because they worry that IV drug use might interfere with their patients’ ability to stick to their medication. But, the problem goes beyond drug use, especially for people of color.
“African Americans are more likely to be deemed ineligible for lifesaving hepatitis C treatment than other racial groups, even when controlling for other medical factors,” says Kass Botts, who works on racial justice and health equity programs for hepatitis C, with a focus on harm reduction and drug use, for the National Viral Hepatitis Roundtable (NVHR).
For example, research published in the Annals of Hepatology found that African Americans are still more likely to be denied treatment than white Americans, even when both groups engage in risky behaviors, such as injection drug use, at the same rate.
“An underlying contributor to the [hepatitis C] treatment eligibility disparity disfavoring African Americans could be racial discrimination,” say the researchers.
Other research, published in 2020, found that although hepatitis C infections have decreased among white and Black Americans, less progress has been made in people of other races and ethnicities, especially those who were born outside the United States.
The Pros of Advocacy
Speaking up about hepatitis C can be a helpful — and healing — process. Research shows that people who are advocates tend to find their work rewarding and empowering and say it has a positive impact on their lives.
“It’s really refreshing and rewarding when someone is willing to step forward … and make sure that they have their voices heard, too,” says Michael Weaver, MD, a professor of psychiatry at McGovern Medical School at UTHealth Houston.
Under Botts, the NVHR is helping create inclusive action plans for communities around the country to improve hepatitis C care. For example, they might help pair a healthcare organization with a Black community organization that may lead educational campaigns in their network.
“It’s led by African American people within their own communities, because they have the best knowledge of culture or situational factors that might inform a more effective education campaign,” the NVHR says.
- Zou B et al. Prevalence of Viremic Hepatitis C Virus Infection by Age, Race/Ethnicity, and Birthplace and Disease Awareness Among Viremic Persons in the United States, 1999–2016. The Journal of Infectious Diseases. February 2020.
- Sims O et al. Racial Disparities in Hepatitis C Treatment Eligibility. Annals of Hepatology. July–August 2017.
- Amoako A et al. Patient and Provider Perceived Barriers and Facilitators to Direct Acting Antiviral Hepatitis C Treatment Among Priority Populations in High Income Countries: A Knowledge Synthesis. International Journal of Drug Policy. October 2021.
- Interview with Michael Weaver. McGovern Medical School. March 2023.
- Interview with Kass Botts. National Viral Hepatitis Roundtable. March 2023.
- Nasso SF et al. The Benefits and Burdens of Patient Advocacy. Journal of Clinical Oncology. September 2021.
- Suarez AE et al. Is Disclosure a Privilege? Race and Disclosure Patterns of Hepatitis C. Journal of Health Psychology. October 2019.
- Vutien P et al. Racial Disparities in Treatment Rates for Chronic Hepatitis C. Medicine. May 2016.
- Viral Hepatitis Table 3.8: Numbers and Rates of Deaths With Hepatitis C Virus Infection Listed as a Cause of Death Among Residents, by Demographic Characteristics — United States, 2016–2020. Centers for Disease Control and Prevention. August 17, 2022.
- Wilder J et al. A Systematic Review of Race and Ethnicity in Hepatitis C Clinical Trial Enrollment. Journal of the National Medical Association. March 2018.
- Facts About the U.S. Black Population. Pew Research Center. January 18, 2024.
- Hepatitis and African Americans. U.S. Department of Health and Human Services Office of Minority Health. September 2022.