It’s estimated that millions of Americans are living with hepatitis. But while the inflammatory liver condition can affect anyone, Black people are more likely to die from it — and structural inequities have a lot to do with this.
Adrienne Simmons, director of programs at the National Viral Hepatitis Roundtable (NVHR), says awareness of the virus begins with education, but many people don’t know what factors put them at risk for infection.
People become at greater risk for hepatitis C when they share drug injection needles, have sex with infected people, and receive tattoos or piercings in unlicensed facilities. This long-term type of hepatitis can lead to liver damage, cancer, and death.
Black folks were nearly twice as likely to die from hepatitis C than white people in 2018, according to the U.S. Department of Health and Human Services Office of Minority Health.
Just two years earlier, Black people were 2.6 times more likely to die from hepatitis B than white people.
“People need to understand what the risk factors are, and understand that even if you don’t know what the risk factors are, that everyone should be tested at least once in their lifetime for hepatitis C virus,” Simmons told Word In Black in a phone interview.
Though the Black community as a whole is affected by the hepatitis C virus, Simmons says it’s important for us to think about “which communities within the Black community might be disproportionately impacted.”
Hepatitis and the Black Incarcerated Population
Despite making up only 12.4% of the U.S. population, Black people account for 38.3% of prisoners, according to the Federal Bureau of Prisons. People who are incarcerated and living with hepatitis C face serious barriers to accessing treatment.
“For a number of years, jails and prisons have not provided access to hepatitis C treatment while incarcerated,” Simmons says. “And again, due to advocacy and litigation, we have seen more correctional facilities providing access to treatment now than we did 10 years ago, but we still have a long way to go.”
Unhoused Black People at Risk
Simmons says the Black unhoused community is particularly at risk for hepatitis A, which is a short-term liver infection often contracted through contaminated food or water.
According to a 2020 report of national homelessess, an estimated 40% of people experiencing homelessness were Black. About a quarter of the unsheltered homeless community — people sleeping out in the open on sidewalks or on bus or park benches — was Black, the annual assessment conducted by the U.S. Department of Housing and Urban Development also noted.
“We’ve seen a number of outbreaks of hepatitis A among people experiencing homelessness. So again, thinking about health disparities and the fact that homelessness often disproportionately impacts the Black community, the Black community tends to be at risk for hepatitis A infections,” Simmons says.
The Ongoing Fight For Access to Treatment
As a coalition of patients, providers, community-based organizations, and public health partners, the National Viral Hepatitis Roundtable (NVHR) is working to bring an end to viral hepatitis.
NVHR recently launched a collaboration with the National Alliance of State and Territorial Aids Directors and the National Association of County and City Health Officials that’s focused on people who use drugs.
“We’re approaching it with a health equity lens. And so there’s a focus on racial and ethnic communities who are disproportionately impacted by hepatitis B and hepatitis C…We’re going to be providing technical assistance and training to those network members to help address any unmet need as it relates to viral hepatitis and substance disorder care in that community. And so the Black community is very much a focus of that new collaboration,” Simmons says.
In 2014, when a curative form of therapy called direct acting antivirals came to the market, Simmons said “insurance companies immediately put barriers into place…due to the high costs of those medications.”
“While we’ve seen a number of the barriers come down, there are a lot that still remain in place…some examples of the barriers that we saw were that insurance companies would require that you have severe liver disease before they would treat your hepatitis C infection, which is something that’s a requirement that is very much unique to hepatitis C treatment. If you think about cancer, we don’t tell people, ‘oh, you’ve got to wait until you have stage four cancer before we’re treated,’” Simmons says.
“We also saw an insurance company just require that patients be abstinent from drugs and alcohol. And so this continues to be probably the most widespread barrier that we’re seeing,” she continued.
Considering the barriers people living with hepatitis face, NVHR has made it its mission to fight to increase access to hepatitis C treatment in state Medicaid programs.
“We have data that shows that a large number of people who are living with hepatitis C receive Medicaid. And so that has been our focus over the last five years,” Simmons says.