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Shortly after celebrating four years of sobriety, Brian, a 64-year-old Black man from Los Angeles, received news that came as a complete shock. His doctor told him he had tested positive for hepatitis C (HCV), a viral infection that can cause serious liver damage over time.
Hepatitis C is spread through contact with blood from an infected person, often from sharing needles or other drug injection equipment, according to the World Health Organization. People who are incarcerated also have an increased risk of acquiring hepatitis C.
That was the case for Brian, who wrestled with a decade-long addiction to heroin and cocaine and was incarcerated several times due to petty, nonviolent offenses. Though he was aware that HIV could be transmitted through injection drug use, he wasn’t aware that hepatitis C could also spread that way.
“When I was using, the goal was not to share needles in fear of HIV, not hepatitis C,” Brian recalls.
Brian isn’t alone. Experts have noticed that some people who inject drugs tend to be more knowledgeable about HIV risk than hepatitis C risk. The problem, according to Julius Wilder, MD, PhD, a hepatologist and assistant professor of medicine at Duke University School of Medicine, is that a lack of awareness about hepatitis C is a significant problem. It’s one reason the Black community is more vulnerable to the infection and experiences disproportionately high cases of chronic hepatitis C.
“Along with messaging around HIV, which is much needed, there is additional messaging needed about HCV screening and prevention,” says Dr. Wilder.
How Hepatitis C Impacts the Black American Community
Hepatitis C is more common than people might think: Between 2013 and 2016, about 2.4 million people in the United States were living with the virus — 20 to 23 percent of them Black, according to a study published in January 2020 in the journal Hepatology Communications.
Even more troubling, the U.S. Department of Health and Human Services Office of Minority Health reports that, in 2020, Black people were almost twice as likely to die of hepatitis C than white people.
Hepatitis C can be fatal because, over time, it can cause serious health conditions, such as liver cancer and chronic liver disease — a leading cause of death among Black American males ages 45 to 64.
The problem is that many people who get HCV don’t develop any symptoms in the weeks or months following the (acute) infection, according to the CDC. The same can be true for chronic hepatitis C. In fact, many people won’t experience any symptoms at all until the infection has caused advanced liver disease, which can appear years or decades later.
Luckily, Brian started experiencing symptoms of hepatitis C — nausea, fatigue, discoloration and yellowing of the eyes — in time to be properly treated. “My symptoms were my savior,” he says. Other symptoms can include itchy skin, dark urine, and loss of appetite.
When Brian first learned of his diagnosis, he thought his life was over. “I remember my doctor calling and telling me that I had hep C and that I needed to start treatment immediately,” he recalls. “[The doctor’s] voice was serious, and I thought this actually might’ve been it for me.”
The good news is that even though a hepatitis C diagnosis can be scary and should be taken seriously, the vast majority of people can be cured when it’s diagnosed and treated early. According to the Centers for Disease Control and Prevention (CDC), about 90 percent of people with the virus can be cured with 8 to 12 weeks of treatment, even if they’ve been treated for hepatitis C in the past or currently have cirrhosis.
Access to Hepatitis C Care and Racial Bias
Once Brian was diagnosed, his doctor quickly put him on a treatment plan that included a three-month course of medication. “After about a month or so, I literally felt like a new person,” he says. “It was like a miracle.”
Brian was fortunate in that regard. After getting sober, he was able to secure full-time employment and, with it, access to health insurance and quality medical care, which was instrumental in his recovery. Not everyone is so lucky.
A lack of health insurance and access to medical treatment is one of the biggest reasons hepatitis C goes undiagnosed and untreated among Black Americans, says Wilder. But even among those with insurance, the rates of hepatitis C treatment are lower than they should be, he adds.
“HCV is a great example of how structural racism can drive limited or no access to proper medical care,” he says. Structural racism concentrated IV drug use in Black communities, he adds, which led to reduced hepatitis C prevention and screening as well as reduced rates of insurance coverage that made it harder for people to get treatment.
Although Brian was cured through prompt, effective treatment, this hasn’t always been the case for Black Americans — even those who had access to primary care. Older versions of hepatitis C medication were more effective in white people than Black people, in part because Black people weren’t included in the clinical trials as often as white people were.
“This led to medical guidelines and treatment regimens for hepatitis C that relied on treatments that were significantly inferior in Black patients,” says Wilder.
Now, the new hepatitis C treatments work just as well for Black people as they do for white people, he says. But not doing so initially is an “example of how African Americans were not appropriately engaged in clinical trials,” he says.
“For decades, Black [people] were being treated with medications that had horrible side effects and did not work,” he says. “The medical field did not appropriately engage the community that was most impacted by the virus.”
Hepatitis C: Hope for the Future
Although racial bias in the healthcare system and in medical treatment is still an issue that disproportionately impacts Black Americans, it’s possible to cure hepatitis C — and Brian is one example of that.
Experts are pushing for more awareness and education, too. The CDC encourages all adults age 18 and older to be screened at least once in their lifetime. People who currently inject drugs or share needles and other equipment should be screened routinely, since they have a higher risk of infection.
Wilder also encourages people without health insurance to try to get Medicare and Medicaid, both of which can cover hepatitis C treatments.
“I cannot impress enough how important it is for African Americans to be knowledgeable about hepatitis and to advocate for their health in general,” he says.
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