It’s hard to believe that in 2018, with an effective treatment for hepatitis C on the books since late 2013, African Americans—who make up just 12 percent of the population—still account for 25 percent of people living with the virus.
Yet this is the reality Gloria Searson, founder of the Coalition on Positive Health Empowerment, battles every day. Black folks are part of the roughly 3.5 million people in this country with HCV.
That number is an estimate, Searson tells the audience gathered at Riverside Church on a chilly, cloudy morning in Harlem, New York, on a recent Saturday during the Black Health Matters Summit. “We’ve only confirmed about 50 percent of that number,” she explains. “Most of us were born before they were screening for hep C, which means we didn’t get tested.”
We have a cure for this disease, but we do a lousy job of testing for the virus in this country. According to Searson, many locales skip screening people in homeless shelters and prison populations. And black folks are more than twice as likely not to be tested. Even when we are tested, we’re often not referred to hep C specialists.
Some of the blame can be placed squarely on access to care barriers. Minorities are less likely to be tested, even when they have known risk factors for HCV. We are less likely to benefit from coverage options through the Affordable Care Act and Medicaid expansion, as we disproportionately live in non-expansion states.
Bias and stigma also contribute to limited hep C testing.
We know IV drug use increases the risk of contracting HCV. “Most people have been exposed to IV drug use even if they don’t know it,” Searson says. “But we don’t want this to be associated with something that comes from drug use. When we ask you to test, we’re saying, ‘who did you sleep with in the past 6 months?’, and that’s personal; it’s something people don’t want to be judged by.
So what can we do to reduce the 19,000 new infections of hep C in this country each year?
Searson offers these suggestions:
Start with the three Es: Engage, educate and empower.
Expand Medicaid. Restrictive insurance practices limit access to HCV treatment. The ACA would help those states that didn’t expand Medicaid.
Institute needle-exchange programs. Substance use is huge in HCV. Yet, there’s no syringe exchange in central Harlem. “If you live in the Bronx, 40 out of 100 will come up positive for hep C. In Harlem, it’s in 4 in 7 black men,” she says. “The data are real: Syringe exchange reduces chances of hep C.”
Make the connection. “One in 5 HIV patients are never screened for HCV,” Season says. This is in spite of the fact that up to one-third of folks who test positive for HIV also have a hep C connection.
Reduce stigma. “Bring leading thought leaders to meet my folks in my community,” Searson says. COPE, made up of a community of people who have HIV, hep C or were working in the field, has helped doctors stop thinking of hep c patients as “them” and “those people.”
Take advantage of opportunities. There’s a shifting demographic among hep C patients. As the opioid epidemic spreads across the country, hep C is “increasingly affecting whites in non-urban areas,” Searson says. “Let’s use this as an opportunity. Instead of seeing addiction as a moral failing, Americans need to be more compassionate.”
Effective treatment is a shared responsibility, Searson says. “We know where the majority of people who have hep C are—senior centers, the doctor’s office. Maybe they’re still drinking. Maybe they’re unstable. Our job is not to judge. Our job is to ask how can we help this person.”