A recent report from the Centers for Disease Control and Prevention (CDC) showed yet another medical disparity Black Americans are taking on but few want to talk about. Black Americans accounted for 13% of the U.S. population in 2017 but made up 43% of new HIV diagnoses.
Advocates say the stigma surrounding HIV and other sexually transmitted diseases (STD) has lessened over time, but it remains a significant barrier for people who get that diagnosis.
“If we were where we need to be, we wouldn’t be having this interview right now,” said Hannah Kistler, director of client services at Step-Up, a nonprofit working on HIV and STD prevention with a focus on underserved populations.
Kistler has been in this kind of work for about eight years and said one of the most important factors in loosening the stigma was the Undetectable Equals Untransmittable, or U=U, movement, which began in 2016. The movement stems from recent studies that show people living with HIV who maintain an undetectable viral load — the amount of HIV in the blood — cannot sexually transmit the virus to others. Getting to undetectable status means adhering to antiretroviral therapy.
Along with understanding stigmas, any organization attempting to help African Americans with their HIV diagnosis has to reckon with a history of medical malpractice that has led to a distrust of the medical community.
Perhaps the most famous of these examples is the Tuskegee syphilis experiment, conducted by the U.S. Public Health Service between 1932 and 1972, where physicians gave placebos to African American sharecroppers in order to observe the long-term effects of syphilis, while participants were told they were actually being treated.
Bo Dawson, director of outreach and prevention at Step-Up, said the organization tries to address this by giving patients a chance to figure out what’s most important to them at the time of their diagnosis. For some, it’s a future relationship. For others, though, it could be skepticism of a profession they’re about to rely on.
“Me being a white, straight male,” Dawson said. “there’s a lot of things I have to be cognizant of when working with minority populations.”
A general stigma that may be amplified for African Americans is negative feelings toward gay and bisexual men. The CDC report found 80% of new HIV diagnoses in 2017 were from male-to-male sexual contact.
African Americans are more likely to support LGBT civil rights legislation and say people in the LGBT community face discrimination, but they are less likely to support gay marriage and agree that homosexuality is acceptable, experts say.
The national conversation when it comes to HIV and other STDs is not where it needs to be, Kistler said, but she’s hopeful society will take strides in the right direction over the next few years. There’s still “tons of work to do,” she said.
Step-Up, which started in 2003 as an organization primarily concerned with prevention, has since expanded its mission to include more wrap-around services and recently applied for a grant to help with its education initiatives. Like many other advocacy organizations, one of Step-Up’s goals is for as many people as possible to know their HIV status.
Contact staff writer Tyler Fenwick at 317-762-7853. Follow him on Twitter @Ty_Fenwick.