A medicine that protects people from the HIV virus is used mostly by white people in Georgia, despite most new cases occurring among Black people, according to recently released data compiled at Emory University.
Similar inequities in the use of the medicine exist nationwide, according to the data, compiled by the AIDSVu project, based at Emory University’s Rollins School of Public Health.
Known as pre-exposure prophylaxis, or PrEP, the medicine, which requires a prescription, can stop the spread of the HIV virus that causes AIDS.
The AIDSVu project found about 57% of PrEP users in Georgia were white in 2020 and nearly 34% were Black. Meanwhile, almost 72% of HIV diagnoses in Georgia were among Black people in 2019, the most recent year for which data was available — compared to 15% of new cases being diagnosed among white people.
Data also shows that nationally, Black people made up 14% of PrEP users in 2021, but 42% of new HIV diagnoses in 2020, while white people made up 65% of PrEP users in 2021 and 26% of new HIV diagnoses in 2020.
A gap was also seen for Hispanic people in Georgia, though smaller: they account for 9.7% of new cases but 6.9% of PrEP users. The data was part of a report presented July 29 at the 24th International AIDS Conference.
“The South consistently has lowest PrEP intake relative to need… We’re really in the region that has had the least progress in getting PrEP to the people that need it most,” said Patrick Sullivan, a professor of epidemiology at the Rollins School of Public Health, who is the study’s author and lead scientist of AIDSVu. “I think the new insight is trying to make it clear that we’re not getting PrEP to Black and Hispanic people in proportion to their need in the epidemic.”
AIDS is a disease that weakens the immune system, gradually destroying the body’s ability to fight infections and some cancers. It is caused by human immunodeficiency virus, or HIV, and most often spread through sexual contact.
Despite prevention and treatment options, the virus can still be deadly: In 2020, the Centers for Disease Control and Prevention reported 18,489 people in the U.S. with HIV died.
Currently, there are two FDA-approved daily oral medications that can prevent an infection with the virus. The PrEP drug has been available as a pill for most of its 10-year history, and the FDA approved an injectable form of the drug late last year.
Activists and healthcare workers alike attributed inequities in the drug’s use to problems in public health messaging and access — including cost. The numbers show that the “system of PrEP implementation is not designed to yield the health outcomes that we desire to see among Black people,” said Leisha McKinley-Beach, a national HIV/AIDS consultant.
McKinley-Beach noted that in the 1980s, when the HIV virus and AIDS disease were new, messaging and media reports were “all focused on white gay men. We’ve played catch-up for the next 40-plus years, to raise awareness in Black communities.”
The same holds true for PrEP, which has been available since 2012, she said. “If I don’t see myself in the marketing and public health messaging, I don’t think it’s for me,” said McKinley-Beach, who is Black. The activist noted that almost 20% of new HIV cases in Georgia are among women, most of whom are Black.
As for access, one issue facing many Black people in Georgia and elsewhere who could benefit from PrEP is that they are uninsured or under-insured, said Michael Chancley, communications manager at PrEP4All, a national organization that works on the issue. Before assuming his current role, Chancley worked for nearly eight years in New Orleans and Atlanta at organizations offering HIV prevention services. More than half those patients were uninsured, he said.
Georgia is one of 12 states that has not expanded Medicaid, a move that would increase access to the drug, Chancley said. Also, as of late last year, most private health insurance companies are required by a federal rule to offer PrEP and related labs and clinician visits for free — but not all insurers are complying, he added. In May, Gov. Brian Kemp vetoed a measure that would have given $4.3 million in funding to provide Medicaid benefits for people living with HIV.
Sullivan says that Medicaid expansion is associated with a host of health benefits and greater equitable access to PrEP, and that drug assistance programs help to fill in gaps and cover expenses.
He also noted that there’s a stigma around taking PrEP because it is also sometimes used in combination with other medications to treat HIV.
“There’s some concern that if I have this bottle of pills and somebody recognizes that those are pills that can be used to treat HIV, that they may think that I have HIV,” Sullivan said. “We need to be just talking about PrEP as a medical intervention to protect people’s health and take it out of that zone of being stigmatized. We take all kinds of medications to improve our health and prevent future health problems.”
Dr. Earl Joyner has been treating HIV/AIDS patients for 25 years, in Georgia and Alabama jails and prisons and at Atlanta metro area clinics. He appeared in a 2012 episode of Nightline called “Endgame: Black AIDS in America.”
“My struggle then was to get patients who are HIV positive to accept medications, which meant overcoming stigma and mistrust of the medical establishment” in the Black community, he said. “Those things are still true.”
“At first, I thought, when they see me, they’ll think, ‘He says it’s good, so I’m gonna take this,’” said Dr. Joyner, who is Black. “But, it’s not enough. Even though I’m here, the medical establishment is still seen as a white-run thing.”
Dr. Joyner said he became aware of the new data showing PrEP inequities several months ago. “I felt like we needed to do something, although I’m not sure what. Why can’t we overcome this disparity?”
McKinley-Beach, Chancley and others are organizing the first “PrEP in Black America” summit, scheduled for Sept. 13 in Atlanta. Participants will discuss what it would take to create a national PrEP program that makes the drug free for all and targets Black communities, said Chancley.
In the absence of such an effort and if current inequities continue, he said, “My fear is that as HIV becomes more concentrated in Black communities ... we’re all going to forget how many people are affected by an epidemic just because they’re Black or brown, or just because they’re queer, or just because they live in the South.”
For Sullivan, Atlanta has been host to a number of medical breakthroughs in relation to HIV treatment and prevention. He hopes to see this pattern continue.
“I want Atlanta and Georgia to be the ones relying on the data and advocating for equitable responses in this epidemic… I think that this data should be a call to action to say we can do better than this.”
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