While men remain the largest group of people diagnosed with HIV, Black women make up the majority of new HIV cases among women.
According to the Centers for Disease Control and Prevention, which reports transgender women in a separate category, of the 7,000 women diagnosed with the virus in 2018, Black women made up more than 4,000 of the cases.
Experts say that despite the astonishing rates, there is less awareness of Black women’s burden of the virus. One in nine women are unaware they have the virus, according to the CDC. Some women may not know their male partner’s risk factors for HIV, such as injection drug use or sex with male partners. As a result, these women may not use condoms or take preventative HIV medicines. And, HIV testing rates were low.
“This is about really reframing a narrative ... that HIV is only certain people and only in certain places,” said Marc Meachem, external affairs director at ViiV Healthcare. “So many Black women who do get an HIV diagnosis are shocked to find out.”
While it all seems bleak, there are groups like SisterLove who are helping to raise awareness and provide care and prevention for Black women. Phyllis Malone, who herself was diagnosed with HIV during the height of the epidemic in 1996 and didn’t initially seek care due to the stigma surrounding the disease, is now an advocate for the organization.
SisterLove, an Atlanta-based sexual and reproductive health nonprofit for women, is among several organizations that have received grants toward HIV prevention and outreach from pharmaceutical company ViiV Healthcare, who recently launched an $8 million grant toward community outreach, education and prevention focused on Black women.
According to the CDC, numerous barriers contribute to the disparities in diagnosis and treatment, including structural racism, stigma, homophobia, discrimination, and health care access. Those assigned female at birth, Black people, and teens and young adults have the lowest percentage of HIV medical care.
Epidemiologist Maria Nicole Pyra, and assistant professor at Northwestern University, said researchers missed an opportunity to reach at-risk women because it wasn’t determined until later that PrEP therapy, which is highly effective in preventing infection, is safe for pregnant and breastfeeding women.
“Information about safety during pregnancy was gathered later on in the process,” she said, according to USA Today. “We do a disservice to women, and we saw this in COVID as well, when we don't find ways to safely include pregnant people because we don't have the information to counsel them.”
CDC analysis also notes that part of the racial disparity of the new HIV cases are due to PrEP medications not reaching enough patients. Of about 500,000 Black and 300,000 Latino patients who could have benefited from PrEP in 2015, only 7,000 prescriptions were filled for Black patients and 7,600 for Latino patients.
By comparison, 40,000 prescriptions were filled for the 300,000 white patients who could have benefitted.
“That opportunity was completely missed,” said Kamila Alexander, an associate professor at Johns Hopkins University School of Nursing who studies HIV disparities, according to USA Today. “If you don't feel like it's for you, then you're not going to pay any attention to it.”