Sheila Muhammad tested HIV positive in 1990, when she was just 26 years old and pregnant with her third child.
She was shocked, angry and scared. HIV wasn’t something she thought she was at risk for.
“It wasn’t something I was doing,” Muhammad said.
But her husband had tested positive while in treatment for intravenous drug use.
“It took me a long time to know that he was on the drugs,” Muhammad said. “And then I didn't know enough about it. I didn't educate myself to even know that the two went together.”
That was less than a decade after HIV had been identified as the virus that can lead to AIDS. At that point, media attention was focused mainly on gay men — like Rock Hudson and Liberace. Or on IV drug users.
Not on young, black mothers like Muhammad, who’s from South Bend, Indiana.
“When I found out, the first thing I did was say a prayer to God that, you know, if I had to die, you know, I wanted my children to be grown,” Muhammad said. “So they would not be a burden on anybody else.”
HIV outreach campaigns have traditionally focused on reaching injection drug users or white men who have sex with other men. But according to the U.S. Centers for Disease Control and Prevention, about one in four people living with HIV are women.
Black women are being hit especially hard. In Indiana, 53 percent of newly diagnosed HIV cases among women in 2020 were Black women — yet they make up less than 10 percent of the female population in Indiana.
This lines up with national data. Black women account for about 60 percent of cases among women in the U.S., even though they’re only about 13 percent of the female population.
Yet many women are unaware of their status. And an overwhelming majority of new infections for women are from heterosexual contact.
Amy Knopf researches HIV prevention as an assistant professor at the Indiana University School of Nursing.
“Black Americans are the least likely to be tested, the least likely to be linked to care once they are tested and found to be HIV positive, and also the least likely to be adequately treated and virally suppressed,” Knopf said.
Knopf says like other health disparities, racism is behind the high HIV rates in Black women. That's because people of color are more likely to be essential workers and not have flexibility to leave work for medical appointments. They’re also more likely to be uninsured or underinsured. And if a woman has children, there is a higher chance she must take care of them and other household duties.
“Again, it sort of circles back to the structural racism issues, it can be really difficult to actually engage in health care,” Knopf said.
Knopf said it is important not to blame Black women for these disparities — or assume they’re fundamentally different from white women.
“That just isn't true, nor is there a behavioral difference in terms of sexual behavior,” Knopf said.
Knopf says behaviors like condom usage and multiple sex partners are similar across race.
Kim Parker, a public health researcher based in Texas who has studied HIV for more than 20 years, says culture plays a big role in these rates, because Black men and women tend to be romantically connected.
“There are fewer men in the pool,” Parker said. “African Americans tend to have higher rates of incarceration, homicide, things of that nature. So, there are few eligible men to women for Black relationships, for Black couples.”
Parker said because of the smaller dating pool, risk of infection increases once the virus has entered the community.
“And I think culturally, Black men and women want to be protective of each other,” Parker said. “Black women are less likely to leave, you know, due to bouts of infidelity and things of that nature.”
According to the CDC, some women may not know their partner’s risk factors and may not use a condom or medicine to prevent HIV. And women facing domestic violence are more likely to be forced into risky behaviors or to have sex without a condom.
“So you have to dive deeper into understanding the complexities around sex and whether or not women have control of being able to protect themselves,” Parker said. “You know, we always say wear a condom, but nine times out of 10, it's not the woman wearing the condom.”
Tony Gillespie of the Indiana Minority Health Coalition says Indiana is considered a mid-level state in terms of HIV rates of infection.
“So our numbers aren't aren't soaring, but they're significant.”
The rates are especially high among people of color. Marion County, where Indianapolis is located, was named one of the CDC’s End the Epidemic’s priority jurisdictions.
“African Americans make up the largest group of people living with HIV, which has a disproportionate impact, because we are not the majority in the country in terms of population,” Gillespie said.
And though it’s been 40 years since HIV was identified, Gillespie said a stigma still surrounds the virus.
“We still have people who, you know, are stigmatized, who are living with HIV, we still have communities that shun or just don't talk about it,” Gillespie said.
Gillespie believes too much focus is on ending the HIV epidemic. He’d like more attention on the hundreds of new cases each year — particularly the newly infected Black women.
“We’re going to have to get a handle on HIV where we are now before we can end it,” Gillespie said.
This story is the first in a three-part series focused on HIV infections in Black women.