Famous in the 1990s as “that Black woman with AIDS,” Rae Lewis-Thornton changed the national conversation around HIV when she came out on a 1994 cover of Essence magazine. The headline accompanying her photo declared, “I’m young, I’m educated, I’m drug-free, and I’m dying of AIDS.” One of the first African-American women to be open about her status, Lewis-Thornton became a new face of AIDS, one that proved Black women could get HIV even if they didn’t use drugs or have one-night-stands, had graduated cum laude from Northeastern Illinois University, and had worked on numerous high profile political campaigns (Senator Carol Mosley Braun in 1992, Michael Dukakis presidential campaign in 1988 , and both of Jesse Jackson’s 1980s era presidential bids).
For many Black women, Lewis-Thornton’s story was — and continues to be — a shocking revelation.
After being on the cover of Essence, Lewis-Thornton says she, “became this quasi kind of celebrity with HIV.” Nightline followed her for six months off and on, filming a special report, “Rae’s Story.” In Chicago, she anchored a series of news reports for CBS on HIV that won her an Emmy in 1995.
“I was always in the media,” she recalls now. “It was an interesting dichotomy actually, because at one level here I was, an attractive woman, and people were embracing me because my story resonated, especially with Black women. People liked me when they didn’t like their family members. A woman came to me one day and said, ‘You know, it occurred to me that I know more about your life than I know about my brother’s with AIDS.’”
Yet, at the same time, there was a backlash to the way her story resonated. “If I am as normal as they are, then they’re at risk too,” she explains. “They think, Oh, my God. This woman is me. This means I can get HIV. That’s when the stereotypical types of questions begin to emerge like, ‘How many men did you have sex with?’”
Although Lewis-Thornton often says, “No question is too personal,” she avoids providing a specific number. “All it takes is one,” she says.
In all other aspects, the activist is transparent: she’s spoken openly about medication side effects like diarrhea and lipodystrophy. She’s revealed that she had liposuction to remove fatty deposits under her chin. (“I got push back from that,” she says. “But it opened a door for other people in the clinic to get this same procedure done: for free.”) She talks about sex, dating, and disclosure; she talks about battles with depression, menopause, and aging with HIV. She talks about being a survivor of childhood sexual abuse as “a poor little Black girl born to heroin addicts.”
She believes in being open and honest and isn’t afraid to throw in a few F-bombs for emphasis.
“I push back in my candor and my honesty in a way that it has [gotten] me a lot of critics,” Lewis-Thornton admits. “Not only in the issue of respectability, but it’s cost me even within the HIV community.”
Still, she says, “I fundamentally believe that you cannot save lives with half-truths and misinformation. We set people up for failure when we aren’t honest about what this means. HIV is an exhausting disease to live with. It’s incredibly exhausting. The drug companies don’t want us to talk about that. It’s like, ‘Oh, there she goes again!’ [But] you can’t help people be better if we don’t acknowledge the issues … if we skate over them, if we ignore them, if we say, ‘Oh, it’s just a pill a day.’”
Lewis-Thornton says that in many ways she’s “an unpopular AIDS activist. I don’t get pharmaceutical money. I don’t get invited to the big AIDS conferences to speak.”
She was invited to a recent Black AIDS Institute roundtable involving Chicago faith leaders and Ambassador-at-large Dr. Deborah Birx, the U.S. Global AIDS Coordinator who oversees the implementation of the President’s Emergency Plan for AIDS Relief (PEPFAR).