‘It’s Not Over Yet’: Rae Lewis-Thornton And The Ongoing Fight Against HIV 30 Years Later

This story is featured in the July/August 2025 issue of ESSENCE.

Rae Lewis-Thornton was A shot of the opening spread for Lewis-Thornton’s groundbreaking cover story. “Susan Taylor heard me speak for three minutes, and she called me two weeks later and asked me to be on the cover of the magazine. I said, ‘Why would you choose me? I’m a nobody.’ She replied, ‘I believe you have a story to tell.’” ESSENCE ARCHIVES

“Honestly, I’m good. If I don’t see another penis in my life, I’m good,” she says, recounting abuse from childhood and complicated relationships as an adult. “Now I want to garden. I prefer to garden than to have sex.” 

Surviving all these years has been, without question, a triumph. But it has also been hard. Lewis-Thornton has weathered three bouts of the AIDS-related infection Pneumocystis Jirovechi Pneumonia (PJP), which has claimed many lives. She has lipodystrophy (abnormal distribution of body fat) and ­osteopenia (bone-density loss), and she’s fighting high cholesterol because of the medication she is prescribed. She takes antidepressants—because “I believe in God, but I also believe in science”—and has medicine fatigue, from taking pills and getting injections for the last 30-plus years.  

Missing a few doses of her medication recently—“four pills in the morning and three at night”—caused Lewis-Thornton’s viral load to become detectable again at the time of our conversation. When HIV is undetectable, the virus is under control and can’t be transmitted. But when it’s detectable, the immune system is vulnerable—opening the door to opportunistic infections. This is living with HIV/AIDS long term.  

“I’ll always have HIV in my body, because there’s no cure,” she says. “There is always inflammation when there is a foreign agent and your body is trying to fight it off. So we have a higher morbidity with issues of cancer, heart disease and diabetes than people who are aging without HIV.” 

Even though a diagnosis of  HIV or AIDS is no longer the death sentence that many feared in the 1980s and 1990s, Lewis-Thornton maintains that “the best advice is, don’t get infected. You can live a long time, but your body is internally aging. HIV is not just in my blood. It infects all your organs.” 

Overall rates may have decreased, but a lot of people are still contracting HIV—especially Black women. According to the U.S. Department of Health and Human Services’ Office of Minority Health (OMH), in 2022, Black women were 10 times more likely than non-Hispanic White women to be diagnosed with HIV. Black heterosexual women fall behind only Hispanic/Latino gay men, Black gay men and White gay men in diagnosis rates, per the CDC. Even more disturbing: Young people 13 to 24 account for 20 percent of new HIV cases in the U.S.—and they’re the least likely to stay in care. The reasons behind these troubling numbers are complex. 

“There are young people I’ve spoken with who don’t even know what HIV is,” says Bithiah Lafontant, 44, Director of Corporate Communications at ViiV Healthcare, a global pharmaceutical company that develops medication to prevent and treat HIV/AIDS. “When I was growing up in the 90s, HIV really was something that people thought about. 

“It was prevalent, in the headlines—like the ESSENCE cover in 1994,” continues Lafontant, who is based in Raleigh, North Carolina. “I think HIV, even 20 years ago, was a bigger part of the discourse than it is right now.”   

This lack of education affects everyone from teens to older adults, who sometimes engage in unprotected sex in nursing homes. “I’ve been in settings where people say, “Condom? What is that? Why use it?” says Maisha ­Standifer, Ph.D., M.P.H., Director of Population Health at the Satcher Health Leadership Institute at Morehouse School of Medicine. The ­community-based researcher, 51, has been trying to inform people since she was at Spelman College in the early 90s, dispensing educational materials and condoms at Atlanta’s Freaknik parties. “When you’re in a relationship, whether it’s ­committed or casual, you need to use protection prophylaxis. And that’s including condoms.”  

In addition to such highly effective barrier methods of prevention, there are newer medicines—like pre-exposure prophylaxis, or Bino Doing the Work  

Gracie Cartier, 46, of Los Angeles, is a trans woman, an activist and a host of Plus Life Media’s What’s the Jeuge talk show. Diagnosed with HIV in 2003, she has been using her platform to end the stigma around it. A former star ­hairstylist who worked with Garcelle Beauvais, Tia and Tamera Mowry, and others, she decided to share her diagnosis publicly in 2021 and to embrace her truth. 

“I’m a person who has been through so many different painful, traumatic experiences,” she says. “But there’s purpose in everything that we go through.” 

Cartier’s hardships included sexual abuse, molestation, losing both her parents and surviving gun violence—twice. Such trauma plays a significant role in HIV diagnoses, and therefore it must be addressed in order to curb new infections. “Trauma leads to risky behavior,” Lewis-Thornton explains. “I told my mom her husband was touching my breasts, and she said, ‘You ain’t going to f–k up my sh-t.’ Being beaten, sexual abuse in a family—it really impacts who we are, what we do and how we move.” 

Cartier agrees. “It plays a huge role in the way that you see yourself, your self-worth and your value, and that can lead you on arel="tag">AIDS health and wellness HIV

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