In December 1994, Rae Lewis-Thornton was a college-educated, 32-year-old professional who’d worked on Rev. Jesse Jackson’s presidential campaigns.
She was newly married, well-dressed and attractive.
And she was dying of AIDS.
That stark truth was broadcast to the world on the groundbreaking cover of Essence magazine, which featured Lewis-Thornton wearing an elegant dress and a solemn expression. It was a wake-up call for Black women who were not centered in HIV/AIDS health campaigns or media coverage. And it was a launching pad for Lewis-Thornton, whose activism has no doubt saved lives.
And, defying odds, she has survived to see that legacy.
“I never thought that I would live 30 years after the article,” said Lewis-Thornton, now 62. “And I was sick enough that I should have died.”
Observed Dec. 1, World AIDS Day raises awareness about the illness and commemorates millions of lives lost. Back in 1994, human immunodeficiency virus (HIV) was the leading cause of death for people ages 25 to 44 in the United States, according to the Centers for Disease Control and Prevention.
Among that age group, the death rate was nearly four times as high for Black men compared to white men, and nine times as high for Black women compared to white women. At the time, there were very few treatment options for HIV, which causes acquired immunodeficiency syndrome (AIDS).
Today, due to advances in medication, people with the virus are living longer, and HIV infections are decreasing. However, racial disparities still exist. In 2022, among men diagnosed with HIV in the U.S, 36% were Black, 35% were Latino and 24% were white, according to the CDC. Among women diagnosed, 50% were Black, 24% were white and 20% were Latina.
On Dec. 13, Lewis-Thornton will advocate for funding to help close those gaps at the 2024 Illinois Legislative Black Caucus Foundation Infinite Hope Policy Summit and Brunch at Swissotel Chicago. Now living in Alton, she also hopes to create awareness about the challenges of aging with HIV.
And she is a passionate spokesperson for trauma-informed health care, which she promotes in her 2022 memoir, “Unprotected.”
“HIV was the catalyst that got me through the door,” she said. “I hope to do some more writing and take my seminary education and my lived experience and hit the road to talk about how we live our best life.”
Lewis-Thornton has been overcoming adversity since her childhood on Chicago’s South Side. Born to parents who struggled with addiction, she was raised by her grandfather’s third wife. And she was subjected to emotional, physical and sexual abuse.
Forced to live on her own at 17, Lewis-Thornton gradually built a better life for herself. She attended Southern Illinois University, where she conducted an absentee ballot drive during former Chicago Mayor Harold Washington’s campaign. She would go on to become a political organizer for Rev. Jackson and former U.S. Senator Carol Moseley Braun.
But in the midst of her career, her world shattered after a blood drive she organized in 1987. The Red Cross informed her she had HIV. She is not certain which of her sexual partners infected her.
At first, she attempted to resume a normal life. She kept working and only told a few friends about her diagnosis. And because treatment was limited, she only saw a doctor once every six months to check the number of her T cells, or white blood cells.
But by 1993, when her illness progressed to AIDS, she began telling more people, preparing them for her demise.
“I saw death staring me in the face,” she said.
But she also saw the birth of her activism. She began educating herself on the disease and was recruited to speak to students in Chicago Public Schools. Though she was dealing with nausea and other side effects from antiretroviral drugs, she didn’t appear to be sick. That helped her communicate to audiences that everyone was at risk for getting HIV, not solely gay men or people who used drugs.
When she won a community service award at the Expo for Today’s Black Woman in Chicago, she was recruited for the Essence cover by former editor-in-chief Susan Taylor.
“Probably that story more than any other really impacted Black women, because when you looked at this young, beautiful, healthy-looking Rae Lewis-Thornton, our readers could see themselves in her,” Taylor said in the 2023 documentary, “Time of Essence.”
“And I think Black women became very aware of how vulnerable one is when you are not having protected sex.”
At the time of the Essence article, Lewis-Thornton’s T cell count was low, her immune system was shot, and she was battling bouts of pneumonia. But she persevered, working with Dr. Mardge Cohen, who provided her with new drugs as they became available.
“We just kept holding on,” Lewis-Thornton said. “Doing everything was not an easy task. And some people quit.”
Meanwhile, she began speaking across the country and even won a Chicago Emmy Award for a first-person news feature on WBBM-Channel 2.
“She’s an amazing woman,” said Cohen, who founded the Women and Children’s HIV Program at Cook County Hospital. “She and a few others really made a difference.”
Now living and working in Boston, Cohen still serves as a principal investigator at the Cook County site of MWCCS, a collaborative research effort focusing on people living with HIV.
Cohen said Lewis-Thornton’s activism in the 1990s was crucial as Black women were often excluded from treatment efforts.
“They were very ignored,” Cohen explained. “The public service announcements didn’t address them. We got so many women feeling sick with symptoms never being addressed by their usual providers. So, I think she made an incredible contribution to Black women and all women understanding that this was something that they should care about.”
Chicago native Erika Summers was among the young Black women inspired by Lewis-Thornton. As a student at Northern Illinois University, she invited Lewis-Thornton to speak on campus in the ’90s.
“She was still very young and very relatable, and she has a lot of candor in her personality,” said Summers, 52, who now lives in Los Angeles and runs an event planning company. “When she presented to us, it was really like you were hearing from your big sister.”
Summers now calls Lewis-Thornton a good friend and “personal hero.”
“She has defied the odds in so many different ways,” Summers said. “I remember seeing her when she was at her unhealthiest. I remember seeing her when she was struggling with depression and financial concerns, because when AIDS wasn’t a sexy topic anymore, her speaking contracts slowed down. She went through a lot, but I never saw her give up. She’s like the queen of reinvention.”
Lewis-Thornton has since earned her master’s degree in divinity. A fan of antiques, she also manages estate sales.
Now divorced, she says she no longer tolerates men who only want to date her privately.
“It took a lot of therapy to get me to that place, because we are taught we are nothing without men,” she said.
As she gets older, living with AIDS still requires diligence. She takes about nine pills each day, battles irritable bowel syndrome and endures pain in her hand potentially from osteoporosis.
“Aging with this disease is no cakewalk,” she said. “That’s a discussion that we don’t have because we want people to be hopeful. And then the stigma and isolation causes depression, especially for seniors with HIV. And when depression sets in, you don’t follow your medicine regimen. There’s this vicious cycle that still happens.”
Lewis-Thornton said it took writing her memoir to mourn what AIDS had taken from her. But hearing from other Black women about how she has helped them has been impactful, she added.
“I hear other people with AIDS say, ‘It made me a better person.’ It didn’t make me a better person because I was doing activism. I was doing social justice work before I even heard of HIV. I already had a purpose. It just expanded what God had for me.”