“I have advanced AIDS,” Rae Lewis-Thornton announces. This statement comes easily to a woman who has shared the most intimate details of her disease with hundreds of thousands of people.

Rae was diagnosed with AIDS (acquired immune deficiency syndrome) in 1992, at a time when the disease was a certain death sentence. But today she’s alive and telling her story as a national speaker on understanding and preventing HIV/AIDS.


Rae didn’t plan to be a public speaker. She already had a promising career as a political organizer in Chicago, including positions in both of Jesse Jackson’s presidential campaigns as well as in senatorial and mayoral campaigns.

In 1986, in the midst of this success, 23-year-old Rae was diagnosed HIV positive after donating blood. To this day, she says she doesn’t know who infected her. She kept her condition secret until after she developed full-blown AIDS seven years later. Soon after, she started addressing high school classes and then packed auditoriums with her message.

“I began to believe that God had other plans for me,” she says. “I quit my job and just stepped out on faith, with no plan, no brochure.” Since then, she has traveled the country to speak at schools and churches, hoping her message will make a difference.


Rae is able to do this work thanks to the introduction of a class of drugs in the late ’90s called protease inhibitors. “These medications have built my immune system back up to where I don’t get infections,” says Rae, now 45. “[In] the past 2 years [I’ve seen] the best success with AIDS meds I’ve ever had.”

Until recently, Rae was injecting Enfuvirtide (Fuzeon) into her stomach twice a day, until she was able to switch to the new FDA-approved pill, Raltegravir (Isentress). “I’m on 5 different HIV meds, and take 15 pills a day,” Rae explains. “I’m pretty compliant—no, I’m damn compliant—with taking the drugs on schedule.” Rae knows she’s in uncharted waters: “My treatment is experimental; we don’t know what HIV looks like long-term for advanced AIDS patients today,” she says.

Living with AIDS
Although Rae looks healthy, she suffers daily symptoms and side effects. “On the surface, everything seems to be OK, but I’m still immuno-compromised,” she says. She experiences constant peripheral neuropathy—a burning, tingling sensation in her hands and feet—as well as fatigue, which she says, “I can never get a handle on.”

Despite her stable health, she says, “the easiest part of living with HIV was [in the 1990s] when everything was matter of fact. I knew it. There was some way to emotionally prepare for that—there is no way to prepare for this. And that takes a physical and an emotional toll.” Rae is buoyed by the work she does and plans to continue as long as she can. After believing for years that her time was running out she is finally planning for her future.

“I feel I can’t squander having a platform. But I’m preparing for other things, because I can’t be foolish about the lifestyle of a professional speaker,” Rae says. She is working on her PhD in theology, and on finalizing her book, Unprotected: A Memoir, to be published in 2009 by Hyperion. “Living with tragedy, you figure out a way to live with it or you have to let it kill you,” she says. While she is still getting used to the idea of her future, she has definitely chosen to live life to the fullest.