Coping With HIV Drugs: A Pers... Video Transcript

Participants

, Rae Lewis-Thor

Summary

At the age of 23, Rae Lewis Thornton, the former National Youth Advisor to Jesse Jackson's presidential campaigns, received news that would change her life forever: she was diagnosed with HIV. Eight years later, the infection developed into full-blown AIDS. Since then, her efforts to increase AIDS awareness have reached millions. Join us as we talk to her about her experiences, and how she's dealt with tough HIV treatment regimens.

Webcast Transcript

VAREN BLACK: Hello, I'm Varen Black. Welcome to our webcast. Living with HIV is a lifelong challenge, and Rae Lewis-Thornton knows this challenge all too well. At 23 she was diagnosed with HIV, and then, eight years later, with full-blown AIDS. Since then she's been speaking to the public about her personal experience living with this disease. Today she's here to share her story with us. Thank you, Rae, for joining us today. How did you first find out that you were HIV-positive?

RAE LEWIS-THORNTON: About 17 years ago I donated blood. In fact, I organized the blood drive. People were afraid to donate blood because they thought that if somehow they donated blood they could get HIV. Of course, that's stupid, because we know that when you donate blood, they give you brand-new needles. The HIV antibody test was brand new. They had just started to test blood, and about three months later, what I thought was a thank-you letter was a letter telling me that something was wrong with the blood that I had donated. I went to the Red Cross the next day. The entire meeting took five minutes. I was 23 years old. It was a cruel time to be told that you were HIV-infected.

VAREN BLACK: Rae, what was your next step? Did you start on treatment right away?

RAE LEWIS-THORNTON: Well, you know, there was no treatment when I was diagnosed with HIV, so no. I was actually referred to the National Institute of Health, where I started to participate in a study there where they followed me every six months. It was an epidemiological study, and it wasn't until about three years into my diagnosis that actually AZT was available, and I started to take AZT, which was the national recommendation at that time, and I laugh when I think about it, because they had us taking about 600 mg of AZT, which was a toxic overload, and we know now that 300 can do what 600 does. So it was about three years before I started taking medication.

VAREN BLACK: Describe some of the challenges that you've had over the years taking medications for HIV.

RAE LEWIS-THORNTON: When I first started AZT, I remember the doctors saying, "You'll be nauseous for four to six weeks." In fact, I was nauseous for three years. AZT also made me fatigued, so I was tired all the time. No matter how much rest I'd get, there was never enough rest. I went from AZT to ddI. ddI was interesting, because it also created a queasy feeling in my stomach, but it also created diarrhea. But ddI had an emotional hurdle to it. I had these two big pills that looked like Alka-Seltzer that you had to grind up every day, and so it was an emotional, painful reminder of how ugly AIDS/HIV was.

It really wasn't until I went from ddI to Zerit and 3TC that I started to have a period where there really were no side effects, where I felt okay and I felt healthy. They didn't make me tired. They didn't make me nauseous. They didn't make me upset. But that was only short-lived, because I went from that to ritonavir. Now, ritonavir, which is one of the protease inhibitors -- they're one of the new, powerful drugs that are out on the market today -- although they do incredible things for you, they do make you very sick. It was probably by far my worst experience with HIV medicines. And I suffered through ritonavir for about four months -- and then finally we moved me to a medicine. We replaced that protease inhibitor with another protease inhibitor that had no side effects. That was Crixivan. The vomiting stopped. The diarrhea stopped. I thought it was going to be okay. Then two years into taking Crixivan I started to see that my body was starting to shape differently.