The Grio.com was fortunate to sit down with Fortunata Kasege, 38, who is a family ambassador with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). Founded in 1988, EGPAF has reached more than 17 million women with services to prevent transmission of HIV to their babies.
“It currently works at more than 6,800 sites and in 15 countries to implement prevention, care, and treatment services; to further advance innovative research; and to execute global advocacy activities that bring dramatic change to the lives of millions of women, children, and families worldwide,” Kasege says.
Here she shares her story about how she has lived with HIV and her own decision to undergo prevention of mother-to child transmission of HIV (PMTCT) treatment while she was pregnant — a treatment that ultimately saved her life and prevent the transmission of HIV to her daughter Florida who was born HIV-negative.
theGrio: When were you first diagnosed with HIV?
Fortunata Kasege: I was diagnosed in 1997, a couple of weeks after coming to the United States from Tanzania. I didn’t receive any prenatal care over there and so I had to report to get prenatal care over here and that’s when they told me.
Describe your mindset of hearing that diagnosis?
It was such a shock. I was thinking about completely different things. I was 21 years old, I was about to start college and starting a family. It was an unexpected and a very unfortunate thing. I had a real dramatic reaction to it. I was very scared for my life and life of the baby. It was a very scary thing and glad they had a good positive solution to save the baby [from contracting HIV] and keep me alive.
How did you find out about the PMTCT treatment?
I found out a week later from my first visit. I was freaking out and because all I knew back then in Africa that if you get it, you die. I was screaming and panicking thinking I was going to die and they calmed me down saying ‘I wasn’t going to die. We have treatments for this here and your child will be okay. And they gave me the knowledge and it was initially hard for me to believe that it would happen until my child was born because no one was sharing their stories of success.
Despite your uncertainty, why did you decide to try that treatment?
I think any mother wouldn’t think twice about doing something that would protect the life of your child. It was obviously the right one because she’s well, she’s a healthy teenager now. It works.
What did PMTCT treatment consist of?
I took [the medication] AZT every four hours, and I made sure I took it religiously. I would even wake up at night to take it. I was over five months pregnant, and they gave me a twelve percent chance of transmitting it. In Africa the information I had received at the time was that there was nothing I could do to protect the baby.
Were there any setbacks or side effects?
No. I responded very well. I was in worse shape emotionally than physically. I was really distracted emotionally. They did a really good job of making sure I didn’t have any crazy side effects.
How did you feel when you found out that your child was HIV negative?
It was the best news that I had heard after hearing all of the horrible stories associated with HIV. Even though it was three to four months between being diagnosed to her being born, to me it felt like an eternity. It made me really happy and hopeful after being completely broken from hearing the [diagnosis] initially.
Describe how you think it would have been over if you were diagnosed in Tanzania.
It was God’s plan for me not to die. The baby would have been born, but statistically speaking back then, half of the babies born with HIV who don’t receive treatment die before their second birthday and that would have been the case for my baby. I probably would have died three years later. Back then, medicine was scarce and there was lack of treatment options. So I’m very, very lucky about it and it’s why I’m such an advocate for it.
What got you involved with activism?
Nine years after being diagnosed, things had turned around from being scared and sad, I just got tired of being ashamed and hiding. I wanted to make a positive difference in my community. I realized that I could give this information to a mom in my position and that maybe I can bring awareness, and tell them you’re going to be okay, your child is going to be okay. There weren’t a lot of people like me back then talking about it.
How important is it for you to tell you story to others?
It’s important because this is a preventable situation. Since [HIV] is preventable, people need knowledge. But I remember how it felt to be scared. It’s one thing to have it and another thing that to live with the unnecessary stigma. When I share [that I’m HIV positive] I feel powerful and that I’m fighting that stigma.
How were you received?
It was very positive. I was overwhelmed by what people were saying based on feedback. I had to get a separate email address just to answer all of their responses and questions. People have found me on Facebook and friended me there. They never saw anyone that was in their position and that made them feel good.
What advice do you have for people who just received news about HIV?
That it’s going to be ok. I’ve had it for 16 years and it’s going to be okay. That people can see my family and see that we are normal. And even if you do have it then no one else has to get it.
Tell me about your daughter.
My daughter’s name is Florida, she’s 16 sophomore in high school. She is very determined, extremely organized and disciplined. She makes me very happy. She gives me a hope that she will have a bright future and I’m very proud of her.
What do you would want to share with people about HIV?
I know it can be a very nerve wracking thing but you gotta [get tested]. As long as you don’t know the other person’s status you need to protect yourself. Let’s end this disease, and we can start by saving these babies lives. Support organizations that do this work so that future generations will be in support of this. Find out your own status.
Dr. Terrance McGill is an aspiring family physician with a passion for writing and increasing health awareness in the community. He recently completed his master’s in public health at the University of North Carolina at Chapel Hill.