My Story: Pregnant and HIV Positive

KatieCouric.com | October 9, 2012

Foundation Ambassador Fortunata Kasege shared her experience of living with HIV and giving birth to an HIV-negative, healthy baby through PMTCT for KatieCouric.com

In February 1997, I came to the United States to pursue my degree in Broadcast Journalism. I was previously a reporter at a small radio station in Tanzania and newly married to one of two guys I ever dated in my entire life — my high school sweetheart. I was five months pregnant, happy, and very excited to start a new life.

I immediately visited one of the clinics for my very first prenatal routine checkup. Two weeks later, I received a phone call that changed my life forever. When I arrived at the clinic, the nurse told me that I tested positive for HIV. I was devastated, scared, and badly traumatized by the diagnosis. I was only 22-years-old, continents away from my mom and dad, and I cried for my unborn baby.

I didn’t want to die, especially from the disease that kills millions in Africa and around the world. I was quickly informed that with the treatment available in the U.S., my baby would be born without HIV, and that I would be able to live a long productive life. At the time, it sounded too good to be true. But I followed their instructions, used all of the resources available and took the medication as instructed.

…I felt really isolated and humiliated.

In May of that year, I gave birth to a healthy baby girl. Because of the treatment I received during pregnancy to prevent prenatal HIV transmission, my daughter was HIV negative. I was relieved and happy.  Although my life and my daughter’s life were spared, I have faced a lot of difficulties throughout the years, including domestic spousal abuse and divorce. My HIV status was revealed in a negative way to my Tanzanian network, and I felt really isolated and humiliated. However my family back home remained loving and supportive with my dad being my closest supporter in so many different ways.

In 2006, I received some devastating news from home. My beloved dad suddenly passed away. The worst part was I couldn’t return home for the funeral. At that time, the old HIV travel ban was in effect which was later lifted by President Obama in 2009. Due to my immigration status, if I left the US, I wouldn’t have been able to return. I was worried that if I returned to Tanzania and was forced to stay, I wouldn’t be able to receive the treatment that could keep me alive. So instead of attending my father’s funeral, I had to listen to the whole event over the phone. It seemed that my life was falling apart again, but I suddenly gained strength and extraordinary courage from within. I decided that I wanted to make a difference in the community that saved my life.

I got involved with the Center for AIDS Treatment, Advocacy and Information in Houston, and asked them to help me to get involved in education services for the HIV community. I joined their Advocacy training program (Project LEAP), and have been educating the public about HIV/AIDS ever since. I was even selected by the Houston Center for AIDS to go to Washington, D.C. to lobby for lifesaving programs like the AIDS Drug Assistance Program (ADAP). I shared my story with members of Congress and I became a Family Ambassador to the Elizabeth Glaser Pediatric AIDS Foundation.

Today, I am responding really well to my current HIV treatment and my health remains good. My daughter is a very healthy and smart 15-year-old, who I am grateful for every day. We recently moved to New York, I am engaged to a wonderful man, and I am so optimistic about my future.

By spreading awareness regarding HIV treatment and prevention, my mission is to inspire others to keep the faith and continue the fight to eliminate HIV/AIDS and its negative stigma throughout the world.