Florence Ngobeni-Allen: Remarks from AIDS@30 (Harvard University, December 2, 2011)
My name is Florence Ngobeni-Allen, and I’ve come to you from Johannesburg, South Africa to share my story and my perspective on the elimination of pediatric HIV and AIDS.
First, I want to thank Harvard University for hosting this important symposium, and for inviting me to be a part of it.
I’d like to thank Chip for moderating this discussion, and for leading a Foundation that has been such an important part of my life for the past decade. Finding the Elizabeth Glaser Pediatric AIDS Foundation was a highlight for me. When I was introduced to the Foundation, I knew that for the first time, even though there was no access in my country to treatment for preventing mother-to-child transmission HIV, there was someone out there who cared.
And thank you Ambassador Goosby, for that kind introduction. Thank you for PEPFAR. I wouldn’t be alive and here before you today without it.
And finally, thank you to all of you here for your commitment to helping children, mothers, and families around the world. Thank you for caring.
Today, I am here representing all HIV-positive mothers—the ones who have needlessly lost a child to this horrible disease, and also the ones who have been fortunate enough to get the medicine they need to ensure their baby is born healthy and free of HIV.
I can tell you personally that losing a child to HIV is the most horrible thing a mother can go through. Almost 15 years ago, I lost my daughter, Nomthunzi, to AIDS.
I gave birth in September of 1996. My husband suddenly fell ill and died three months later. Nomthunzi had also become ill, and so I took her to Chris Hani Baragwanath Hospital in Soweto, South Africa. We were both tested for HIV, and we both tested positive.
Nomthunzi fought her illness for several more weeks, but there were no antiretroviral medicines available for children at that time in South Africa. She passed away in February 1997. She was only five months old.
She was the most beautiful girl in the whole world and I will always hold her dear in my life.
After I lost Nomthunzi, my life was never the same again. I cried for a long time. I desperately wanted to get out of the house, because being home kept reminding me of my child. That’s when I was offered a job as a counselor at Chris Hani Baragwanath Hospital.
When things are bad, you have to make a decision whether to fight or give up. I chose to fight, to stand up, and to help others who were in my same situation.
I remember the first few years working as a counselor. At that time, HIV/AIDS was not a disease that most people in Africa talked about. Many people still didn’t understand it. In many areas, they denied that it even existed. To even mention AIDS was seen a curse.
There was no access to PMTCT programs. No access to ARVs, and the voices of people living with HIV were not heard.
It was a very difficult time. After I counseled someone who lost a child to HIV, I would just run to the toilet and cry. We were seeing so many lost to these needless deaths, and it felt like it was only getting worse.
But then, thanks to the work of so many, including many of you here today, there was finally a way to stop the transmission of HIV from a mother to her child. And then antiretroviral treatment and PMTCT finally came to South Africa.
When I started as a counselor, the faces of people coming into the hospital were sad and hopeless. And then it changed when they learned that there were people out there who could help. That there were interventions so that babies could be born healthy, and care and treatment available for families as well.
Trust me when I say there is nothing a mother wouldn’t do to protect her baby. And now that a woman with HIV knew that there was hope, there was finally a real reason for her to stand up, fight the terrible stigma, come forward, and be tested.
I found that there were less and less days for me to cry about someone infecting their unborn child. Instead, I would bring smiles by bringing women their child’s HIV-negative diagnosis.
Five years ago, I experienced that incredible feeling myself. After watching so many other HIV-positive mothers give birth to healthy, negative children, I began to think to myself, “What am I waiting for?” I was married again, and for the first time considered it possible for me to have a family.
I became pregnant again for the first time since Nomthunzi passed. But this time, I had treatment and access to ARVs to stop the transmission of HIV. My son Alex was born healthy and HIV-negative. For the first five months, I couldn’t bond with him. I was so scared he would get sick. But that fear finally faded away. Today he is a healthy, beautiful, five-year-old boy. And my newest son, Kulani, is a healthy 10-month-old boy, also HIV-negative.
What an incredible gift it is to have a healthy baby, free of HIV. It’s a gift that every mom deserves.
And that’s why we have to keep going until we end pediatric AIDS once and for all.
We’re making progress, because of people like all of you. But we half to be louder – we have to show the world our successes, and how close we are to an AIDS-free generation. We have to be louder in convincing our lawmakers that fighting HIV/AIDS is a good investment.
But we also need to listen. As a counselor, I’ve listened to thousands of women tell me their stories, their fears, their hopes. Tell me why they couldn’t take their medicines, or why they couldn’t come back to the ANC for a check-up, or get their child tested. Why they couldn’t disclose their status to their partner or family.
As a consultant for HIV programming, I know how important it is to listen to the real challenges that mothers face every day, and to respond to those. There should be more involvement of HIV-positive women in policy making, and decision making when designing HIV programming. In theory this in encouraged, but in practice I feel that actual involvement is sometimes minimal.
If women are not empowered, then they are silenced. And there will be fewer people like me sharing their experiences, providing support, and helping communities mobilize to fight this epidemic.
Losing my child to HIV/AIDS has been heartbreaking. It still is. But being HIV-positive, and experiencing all that I have, has taught me to be strong.
I’ve been fighting for 15 years – half of the 30 years of the AIDS epidemic. And I’m still here. And I plan on being here for many more years to see my children grow up.
Through it all, I have seen what is possible—and the progress that we’ve made.
Now, when I go into the neighborhoods, I see children playing around. Healthy children. It makes me want to work harder and harder. And it makes me very hopeful that we can end pediatric AIDS, one mother at a time, one child at a time.
I dream of a generation free of HIV. I know it’s real, because my children are a part of it. And I know that one day, soon, we will make it happen.