This week GERALD KITABU, now in Washington for the 2012 International AIDS Conference, interviewed a South African Florence Ngobeni-Allen, an advocate and ambassador for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) on how, as a mother, she managed to survive HIV/Aids. Excerpts:
QUESTION: It’s not a normal for many people to disclose their health status, how did you go public?
ANSWER: I disclosed my status the first day I found out I was HIV-positive. I couldn’t bear the thought of lying. It can be a risky thing to do, so I wouldn’t advise for everyone. You need to evaluate your own set-up before you disclose – there has been violence against women, women being kicked out from homes. The issue of disclosure still needs to be looked out, but not be compulsory. It was my choice, and it helped me a lot. I got support from the beginning through family and friends. It also helped when I met my husband – I told him from the beginning, so didn’t feel guilty about hiding it from him and putting him at risk of possibly being infected. The first time I disclosed to media was for international purposes, at a conference with IPPF in London. It was very empowering. I had already been talking to women as support groups, talking about my status with support groups twice a week, with more than 50 women in each group.
Q: What was the perception of the public?
A: At first people were really negative in my community, calling me names, cleaning after me in the bathroom, friends laughing at me when I go to the clinic, and making fun of me. They would open up my baby blanket asking questions, like, “Is your baby going to die?” Later on I discovered my true friends, my family stood by me the whole time, and gave me a reason to be alive. My friends and my family supported me a lot.
Q: With all the stigma and stereotypes, how did you manage to survive?
A: One of the key things is mental health with HIV. My mental health is due to the fact that I’m a counselor. It’s important to speak to people when I have a problem. It’s more than a facility – counseling can be informal, using friends, mothers, family as a sounding board. When I have issues, I discuss them, get advice, be given the courage to go on. Even when people perceive you as a strong person, you need to break down once in a while. It’s not only about your own life, but hearing about other people’s stories – you understand the human impact of HIV, which has no colors and no boundaries.
Q: What is your experience for the past fifteen years?
A: 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 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 in South Africa.
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. There was no access to HIV prevention programs. No access to medicine, 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 and it felt like it was only getting worse.
But then, thanks to the work of so many, there was finally a way to stop the transmission of HIV from a mother to her child. And then antiretroviral treatment and PMTCT came to South Africa.
There is nothing a mother wouldn’t do to protect her baby. And now that women with HIV knew that there was hope, there was finally a real reason 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, HIV-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. Today he is a healthy, beautiful, growing boy. A few after Alex was born, I gave birth to a second son, Kulani, who is 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.
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.
In addition to my role as an HIV educator, spokesperson, and programs consultant, I have come face-to-face with world leaders to advocate for AIDS relief. On World AIDS Day 2011, I participated in an event alongside rock musician Bono, singer Alicia Keys, President Barack Obama, and former Presidents George W. Bush and Bill Clinton. I consider it my life’s work to give a voice to the hundreds of thousands of people who, like me, are living with HIV.
Q: How did you protect your children from HIV?
A: When I conceived my daughter Nomthunzi, there was no treatment. Drugs were not available for PMTCT either.
Organizations like the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and PEPFAR came into South Africa, and more and more women started accessing medicines. I learned a lot about PMTCT, to the point where I decided it was time to have my own children, and they’ve all tested HIV-negative.
Q: As a mother, activist and HIV educator, you might have faced several challenges. What are they?
A: First and foremost, I think it’s important to inform myself of new developments, attend conferences like this one. When I have to contribute as an advocate or activist, it’s in an informed and instructive way of being involved. Together with being an EGPAF ambassador, I also consultant with organizations like UNAIDS, UNICEF, and the South African government and Department of Health, training on maternal and child health and HIV issues. In these roles, the challenge is the notion of doing my job but also being a person living with HIV. The challenge for me to make a difference is the need to identify the right platform and key steps to raise issues that need to be discussed.
Q: As a mother you have a lot to share with the rest of mothers in Africa and around the world, what is your advice to them?
A: My advice for fellow mothers – never take the decision of having a child without understanding your health first. It’s important to know your HIV status, but also to know and understand having a baby when you’re HIV-positive needs to be a joint decision with you, your partner, and your doctors. You need to understand the whole package of PMTCT – get tested for HIV before 13 weeks of pregnancy, know your status, keep healthy while pregnant. If you test negative, keep testing before you’re 32 weeks. If you get infected during pregnancy, you can still have interventions to protect your baby from HIV. Negotiation of condom usage during pregnancy is important. It’s key to prevent HIV but other STIs to protect the baby. Also, HIV-positive mothers should demand services from health care workers, understand you have rights, and a responsibility to make sure the child is born HIV-negative.
The community aspect is important, and the involvement of people living with HIV. Lots of things still need to be done, but engagement of the community is powerful. Let them drive issues forward, be involved in the issue as educators – they can educate their own families, and an informed community can play a major role. As people living with HIV, national policies and guidelines want to involve us, but it doesn’t always happen enough in reality. I’ve been lucky to be involved at all levels – my contributions have been heard – I feel I’m making a difference on policy and advocacy issues. EGPAF has involved me to speak to leaders, including US leaders to talk about the importance of policies, and research, and it has impact on programs that are funded. In South Africa, there was a joint meeting for People Living with HIV/AIDS in South Africa with the Department of health and women with HIV to understand how policy is made, and a safe space to talk about issues without feeling intimidated.
Governments, civil society, partners can come together and make a difference. We’re getting closer to eliminating mother-to-child transmission of HIV, vaccines, research on a cure – I believe we’re nearing the end of HIV, but there’s still a lot to do. We can’t reach the end if we don’t educate and respect people living with HIV.