15 Years and 20 Million Women

By Florence Ngobeni-Allen | July 10, 2014

Florence (pictured with son Kulani) has been working with EGPAF for 15 years and has witnessed firsthand the impact of that work on families struggling with HIV.

Florence Ngobeni

So much has changed since I first began working with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) more than 15 years ago. I am proud to say that EGPAF recently reached its 20 millionth woman with lifesaving services to prevent transmission of HIV to their child.

This is a testament to how far we have come, and as an EGPAF Ambassador I have witnessed the impact of EGPAF’s work firsthand. Today, a future where no child has AIDS is within our reach. 

In 1999, however, the future looked very different. Treatment for HIV was not widely available in South Africa for adults or children. I was an HIV/AIDS counselor at the Chris Hani Baragwanath hospital in Soweto, which was the only clinic in the area where women living with HIV could access medical and psychological care. Working at the hospital was often heartbreaking, especially working with women who wanted to have children but couldn’t because of their HIV status.

I remember one HIV-positive woman that I counseled; she came to the clinic pregnant, unemployed, and hungry. She would stay longer than the rest of our clients and I used to share my food with her. But what was most difficult was that I knew that her unborn child was likely to be born HIV-positive because at that time we couldn’t offer prevention of mother-to-child transmission of HIV (PMTCT) services to mothers living with HIV.

She would ask me all the time if her baby was going to be born HIV-positive and if her baby was going to die. My answer would be encouraging, but in the end, because she didn’t have PMTCT services, her baby was born HIV-positive.

It was hard for me to help her to accept it when her baby passed away. I did not know what to do besides spend time with her and comfort her. Together we talked and cried. Eventually, she found some peace and accepted that her baby was gone.

I counseled many children and parents who eventually died of AIDS-related illnesses. In our support groups, women came together every Wednesday to pray, sing, and sometimes cry. What helped most of them cope with their illness was the power of camaraderie and the opportunity to share their stories with others.

But despite the prayers and support from their peers, most of the women I counseled continued to face stigma, discrimination, and eventually death. 

EGPAF was the first U.S.-based organization to support HIV/AIDS programs in my clinic. Ever since then, so much has improved. Women were able to access education on how to prevent HIV/AIDS and how to prevent mother to child transmission of HIV. Clinic staff members were trained in HIV management and more and more women in our clinic had access to the medications they needed to prevent transmission of the virus to their babies. My life and the lives of the women that I counseled changed forever.

It was so exciting to now be able to give good news to the women I counseled; as many of them gave birth to HIV-free babies. The tension and the silence in the waiting room were now broken by tears of joy instead of sadness.

Women wanted to live longer for their children, and started asking more questions about healthy eating and  other ways to  prolong their lives. I encouraged mothers to bring their partners for HIV testing, and more women brought back their children for HIV testing too. Suddenly, the clinic was full of life, hope, and the sounds of healthy children. Counselors and other medical staff members were determined to work even harder. These incredible changes wouldn’t have been possible without the support of EGPAF.

I know that women accessing HIV services all over the world are thankful for all the work that EGPAF has done. By continuing to expand access to HIV services to remote areas, and encouraging and educating men and women to get tested and stay on their medication we move ourselves that much closer to an AIDS-free generation.

But there are still many days of hard work ahead of us and we will continue our fight for the next 15 years, or however long it takes, until no child has AIDS.