1981. Reagan became President. Lady Diana married Prince Charles. MTV launched. Ali retired. Titanic found. The Morbidity and Mortality Weekly Report (MMWR) issued the first “official” report of what would later be called the AIDS epidemic. And Elizabeth Glaser contracted HIV from a blood transfusion during childbirth.
Seven years later, Glaser lost her daughter, Ariel, to AIDS. At that time little was known about Pediatric AIDS or mother-to-child transmission and research was very limited. Out of a mother’s grief for her daughter and fear for her son’s life, Glaser co-founded The Elizabeth Glaser Pediatric AIDS Foundation and rallied the world for change. Losing her own battle with AIDS in ‘94, Glaser’s legacy lives on in many forms including the EGPAF Ambassadors—a special group of individuals, touched by HIV or AIDS, who work hard to educate, support and inspire, striving for a generation free of HIV. Today, Glaser’s son, Jake, now a healthy HIV-positive young adult, serves as an EGPAF ambassador.
Recently I had the honor of speaking via Skype with EGPAF Ambassador Florence Ngobeni-Allen who lives in Johnanessburg, South Africa. The striking similarities between Glaser and Allen were hard to miss, two HIV-positive mothers fighting, relentlessly, for global change. And just as Glaser had lost Ariel, Allen also lost her daughter, Nomthunzi, in 1997. From counseling other HIV positive mothers to advocacy work to standing alongside President Obama at the 2011 World AIDS Day, honoring Nomthunzi’s memory has become Allen’s passion and work–a mother’s fight.
Life of Riley: Did you ever imagine this is where you’d be, what you’d be doing today? Giving interviews? Traveling the world? Supporting other mothers?
Florence Allen: No, not at all. It’s amazing and when it happens, I pinch myself, and say, ‘Oh, I’m going back to America again! What is it about these guys that they keep inviting me!’ So many women have gone through what I’ve gone through. You ask yourself, how is it that it’s you who is required and privileged to come and talk to other people.
I am passionate about mother-to-child transmission, because I’ve lost Nomthunzi, and in her honor I’ll do anything to save a child’s life and to comfort mother’s all over the world and say you know what, you can still make a difference.
I used to think when I have other kids—I have 2 beautiful boys now who are HIV negative—and I used to think that the interest would be less and I would have an excuse, because I’m a mother now I can’t do it. The truth is there is still so much to be done regardless of funding and new policies that have been written and programs that have been introduced.
Riley: What other type of work and advocacy do you want to concentrate on?
Allen: Our voices as women, especially women who have gone through some of these systems, are important, and it’s important to hold another woman’s hand and say you can still fight, and I’m here with you. Those things keep me going.
The other thing is as an Ambassador of The Elizabeth Glaser Pediatric AIDS Foundation and as a person who’s done much advocacy I see the passion in what other mothers are doing. We have a blog called A Mother’s Fight. And that blog for me is just telling the story in different ways. I’d like to encourage more and more women to get into the blog and talk about their stories and share with other mothers.
You know about Elizabeth Glaser how she lost Ariel and how she fought for her kids? I see her as a very good role model. If we can be here for the next generation for whoever needs us to fight the mother’s fight then I’ll do that anytime.
Riley: I do remember Elizabeth and her story. She and Ryan White were the two people who educated me about HIV and AIDS . . . After losing Ariel, Elizabeth’s grief became the catalyst for creating The Pediatric AIDS Foundation and her advocacy work. Your story is very similar. Do you feel this empowering connection with her?
Allen: I do. Strange enough when you walk into the office her smiling face is in one of the pictures right at the door, greeting you. In a way mine is a similar story, similar to hers. And the fact that she’s not here now but she fought this fight of a mother encourages people like me. Her organization funded a place I used to work, Chris Hani Baragwanath Hospital, and I saw how much people’s lives were transformed. Not only was sharing my story as an HIV-positive person giving hope to the women, but suddenly there also was medication they could take to have HIV-negative children. Elizabeth will always be my hero. And I know one day we will meet in heaven. She is an inspiration to all of us. And I look at her in the pictures, read about her, and mention the name every day and it’s encouragement for me to fight even harder.
Riley: Can you explain antiretroviral treatment and PMTCT and how they helped you have 2 sons who are HIV-negative?
Allen: PMTCT is Prevention of mother-to-child transmission.
If a mother is HIV-positive she can pass the virus to her baby through conception, through utero, through delivery, or through breast milk. Transmission of HIV from a mother to her child can be prevented during pregnancy, childbirth, and breastfeeding through the use of antiretroviral therapy (ART) and antiretroviral (ARV) drugs.
We are fighting for PMTCT in Africa and the PMTCT transmission rate has been cut in half. There are 1,000 children born with HIV in Africa versus here in America where you have 100 to 200 children born with HIV a year. We have made good strides to prevent mother to child transmission and we’re hoping in 2015 that there will be an elimination of Pediatric AIDS transmission.
Riley: Florence, you’ve mentioned several times about an HIV free generation. Do you really see that in the near future?
Allen: We have hope. I have hope. I never thought today I’d be as healthy as I am. In our country, in South Africa, we hosted the World Cup in 2010 and I remember we won and everyone was so excited. I wasn’t. Because I never thought I was going to be there in 2010. Funny enough, in 2010 I was expecting my youngest child, and I was healthy. And I was moving forward.
So this year regardless I’m trying to study and try other things that I’ve never tried before. If a cure comes, it will come, and hopefully I’ll still be there. If it doesn’t come, I will fight as much as I can. The most important thing for me now is using every minute of my day to make a difference at this. It is important for me to continue doing this job. And I see how I can become a grandmother one day and see my grandchildren. And if not, I’d rather have gone down having fought this fight. It’s important for me.
The Elizabeth Glaser Pediatric AIDS Foundation is a global leader in the fight against pediatric HIV and AIDS. They’re working in 15 countries around the world to provide HIV prevention, care, and treatment services for children, women, and families—with a mission to eliminate pediatric AIDS.
Visit their website at www.PEDAIDS.org to learn more about Pediatric AIDS and how you can support the organization. Be sure to check out their blog, A Mother’s Fight. You can also connect with EGPAF on Facebook and Twitter.