A mother’s fight to end pediatric AIDS comes to Capitol Hill

Guest blogger Jen Pollakusky of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) shares the amazing story of Florence Ngobeni-Allen, who spoke at ONE and (RED)’s World AIDS Day event this morning. This post was originally published on EGPAF’s Foundation blog.

In honor of World AIDS Day, the Elizabeth Glaser Pediatric AIDS Foundation and ONE went to Capitol Hill this week to educate policy makers about one of the great success stories in the 30-year fight against AIDS: the ability to prevent virtually all new HIV infections in children.

The briefing was sponsored by the Congressional Global Health Caucus and HIV/AIDS Caucus, as well as by Reps. Betty McCollum, Dave Reichert, Trent Franks, Barbara Lee, and Jim McDermott.

Congressional staff heard a mother’s perspective about how US investments fighting HIV/AIDS transformed her and her children’s lives, and a programmatic perspective on how to make the most of these investments by finishing the job of eliminating pediatric AIDS worldwide.

Florence Ngobeni-Allen, an HIV-positive mother from South Africa, shared her personal story of battling HIV. Florence learned she was HIV-positive when she was pregnant with her first child, Nomthunzi. At that time, HIV treatment was non-existent for children in South Africa, and barely even available for adults. Nomthunzi died when she was only five months old.

Florence was devastated by this loss.

“When things are bad, you have to make a decision of whether to fight or give up,” Florence told attendees. “I chose to fight.”

And fight she did, like only a mother can.

Even while battling her own grief, Florence began to speak out on issues such as stigma and access to HIV medicines. She became an HIV counselor to help other pregnant women living with HIV in South Africa.

Through her counseling she witnessed a dramatic change in her country, as US assistance brought wider availability of antiretroviral treatment and programs to prevent mother-to-child transmission (PMTCT) of HIV. Suddenly, an HIV diagnosis was no longer a death sentence, and there was hope for the future.

Thanks to the President’s Emergency Plan for AIDS Relief (PEPFAR) and its numerous international partners, millions of women, children, and families living with HIV in South Africa were given a second chance.

“I’m alive today because of PEPFAR,” Florence said.

In addition, she explained how American leadership prompted countries such as South Africa to take important steps to address their own epidemics, and continue the work that was jumpstarted by PEPFAR.

Today, Florence is married with two children, both of whom are HIV-negative. Florence’s dream of having a family became a reality.

Watch Florence’s Story

But this is still not the case for far too many women. Right now, only about half of all mothers in need have access to medicines to protect their babies from HIV.

Dr. RJ Simonds, Vice President of Program Innovation and Policy at the Elizabeth Glaser Pediatric AIDS Foundation, told attendees about the urgent need to expand PMTCT programs worldwide.

Simonds explained the science behind HIV infection in children – ninety percent of which occurs when babies contract the virus from their mothers during pregnancy, birth or breastfeeding. He also explained the medical techniques that can prevent almost all cases of mother-to-child transmission of HIV.

The discovery of these PMTCT techniques almost twenty years ago quickly led to the virtual elimination of pediatric AIDS in the US and the developed world. But implementing PMTCT has been much more challenging in resource-poor settings like sub-Saharan Africa, home to 90 percent of the world’s pediatric HIV infections.

PEPFAR and US leadership have made a huge difference, helping to cut these infections in half in the past decade.

Earlier this year, PEPFAR and UNAIDS unveiled a global plan to end virtually all new HIV infections in children in the next few years -– and importantly, keep mothers like Florence alive and healthy.

“To save a baby from HIV infection –- and lose a mother to AIDS -– is not the victory we need,” Simonds explained.

He stressed that the world is now at a crucial tipping point. We have the opportunity to finally eliminate pediatric AIDS, but only if we reach the other half of women who are battling to protect their children from HIV.

To do so, we need to make these mothers’ fight our fight.

Only then can we achieve what Secretary of State Hillary Clinton recently described as the greatest gift the U.S. could give to our collective future: the creation of an AIDS-free generation.

Learn how to join the fight –- visit www.amothersfight.org.

Jen Pollakusky is a Senior Public Policy and Advocacy Officer based in Washington, D.C.