As part of our ongoing Member Spotlight series, we are highlighting GAPP Co-Chair, Katie Coester, Associate Director, Public Policy and Advocacy at Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

EGPAF was a founding member of GAPP over a decade ago and has witnessed first-hand the progress that the coalition has been able to achieve. As Katie will explain, with the unprecedented attacks on PEPFAR, working together is more essential than ever.

EGPAF was founded more than 35 years ago by Elizabeth Glaser, whom we think of as our original advocate. Many people in this community probably know her story; she was transfused with HIV positive blood when she hemorrhaged during the birth of her first child. She then passed the infection on to her daughter Ariel, through breast feeding and, later, her son Jake, in utero.

Elizabeth saw that, though there was emerging research, it didn’t include children. She started what was then the Pediatric AIDS Foundation in Ariel’s memory to fund research and advocate to ensure that children were not left behind.

When scientists discovered that you could prevent transmission between mother and child, new cases of pediatric aids in the United States dropped dramatically. EGPAF sought to replicate what worked in the United States in sub-Saharan Africa.

Over time, our programs in Africa grew. When PEPFAR (the President’s Emergency Plan for AIDS Relief) was rolled out, we were well positioned to greatly scale up our work and reach far more children and families.

EGPAF is unique in that, while we have an implementation arm, our history is rooted in advocacy and research. Today, we do all three – implantation, research, and advocacy. We advocate for the global HIV response and ensure that PEPFAR, the Global Fund, and the global HIV response as a whole remain strong. We also work to ensure that children are not left behind. Though we’ve seen incredible gains for children, there is still a really large equity gap in the number of children on treatment versus adults. We’ve hit a plateau in reducing the number infections in children because of mother-to-child transmission. There is still a lot of work to be done.

When PEPFAR started over 20 years ago, there wasn’t very much work being done in country. There were still a lot of mistaken ideas on what you could scale up. Understanding that treatment and prevention could be scaled up, the U.S. took a leadership role in doing so.

What’s especially unique about PEPFAR is that it is possible to measure its impact. The programs are certainly complicated, but you can say “We’re testing this many people; we’re linking this many people to treatment; we’re helping them adhere to treatment.” For example, we know that the number of infections averted in children is in the hundreds of thousands. You can really see, in the numbers, the impact of the program.

As part of my job, I’ve been able to speak with women and families that have been impacted by the PEPFAR program at a personal level. I’ve heard them tell their stories about having children born HIV negative. Women who thought they weren’t going to live now have adult children who are HIV negative. Children who were diagnosed with HIV at a young age are thriving into adulthood. Because the program has had this lasting impact, we can see that people are living and thriving because they’ve had access to these services.

There’s not a single disease program that rivals PEPFAR. It has such a large scale and clear focus that there aren’t a lot of things to which it can even be compared. And, though it’s a single disease program, its impacts stretch well beyond HIV. The investments made in PEPFAR have far reaching effects into education, economic growth, and into how countries view the United States.

Especially when it comes to pregnant women and children, we’ve reached those who are easy to reach. We know what it takes and we’ve gotten them linked to treatment. The challenge, now, is getting to those last HIV positive pregnant women that haven’t yet been identified and the children who are clearly missing. Almost half of children are not in on treatment. We have to prioritize these populations

We can talk about gains for adults and countries reaching these incredible milestones, but hidden in that is the fact that we’re not hitting any of those milestones for children. They might be a smaller percentage of new infections, but they are bearing a bigger burden than adults.

I think it is rooted in compassion. The bipartisan support really grew out of Republicans and Democrats understanding the human toll of HIV and AIDS in these countries and realizing that there was something that we could do about it. The intent was to just save lives but, as time has gone on, policymakers have seen the wide-ranging impact PEPFAR and how it extends far beyond HIV.

At a time when there is political uncertainty around the globe, it behooves us to continue to have good relationships with the countries that have benefitted from PEPFAR and to continue to cultivate those relationships through the program.

EGPAF was actually a founding member of GAPP because we know that working together is far more powerful than working alone; we will have more of an impact as a community.

The GAPP brings together a big, umbrella coalition. All these different kinds of organizations are bringing their point of view to the table. There are groups that come together that might not normally work together. I think it shows the power of this issue and that there is really broad support.

This diversity helps us understand different perspectives on the global HIV epidemic. It also helps hone our messages for different audiences.

This year, it is going to be essential for us to stay united, to be loud, and to ensure that these political attacks don’t impact policy or funding.

We have a program called Africa Reach, which is Africa-lead advocacy. It’s helped me understand in a whole new way the power of authentic voices talking to policymakers and their communities. Working on a global advocacy team has taught me a lot about the advocacy that’s needed at the multilateral level and at the country and regional level in Africa.I’ve learned so much from our international colleagues and I am able to bring that back to benefit work here in the United States.