Courage and Commitment: A Conversation with Willow Bay

In the final installment of our Women’s History Month series, Courage and Commitment, we sat down with Willow Bay, co-chair of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) board of directors and director of the School of Journalism at the University of Southern California’s Annenberg School for Communication and Journalism, to learn how female advocates, like herself, are making history by working to end AIDS in children. Read on to learn about her work with EGPAF and her vision for an AIDS-free future.

You have been working with EGPAF for more than 20 years, what first inspired you to join the organization?

I started out as a volunteer, working at EGPAF’s 1994 New York City Kids 4 Kids event. Back then, the HIV/AIDS landscape was very different than it is today. We were at the height of the epidemic and were watching people all around us die from the virus. No one was considering the needs of children living with HIV—except Elizabeth Glaser, Susie Zeegen, and Susan DeLaurentis. They created EGPAF and filled a void that finally gave children a voice in this terrible epidemic.

Meeting Elizabeth, Susan, and Susie and witnessing their passion and commitment first-hand is what inspired me to become more involved with EGPAF. Susie’s big heartedness was especially moving—her genuine warmth and compassion coupled with the way she interacted with everyone supporting EGPAF kept me coming back year after year. And today I am proud to serve as the co-chair of EGPAF’s board of directors.

What achievements are you most proud of since you first joined EGPAF?

While my personal role evolved and expanded from a volunteer, to recruiting professional athletes and other volunteers, and now to co-chair of the board, what EGPAF has done during that same time period is nothing short of breathtaking.

We went from utter hopelessness to becoming a true catalyst for change. Thanks to EGPAF’s efforts to support research and advocacy, we have been able to virtually eliminate pediatric HIV here in the United States.

That was a major milestone—but of course we didn’t stop there. We knew that the pandemic was still raging in other parts of the world and our job wouldn’t be done until every mother and child, no matter where they lived, could access lifesaving treatment and prevention tools.

The decision to transition to a global organization and take our work to the frontlines of the epidemic was a tremendous leap. Since we first began our global mission in 2000, we have provided more than 18 million women with services to prevent mother-to-child transmission of HIV. Approximately one in six HIV-positive pregnant women living in resource-limited settings has received these services from EGPAF and its affiliates.

The end is in sight—elimination is becoming a reality and we won’t stop until no child has AIDS.

What has been the most influential change you have seen in the global fight against pediatric HIV?

EGPAF wouldn’t have been able to transition to a global organization without support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR).  PEPFAR was a significant catalyst for change because it allowed the United States to support efforts to end the HIV epidemic worldwide. The global community coalesced around the issue and we now have several organizations and governments committed to eliminating HIV.

I think the next wave of progress will be to empower countries and their governments to create sustainable policies and programs to conquer the epidemic by strengthening their own health systems and creating infrastructures that lead to elimination. I look forward to EGPAF’s role in supporting this new model.  

As a strong advocate for females, why do you think it is important for women to unite and speak out in order reduce the stigma associated with HIV?

Particularly in resource-limited settings, HIV is a disease of women and children—which in turn makes it a disease of families. Typically, women are primary caretakers and make the majority of the family health care decisions. We must empower them to educate themselves not only about HIV prevention, but to also gain access to HIV testing, counseling, prevention, and treatment programs for themselves and their families.

Women are the core of what we do at EGPAF and they must remain a priority if we are going to see the end of AIDS in this generation.

How have your travels to Africa ignited your passion for eliminating pediatric HIV? 

Witnessing the epidemic firsthand and seeing EGPAF’s work on the ground is a life-changing experience. I got to meet the people behind the data.

Until you visit a rural clinic—often just a single room without electricity or running water—you can’t appreciate the hard work of health workers, who diligently track medical records by hand in notebooks to help keep women and their families healthy, let alone HIV-free.

Often I would see mothers and their children in waiting rooms and think, “I pray that this child will be one year older when I come back because, right now, she looks like she is in bad shape.”

But since my first visit, dramatic progress has been made to prevent pediatric HIV. Just this past June, PEPFAR announced that 1 million babies have been born HIV-free because of its programs and the work of implementing partners like EGPAF.

But the biggest change I have seen is that today, people are filled with hope. During one of my early trips to Africa, I traveled with Elizabeth’s son, Jake. When people in clinics saw that this healthy, vibrant young man was also living with HIV, it was almost like they were seeing a ghost; they couldn’t believe that a long and healthy future was possible for them.

But now, years later, there is a much more pronounced sense of optimism. Even in resource-limited settings, people living with HIV know that they can remain healthy and that sense of hope is very visible. Women look healthy and their children are thriving—EGPAF’s impact is clear. 

How do you think Elizabeth, Susie, and Susan’s legacy still inspires people to advocate for the end of HIV/AIDS?

EGPAF and the wonderful work we do to help women and children is the best example of their legacy and their courage. Our success shows that three moms sitting around a table can effectively fight a global pandemic –by enlisting people all over the world to help join them in their fight, by funding research that acts as a catalyst for successful treatments and cures, and by using their voices to make sure that this issue doesn’t go unnoticed.

And we will continue to fight for the health of people around the world until no child has AIDS.

Willow Bay is a vocal pediatric HIV/AIDS advocate and co-chair of EGPAF’s board of directors. She is also director of the School of Journalism at the University of Southern California’s Annenberg School for Communication and Journalism.