Beyond+ Podcast: Sharing Voices Of People Affected By HIV

 There are admirable causes that start podcasts, and you feel compelled to listen to support that cause. Then you discover that, while the cause is worthy of support, the podcast lacks interest, conceptual heft, and acceptable levels of sound production.

I'm elated to report that this is not the case with Beyond+ podcast. Beyond+ shares voices and stories of individuals around the world living with or affected by HIV. These stories carve a notch in our empathy gene, and impact us well after the episode is listened to and the earbuds are stored away to be charged. The podcast is hosted by Eric Bond, who is apparently the Lead Storyteller at EGPAF (Elizabeth Glaser Pediatric AIDS Foundation).

So far, three episodes have been released, and they all are narratively superb and lovingly crafted. Bond is an excellent host, allowing the women to tell their stories without any interruption.

In the first episode, Eric Bond talks to Aunty Botee, a trans activist and social media content creator from Lesotho. Aunty Botee shares her journey from a boy child growing up in a rural village in Lesotho to a young person searching for identity to a woman living with HIV, speaking up for LGBTQ people. Her passion is about finding freedom and helping others live beyond their circumstances.

In the second episode (my favorite so far), Eric Bond talks to Josephine Nabukenya nonprofit founder from Uganda. Born with HIV, Josphine found her voice at a young age and dreamed of making an impact. She shares how she went beyond her own dreams to support the next generation of young leaders.

 In the third episode, Bond talked to Ashley Rose Murphy a young woman living with HIV in Canada. Most people who meet Ashley Rose today would be surprised to learn that only a few years ago she was one of the most prominent HIV activists in Canada. She shares about her journey to activism and why she has stepped back from public speaking to reclaim an ordinary life and build a future on her own terms.

The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is a proven leader in the global fight to end HIV and AIDS, and an advocate for every child to live a full and healthy life into adulthood.

Elizabeth Glaser approached her close friends, Susie Zeegen and Susan DeLaurentis, for help in creating a foundation that would raise money for pediatric HIV/AIDS research.

Elizabeth, Susan and Susie together with fellow founding board members Lloyd Zeiderman and Peter Benzian, began an organization that would change the course of history for families impacted by HIV around the world.

Here's the backstory. In 1981, very early in the AIDS epidemic, Elizabeth Glaser, spouse of actor Paul Michael Glaser, contracted HIV after receiving an HIV-contaminated blood transfusion while giving birth. Like other HIV-infected mothers at the time, Glaser unknowingly passed the virus to her infant daughter, Ariel, through breastfeeding. Ariel developed advanced AIDS at a time when the medical community knew very little about the disease, and there were no available treatment options. Members of the public reacted with fear, and Los Angeles preschools would not allow Glaser's then-four-year-old daughter to attend.

Early in 1987, the U.S. Food and Drug Administration finally approved AZT as an effective drug to extend the lives of AIDS patients, but the approval only extended to adults. With their daughter's condition rapidly deteriorating, the Glasers fought to have her treated with AZT intravenously. However, the treatment came too late, and the child succumbed to the disease late in summer 1988.

That year, Glaser created the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), to raise funds for pediatric HIV/AIDS research.

On December 3, 1994, Elizabeth Glaser died at the age of 47, from complications of HIV/AIDS, at her home in Santa Monica. Her son Jake, born in 1984, contracted HIV from his mother in utero, but has remained relatively healthy due to a mutation of the CCR5 gene that protects his white blood cells.

For more than 30 years, EGPAF has been a leader in meeting urgent needs in pediatric HIV and AIDS in the world’s most affected regions.

While we’ve seen significant progress in the fight to end HIV and AIDS – reducing new infections in children by more than 95% in the U.S. and by over 50% globally – there are alarming rates among adolescents and young adults, with nearly 10,000 youth becoming newly infected each week.

Each stage of life – from infancy to adulthood – brings new and different challenges, and EGPAF recognizes that ending this epidemic cannot be achieved in isolation. It requires access to prevention, treatment, and support services for all members of the family.

In 2020 and beyond, EGPAF will leverage our core expertise in service delivery, capacity building, research and advocacy to comprehensively address an evolving HIV and AIDS epidemic, and through our presence on the ground and on the global stage, we’ll advocate for the health and well-being of children as they transition into adulthood.

Check out the Beyond+ podcast. Not only will you learn more about a worthy and much-needed cause, but also you will hear the tales of people affected by this disease and their heroic struggles.