The Elizabeth Glaser Pediatric Aids Foundation (EGPAF) strives for a future that prioritizes equal treatment, healthcare and research for children with HIV. It is playing a significant role in shaping the future of pediatric AIDS.
The Story Behind the Organization
In 1981, Elizabeth Glaser gave birth to her first child, Ariel. During labor, she contracted the AIDS virus through a necessary blood transfusion. Unknowingly, she then passed it to her daughter through breast milk and then to her son, Jake, in utero.
Due to the insufficient research-tested pediatric AIDS treatments, Ariel lost her life in 1988. Fearing for her son’s life in the wake of this tragedy, Glaser decided to put her fear and hopes into action. She soon joined her two friends, Susan DeLaurentis and Susie Zeegan, and founded the Pediatric AIDS Foundation. Their central aim has not changed since then: to fund research and provide treatment and care for children suffering from AIDS. These ideals were at the forefront of Glaser’s first visit to Capitol Hill.
At the 1992 Democratic Convention, two years before she lost her own battle with AIDS, Glaser presented a moving speech. Drawing on the loss of her daughter and her own experience with AIDS, Glaser’s speech called for change. More specifically, it called for a stronger response to pediatric AIDS. Glaser remarked that “this is not politics. This is a crisis of caring.” With this statement, she made it clear that this was not only about her life or her children. Rather, she wanted to prepare the nation to help children with HIV and shape the future of pediatric AIDS. Since then, EGPAF has become the leading nonprofit organization fighting against pediatric AIDS globally.
According to the World Health Organization (WHO), approximately 1,800,000 children under the age of 14 required treatment in Sub-Saharan Africa in 2011. Roughly 27% of those diagnosed received antiretroviral coverage.
HIV in children has two primary sources: mother-to-child transmission and infections in medical hospitals. Rates are higher in countries with few resources and little healthcare and regulation. Although it is the most common contraction method, mother-to-child transmission is preventable. If the mother has access to antiretroviral therapy, the chances of her passing the virus to her child via breastfeeding or delivery, or in utero, greatly decrease. As Glaser’s experience demonstrates, healthcare malpractice can also result in the transmission of the virus. In order to prevent this, healthcare workers must strictly regulate sanitation practices and blood transfusions.
By recognizing and addressing these means of contraction, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and other organizations like EGPAF increased treatment to cover 70% of the affected population in Africa by the end of 2019.
The steady advancements in global pediatric AIDS treatment are by no means a signal to slow down. At least for EGPAF, an organization committed to eliminating childhood HIV and AIDS completely, this is only a part of the journey. Focusing on countries in Sub-Saharan Africa, EGPAF treated 96,716 HIV-positive pregnant women to reduce the risk of mother-to-child transmission in 2019. By improving access to HIV services, it also tested over 8,000,000 individuals and facilitated treatment to approximately 86,537 children.
EGPAF’s in-house research division has also performed extensive work in the clinical and operational fields, strategizing and altering treatments. For example, The Kabeho Study was one of the first studies that assessed the implementation of lifelong antiretroviral therapy in pregnant women. Its findings suggested a decline in mother-to-child transmission when mothers receive proper treatment. Project Acclaim also showed that engaging community leaders led to the greater prioritization of newborn and child health.
From early congressional meetings and calls for change, EGPAF’s impact has grown immensely. As the organization continues to advocate for the cause and raise awareness, it simultaneously provides healthcare for children without the financial means – not only in the United States but also overseas.
– Samantha Acevedo-Hernandez