Seven pints of blood started it all.
Elizabeth Glaser was a special education teacher, wife of actor and director Paul Michael Glaser of TV’s Starsky and Hutch, and a loving mother of two children, Ariel and Jake. In 1981, Elizabeth was in the process of giving birth to her first child, Ariel, when she hemorrhaged and was transfused with those seven pints of blood. Four years later, when Jake was two years old, the Glasers found out that the blood that Elizabeth had been given was HIV-contaminated, which caused her to contract the virus. They also learned that Elizabeth, like many HIV-positive mothers, had unknowingly passed the virus to Ariel through her breast milk, and to Jake in utero. As the epidemic was still in its early stages at this time, patients faced vitriolic stigma in the United States for their HIV-positive status, so the Glasers felt the need to protect their family by keeping this difficult and life-changing news to themselves. However, when the National Enquirer threatened to breach their privacy, the Glasers bravely went public.
And so began their ceaseless fight to bring attention to the immensely underrepresented issue of pediatric HIV/AIDS.
When Ariel was diagnosed in 1986, very little was understood about AIDS, but the pediatric aspect was even less so. As Ariel fell more and more ill and the Glasers frantically searched for treatment and care options for their daughter, they were faced with the devastating reality that drug companies and health agencies were not studying pediatric HIV/AIDS and were not even aware that HIV was prevalent among children. There was no treatment being researched, tested, or approved for infected children. In addition to all of these medical setbacks they continued to fight against, Elizabeth and her family continued to battle the stigma that surrounded her and her children’s diagnosis. As members of the public grew fearful due to their lack of understanding and awareness of HIV/AIDS, Ariel was barred from some Los Angeles preschools and children began to exclude her from activities and birthday parties.
While the stigma of their disease marred their daily lives, Elizabeth concentrated on getting treatment and getting focus put on pediatric HIV/AIDS. The only drug on the market with federal approval at the time was AZT, which gained FDA approval in 1987, but was only available to adults. There was nothing that had been tested, approved, or made available for children. That was something Elizabeth was dedicated to changing. As Ariel’s condition worsened, Elizabeth pleaded with drug makers to get her daughter access to the drug. She only managed to get AZT for her daughter a year later. By that time, it was too late. Ariel died of AIDS-related illnesses in 1988. After her passing, Elizabeth pushed through her tragedy and used it as a call to action to ensure that other children, her son Jake included, had a chance at a full and healthy life. With her close friends, Susie Zeegan and Susan DeLaurentis, Elizabeth created the Pediatric AIDS Foundation to not only raise money for pediatric HIV/AIDS research, but also to instill hope in children that suffer from HIV and AIDS and continue that simple but powerful goal of giving children access to a full, healthy, and happy life.
Elizabeth Glaser and her foundation turned tragedy into triumph as they worked to raise public awareness about pediatric HIV, garner funding for the research and development of pediatric AIDS drugs, and to research mother-to-child transmission of HIV. In 1988, Elizabeth went to Washington, D.C. to explain to President and Mrs. Reagan, representatives of the National Institutes of Health (NIH), and members of Congress that children, though they may not have a political voice, can not be forgotten. More AIDS research, treatment, and care was necessary, she said, especially for children. When little response followed, Elizabeth continued to take it upon herself to fight harder and transform these needs from hope to reality. In 1989, the Foundation was awarded its first research grant and held its first fundraiser to enable research for children living with HIV to get a better understanding of the faults in their immune systems. Elizabeth continually pushed and lobbied on behalf of children living with HIV everywhere with trips to Washington, fundraisers, and obtaining research grants. In 1990, Elizabeth and Paul Glaser knew that AZT was a promising treatment for HIV, but its impact on children had not yet been tested, so they asked Congress to provide funding to test the impact of HIV drugs on children. This request would lay the groundwork for the development and research into medication for children with HIV and AIDS. Elizabeth spoke of her and her family’s trials, tragedies, grief, and her determination to overcome for a better future in her book In the Absence of Angels, published in 1991. After telling her story to the world, Elizabeth implored the nation to stand up and actively make a change when she gave a speech at the Democratic National Convention in 1992, where she drew the attention of Americans to the issues that people with HIV face. In her talk at the DNC she said, “What’s the point of caring if we don’t do something about it?” and proceeded to encourage voters to not just care, but to take action and create change. She knew lives depended on it.
Elizabeth Glaser lost her battle against AIDS in 1994, but her legacy lives on, especially through the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), posthumously renamed in her honor.
Since her passing, EGPAF has grown to be the top global nonprofit organization dedicated to eliminating pediatric HIV/AIDS. EGPAF honors her goals in their mission statement: “The Elizabeth Glaser Pediatric AIDS Foundation seeks to end pediatric HIV/AIDS through research, advocacy, and prevention and treatment programs.” In 1999, EGPAF expanded and took the fight of protecting children international when it entered the global AIDS fight to make strides in preventing mother-to-child transmission of HIV around the world. In 2003, even more progress was made when the launch of The President’s Emergency Plan for AIDS Relief (PEPFAR) enabled the global aspect of EGPAF to expand. Also in 2003, Elizabeth’s vision for pediatric HIV drug research came to fruition when Congress passed the Pediatric Research Equity Act, which effectively increased the number of drugs that tested and used in children.
Five years later, in 2008, EGPAF renewed PEPFAR and kept the progress going by authorizing $48 billion in global health programs. EGPAF now continues to fund and lead projects both nationally and internationally, providing life-saving services of testing, treatment, and counselling, and is committed to creating an AIDS-free generation. Today, EGPAF supports over 6,000 health facilities worldwide and since it began, its international work has “provided over 25 million women with services to prevent the transmission of HIV to their babies; tested over 23 million women for HIV and started more than 1.6 million individuals, including more than 143,000 children under the age of 15, on antiretroviral treatment.” Due largely to the efforts of EGPAF, the number of children infected with HIV a day is down from roughly 1300 a day in 2000, to only 400 children a day as of 2015.
EGPAF is leading the charge to end pediatric AIDS and they will not stop until no child has AIDS.
Elizabeth Glaser’s legacy lives on as her foundation continues to be in the forefront of combatting pediatric HIV/AIDS internationally and fulfilling Elizabeth’s initial mission to bring hope to HIV-positive children everywhere.
Before Ariel’s passing at far too young an age, she made a painting of how she envisioned the world. It’s a garden, teeming with life, surrounded by sunshine and love. Today, that vision is EGPAF’s logo, serving as an embodiment of both Ariel and Elizabeth’s ideal of a better world for children everywhere.
To learn more, find out how you can get involved, or donate to Elizabeth Glaser’s legacy, visit the Elizabeth Glaser Pediatric AIDS Foundation’s website at http://www.pedaids.org.