Thirty Years Later: Delivering on Elizabeth’s Legacy

Thirty years ago, Elizabeth Glaser and her two friends Susie Zeegen and Susan DeLaurentis sat down at Elizabeth’s kitchen table and formed an urgent alliance to save a child. Just weeks before, Elizabeth’s 7-year-old daughter Ariel had died after a long and painful bout with AIDS-related illnesses. Elizabeth feared that her son, Jake, also HIV-positive, would soon meet the same fate unless someone spoke out for children.

Elizabeth and her allies did succeed in saving Jake’s life along with the lives of hundreds of thousands of other children. For 30 years, EGPAF has prioritized children when it comes to HIV through research, public policy, and on-the-ground programs. Whether you’ve recently become involved in our work or have been with us since the early days, this milestone presents a moment to reflect on the strides that we have made in this lifesaving work.

Our Spirit of Collaboration

Within a month of its formation, the Foundation held the first of its many trailblazing think tanks—bringing together the best minds in immunology to work collaboratively on solving the HIV puzzle. The Foundation would go on to fund cutting-edge research, working closely with the National Institutes of Health and other leading institutions. This laid the groundwork for better HIV treatments for children and helped establish protocols to prevent mother-to-child HIV transmission—eventually leading to the virtual elimination of such transmission in the United States.

From the start, EGPAF has led bipartisan advocacy for children living with HIV and AIDS. We successfully pushed legislators to pass the Ryan White Care Act in 1990, which expanded HIV services to low-income, uninsured, and underinsured families affected by HIV in the United States. Through the tireless efforts of EGPAF’s advocacy team the Pediatric Research Equity Act finally passed in 2003, requiring that drug companies study appropriate formulations of their products for children.

A Call to Action

EGPAF’s programmatic work began in earnest in 1999 when EGPAF began implementing the Call-to-Action program in six African countries with high HIV prevalence. Today, EGPAF is working in 19 countries and supporting more than 5,000 health sites. To date, more than 1.8 million people have been enrolled in antiretroviral treatment through EGPAF projects, and more than 27 million pregnant women have received HIV services, averting transmission of the HIV virus to their children. Over the past decade, new HIV infections in children have declined by more than 60 percent in sub-Saharan nations most affected by the HIV pandemic.

EGPAF finds itself in its most hopeful position to date. But we must acknowledge that significant impediments remain in our path.

Urgent Action is Still Necessary

Just like 30 years ago, children remain woefully neglected in the fight against HIV and AIDS. The reality is that 400 children are born with HIV every day. Up to two-thirds of HIV-positive children under age two are diagnosed too late. Only 43 percent of the 2.1 million children living with HIV have access to lifesaving antiretroviral drugs (ARVs). And even as the numbers of AIDS-related deaths worldwide have declined over the past decade, that number has increased for adolescents.

Fortunately, we are taking strides in several vital areas. Eighteen months ago, EGPAF joined forces with UNAIDS, PEPFAR, and others to advance the Start Free, Stay Free, AIDS Free framework, a “super-fast-track” approach to HIV prevention; treatment; care; and support services for mothers, children, and adolescents. This collaborative effort is driving global- and national-level action to reach the ambitious goal to virtually end AIDS in children by 2020.

In 2018, EGPAF expanded and integrated projects like never before in our history to reach more families with prevention of mother-to-child HIV transmission (PMTCT) services. We have also expanded programs and research to reach and support adolescents with HIV services. EGPAF’s approaches include creating adolescent-friendly services, closing gaps in services, and integrating HIV services so that adolescents can be reached through multiple points of care.

In addition, EGPAF is leading an exciting new effort to diagnose and treat children as early as possible for HIV. EGPAF is now bringing point-of-care early infant diagnosis (POC EID) technology to nine high-impact countries. POC EID testing allows mothers to receive HIV test results for their newborns during their regularly scheduled check-ups instead of waiting weeks for results. EGPAF is also implementing an important program to identify and treat infants and children with TB—knowing that children living with HIV are 20 times more likely to contract TB and that if it is left untreated, TB is almost always fatal in those children.

Elizabeth famously stated that “actions are what save lives.” These latest undertakings are doing exactly that. We can be proud of the many actions that we take here at EGPAF every day to fulfill the vision that Elizabeth set forth 30 years ago.

When Elizabeth Glaser started her fight for her child—and for all children—HIV was considered a death sentence. But she refused to accept that consensus. Sitting around her kitchen table with two loyal friends, Elizabeth set a bold course that we continue to follow today. In this 30^th year of EGPAF, we honor the legacy of our namesake and founder who had the vision to see a world in which no child has AIDS. Our job is to deliver on this legacy. Let’s do it!