This article originally appeared on the Hill on June 12 and was co-written by Rep. Ileana Ros-Lehtinen (R-FLA.), Co-Chair of the Congressional HIV/AIDS Caucus, and Charles Lyons, President & CEO of Elizabeth Glaser Pediatric AIDS Foundation. EGPAF is on a mission to end pediatric HIV/AIDS through groundbreaking research, advocacy, and prevention and treatment programs. They are a 2018 Global Health Council member.
Each of us—one a federal policymaker, the other a veteran of children’s health advocacy—sees the past 30 years as marked by loss and struggle. AIDS has claimed millions of lives and left scores of children mourning the loss of their parents.
Yet the past three decades are also an era redeemed by progress. In the late 1980s, neither of us could have imagined that the global AIDS response would be where it is today. It seemed impossible that HIV could become a chronic condition rather than a death sentence; that prevention strategies would ever be as precise and sophisticated as they are now; or that a mother being treated for the virus could be close to certain that she’d give birth to a healthy, HIV-free baby.
Yesterday, leaders from both sides of the aisle came together on Capitol Hill to recognize a woman pivotal to that progress. Elizabeth Glaser—who unknowingly transmitted HIV to both of her children after being infected through a blood transfusion in 1981—founded the Pediatric AIDS Foundation (EGPAF) in 1988. Over the next six years, she lobbied tirelessly to ensure that her government prioritized HIV research and the development of lifesaving antiretroviral drugs (ARVs) for children. The stakes could not have been higher for her family: having lost her daughter to AIDS, she was determined to save the life of her son.
Elizabeth was, by her own admission, a thorn in the side of legislators and federal agencies. She had to be. “They hate it when I come [to Washington],” she famously quipped in 1992, “because I try to tell them how to do it better.” But ultimately, her zeal and tenacity paid off. Her message resonated with legislators—among them, a freshman from South Florida who was elected to Congress just when Elizabeth’s visits to Washington began in earnest. Though Elizabeth did not live long enough to see the full impact of her advocacy and message reflected in federal policy, her impact was profound.
Progress has followed in the wake of Elizabeth’s early successes. Since 2000, transmission of HIV from mother to child has plummeted by 70 percent worldwide. This reduction was due in large part to the U.S. President’s Emergency Plan for AIDS Relief—the development of which was a defining legislative accomplishment for one of these authors. Today, the program supports 14 million people on ARVs and has enabled more than 2.2 million babies to be born HIV-free. And at both state and federal levels, the far-reaching impact of the Ryan White Care Act is felt every day, and there is momentum behind legislation such as the REPEAL HIV Discrimination Act and its iterations, which seek to dismantle widespread stigma and bolster the civil rights of people living with HIV.
Elizabeth and so many others fought tooth and nail for those gains, blazing a trail that each of us has tried to follow and expand. Yet progress for children in the global AIDS response is tenuous. Although the number of new cases in children has dropped, those who are infected face grim odds: only 43 percent of the 2.1 million children living with HIV have access to the medication they need to survive, and up to two-thirds of those under age 2 are diagnosed late—after their weakened immune systems have been left exceptionally vulnerable to infections like tuberculosis.
Elizabeth viewed her participation in the political process as “a matter of life and death.” We must reproduce that urgency, that hunger for justice, that drove the first thirty years of this struggle. EGPAF’s thirtieth anniversary is an opportunity to applaud the strides we’ve taken, but it would be an affront to Elizabeth Glaser’s legacy if we were to view this occasion as anything less than a recommitment to the fight.