Congressional Testimony – Think of All of the Mothers, Children, Families, and Communities Supported by PEPFAR
Written Testimony of Catherine Connor, Vice President, Public Policy and Advocacy, the Elizabeth Glaser Pediatric AIDS Foundation on the President’s Emergency Plan for AIDS Relief
Submitted to the House Committee on Appropriations Subcommittee on National Security, Department of State, and Related Programs,
April 8, 2025
Chairman Diaz-Balart, Ranking Member Frankel, and distinguished Members of the Subcommittee, thank you for the opportunity to testify today in support of the President’s Emergency Plan for AIDS Relief (PEPFAR) and the international organizations and partners critical to its success. My name is Catherine Connor, and I am the Vice President of Public Policy and Advocacy at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). EGPAF implements a comprehensive response to the global fight to end HIV and AIDS through research, global advocacy, strengthening of local health care systems, and growing the capacity of governments and communities in the world’s most affected regions to respond to urgent needs. I am proud to work for this mission-driven organization, working closely with families, communities, countries, and donors fighting for an AIDS-free generation. I am asking you today to not only protect funding to end the global HIV and AIDS epidemic, but also to ensure that children are at the forefront of the U.S. global AIDS response.
Elizabeth Glaser started the Pediatric AIDS Foundation over 35 years ago out of a mother’s deepest love and unimaginable heartbreak. Fueled by grief after losing her daughter, Ariel, to AIDS and determined to save her son, Jake, and other HIV-positive children, Elizabeth turned her pain into purpose, rallying the world to fight for research, treatments, and hope for children living with HIV. Thanks to Elizabeth’s legacy and to countless other mothers who did not give up, children and families impacted by HIV have a fighting chance. Since our inception in 1988, there has been a 95 percent decline in new pediatric HIV infections in the United States.
In the late 1990s, our Board of Directors decided that Elizabeth’s legacy would extend far beyond the borders of the United States, determined that results for pregnant women and children in the United States could be replicated in countries experiencing the widespread devastating impacts of HIV and AIDS. As this committee is well aware, the PEPFAR program soon followed as a result of historic bipartisan cooperation. The emergence of PEPFAR allowed EGPAF to dramatically scale up successful interventions in ways we had not imagined possible, paving the way for the organization to work across more than 20 countries globally over the past 22 years. One of our organizational strengths is that almost all of our staff is local, ensuring that our programming is locally led and locally managed to build a sustainable global AIDS response.
EGPAF has been honored to partner with PEPFAR since its inception, collaborating closely with local communities and governments to ensure families receive the vital HIV services they need to survive and thrive. We have been privileged to witness the hope brought to these communities, seeing children born HIV-negative grow into healthy adults, with their mothers at their sides, thanks to the consistent availability of HIV treatment.
Our organization inherently understands the opportunities and challenges in reaching families with the critical services to prevent and treat new HIV infections in children. In 2024, EGPAF supported testing over 4.5 million people, including more than 750,000 pregnant women. Our work included treatment support for 1.2 million people. We work hand-in-hand with PEPFAR, national and local governments, and other partners to adapt programming as new tools and innovations have become available and to share knowledge across sub-Saharan Africa.
Thanks to PEPFAR and U.S. leadership targeting mother-to-child transmission of HIV, millions of new infections in children have been averted. Globally, new HIV infections among children have declined by 75 percent since 2000, and AIDS-related deaths in children have fallen by 43 percent since 2015. Truly remarkable progress—all because bipartisan leaders in Congress across multiple Democrat and Republican presidential administrations worked together with international, local, and faith-based organizations to address this global crisis.
The progress we celebrate remains incredibly uneven and fragile, and there is much work to be done—nearly half of children living with HIV still lack access to lifesaving treatment, and efforts to reach pregnant women have stagnated, despite our successes. Simply put, without treatment, children born with HIV face a devastating reality—with peak mortality occurring at 9 to 12 weeks of a newborn’s life. Only 20 percent of children who are born with HIV will live to see the age of 5 if they do not receive treatment.
In East and Southern African countries, the results are astronomical—with more than 90 percent of pregnant women receiving prevention of mother-to-child HIV transmission (PMTCT) services and two-thirds of children accessing treatment. But the data for West and Central Africa is not as encouraging. Nearly half of HIV-positive pregnant women in this region are not receiving PMTCT services, and one in five HIV-exposed infants acquires HIV. I highlight these numbers because we must remember that there are still millions of lives to be saved by this program.
The work of the PEPFAR program is popular among your constituents, and it improves U.S. positioning in the world. Recent polling shows that 82 percent of Americans believe that U.S. leadership in global health is important. Additionally, in countries where PEPFAR works, studies have showed that it has contributed to a positive image of the United States.
I come to you today with deep concern that the success of the PEPFAR program is in serious jeopardy, putting the lives of many pregnant women and children living with HIV at immediate risk. The January 24 Executive Order suspending U.S. government foreign assistance and the subsequent waiver and termination process have severely compromised HIV service delivery infrastructures and have left national governments and PEPFAR partners unsettled and unsure how to proceed. Initially, EGPAF received stop-work orders on all our PEPFAR projects—spanning more than 10 countries in Africa. After Secretary Rubio announced the waiver for life-saving foreign assistance efforts on January 29, it took one to two weeks for us to receive communication over official channels regarding which parts of our work constituted “life-saving” and could be restarted.
Thankfully, EGPAF’s major care and treatment projects received the go-ahead from our implementing agencies to restart our projects—with a limited scope, most notably omitting programming for orphans and vulnerable children affected by HIV. EGPAF then worked with project officers to agree on revised budgets and work plans so that our projects could operate the portions of our work considered permissible under the stop-work order. On February 26, we learned that three of the projects that were previously determined to be life-saving under the waiver process had received termination notices without explanation. Fortunately, one of those three project terminations was rescinded five days later.
Current and imminent service interruptions and lack of insight into which PEPFAR projects and services will remain at the end of the foreign assistance review raise serious concerns about HIV treatment coverage for pregnant women, children, and their families—as well as the long-term impacts on the health and well-being of all people being supported by the PEPFAR program.
The program’s complexities navigate the broad continuum of supplies and services needed to prevent new infections, to identify people living with HIV, and to link those individuals to treatment and retain them in care. Recent analysis determined that funding cuts and growing uncertainty around resourcing the HIV response are likely to result in moderate to severe disruptions in the essential commodities used for HIV prevention, testing, treatment, monitoring and for services to address advanced HIV disease. This includes the supplies needed to conduct early infant diagnosis and medications specifically developed for use in infants and small children. EGPAF country teams have similarly reported that stocks of pediatric antiretroviral (ARV) formulations are not secure past 2-3 months in most countries and that the threat of stock-outs is altering dispensing practices as health workers attempt to stretch pediatric ARV supplies for as much time as possible. Even where commodities are available, accessing those commodities is much more challenging because of service delivery disruptions.
EGPAF’s two major care and treatment programs that were terminated are in Eswatini and Lesotho—where HIV prevalence for adults aged 15-29 is above 25 percent and 18 percent respectively. Those programs have been supporting approximately 200,000 people on HIV treatment, including thousands of pregnant women and children. The work of these programs includes bringing medicines closer to communities, training and mentoring nurses and other health workers, funding HIV testing counselors, providing specialized counseling services for mothers living with and at risk of acquiring HIV, and providing follow-up and psychosocial support for children living with HIV. National governments are leaning in and working with partners to identify and fill gaps where possible, but the uncertainty has created deep anxiety in these communities, as they face an unknown future without the care they desperately need. These countries have been huge success stories for the PEPFAR program and are considered the vanguard of African countries leading the way on ending HIV as a public health threat. And now they have had the rug ripped out from underneath them.
Treatment interruptions do not just cause anxiety, they are also deadly, especially for children. Studies show that treatment interruptions for pregnant women will greatly increase the chance they pass HIV on to their baby. A 2024 PEPFAR study showed one in five HIV-positive children who experienced treatment interruptions died. That study took place during a time when the PEPFAR program looked very different. Across EGPAF countries—regardless of project status—we are seeing reports of concerning trends. In 30 to 50 percent of the sites we support, we have observed service interruptions for viral load monitoring, early infant diagnosis, CD4 testing, and TB diagnosis—all of which directly impact the quality of screening and testing for HIV services. Today, it is incredibly difficult to know the extent to which these interruptions stretch beyond our own programs and beyond the countries where we work.
Historically PEPFAR has adapted to incorporate innovations to drive progress in the global HIV response and work closely with countries to transition projects to further build sustainable health systems. Project disruptions are slowing momentum in these areas. Disruptions are delaying the introduction of new, improved first-line pediatric ARV formulations and the introduction of game-changing, long-acting ARVs for adults. Country leadership and ownership has continued to grow as the programs mature. A recent analysis by amfAR shows that country domestic government health spending per capita has grown nearly twice as much in PEPFAR-supported countries than countries not supported by PEPFAR. In our now-terminated programs in Lesotho and Eswatini, EGPAF was actively collaborating with local partners and governments to solidify capacity and transition programming. The abrupt termination of projects threatens to derail that progress and put the work of a range of local partners at risk of collapse.
I want to share with you this recent story from EGPAF Ambassador Tatu Msangi in Tanzania. Tatu is an oncology nurse. She also works in the HIV clinic, counseling pregnant women and mothers living with HIV. She helps them adhere to their ARV treatment, which lowers their HIV viral load—with the result of a healthy, HIV-free baby. Tatu has first-hand experience with prevention of mother-to-child HIV transmission.
In 2004, as a pregnant young woman, Tatu was diagnosed with HIV. At that time, an HIV diagnosis was considered a death sentence. In 2003, fewer than 1,000 Tanzanians living with HIV were on antiretroviral treatment. Without treatment, a person living with HIV will eventually die. But in 2003, PEPFAR launched in Tanzania, bringing hope, especially to an expectant mother like Tatu. “When PEPFAR came in Tanzania, it was like a hero because everything was changed. There was hope of life,” says Tatu. Tatu’s daughter, Faith, was born HIV-free and has thrived. “The doctor informed me that I [have] an HIV-negative baby,” recalls Tatu. “It was a great day.”
Today, Tatu is alive and well, studying for a master’s degree in public health. Faith is preparing to enter her first year of university in the school of pharmacology—at the same hospital where her mother is a nurse. But Tatu worries about her own future at this moment. She has only three months of ARVs on hand to sustain her. And she worries about the expectant mothers who come to the hospital and find the HIV clinic closed and ARVs in limited supply. Without PEPFAR, will the country revert to the previous time when women had no way to protect their babies from HIV?
“We’ll start getting HIV-positive babies, born from HIV-positive women who didn’t have access to ARV treatment,” says Tatu.
We recognize that every new administration seeks to review and realign existing projects with its priorities. However, PEPFAR works at its best when Congress and the administration work together as partners. We urge you to collaborate with this administration to ensure that these lifesaving efforts continue, allowing all children and families served by PEPFAR to keep receiving essential services.
I want to express unwavering support for our national and local partners whom we work with every day to reach the people and communities in need of HIV prevention, care, and treatment services. I also want to express support for our global partners—the Global Fund to Fight AIDS, Tuberculosis and Malaria; the World Health Organization (WHO); the Joint United Nations Programme on HIV and AIDS (UNAIDS); and the United Nations Children’s Fund (UNICEF). PEPFAR’s success—and, in turn, EGPAF’s success as an international organization working at national and local levels—is due in large part to the collaboration of countries, communities, U.S.-supported programming, and international partners. The prospect of ending AIDS in children will be jeopardized without a range of actors to provide program support, technical expertise, and institutional commitment.
Please think of Tatu and Faith and all of the other mothers, children, families, and communities supported by PEPFAR when you are making considerations of the program for Fiscal Year 2026. U.S. leadership must continue in the fight against HIV and AIDS.
