Data Don’t Lie, But the Story is Distorted

April 24, 2026

By Mitchell Warren and Suraj Madoori

For more than two decades, the President’s Emergency Plan for AIDS Relief (PEPFAR) has been widely recognized as one of the most effective global health programs in history—saving lives, strengthening health systems, and building a durable HIV response that, with consistent bipartisan support, has weathered global disruptions and crises from Ebola to COVID-19. Today, PEPFAR’s legacy is facing a different kind of test: not a biological threat, but a political one.

Buried late on a Friday afternoon, the US Administration released PEPFAR data after a long delay, and secured only after sustained pressure from civil society. What should have provided clarity and clear answers about the state of PEPFAR programming has only sparked more concern about the state of the global HIV response.

The administration argued that the data they released show continuity and efficiency: treatment numbers remain steady, and prevention among pregnant and breastfeeding women appeared to make a targeted gain. With those two short-sighted and time-limited data points, they argue that the program continues delivering results with fewer resources.

But a fuller, more detailed analysis suggests a more complicated and concerning picture—and argues that the framing by administration officials misleadingly distorts the picture.

In independent assessments, a broader trend emerges: a pre-print by amfAR’s Brian Honerman and co-authors, an analysis by Jirair Ratevosian, a new review from KFF, and AVAC’s own analysis of the data, all sound the alarm that the front end of the HIV response is weakening.

Across multiple indicators, declines are evident. HIV testing is down. Diagnoses are down. And prevention is under perhaps the greatest threat: the initiation of pre-exposure prophylaxis (PrEP) has dropped sharply overall—by nearly half, including an alarming 40% drop in PrEP initiations among adolescent girls and young women (AGYW) aged 15-24. And key population programming has been gutted and is not even tracked in the data.

These trends matter because ending HIV as a global health threat relies on interconnected systems. PEPFAR’s success has long depended on a continuous flow: people are tested for HIV, diagnosed and then linked to treatment if they are living with HIV or offered prevention if not. When testing declines, as it is under PEPFAR right now, the entire cascade is disrupted. Fewer tests mean fewer diagnoses mean fewer people entering care. Fewer people identified as at-risk means fewer people start PrEP, and fewer future HIV infections are averted.

Community-based programs, especially those reaching key populations and AGYW, have been disproportionately affected by the administration’s funding disruptions and policy shifts to date, and represent an especially crucial link in these systems. Programs reaching those most at risk are often the hardest to sustain, but they are among the most essential.

Both in the data release and as we move forward, there is growing concern about transparency. Some worry that this could be the last PEPFAR data that is released without significant pressure from advocates and Congress. The Administration has signalled a shift away from centralized PEPFAR data reporting and toward country-level systems under bilateral agreements. While country ownership is essential, this raises questions about consistency, comparability, and accountability.

Without standardized, publicly accessible and disaggregated data, it becomes far more difficult for accountability watchers—from civil society to researchers to policymakers—to assess progress, identify gaps, and advocate effectively. Variations in reporting, like the absence of key indicators such as age, sex, or population group—especially the dearth of data on men who have sex with men, transgender people and sex workers—leave critical questions unanswered and key populations increasingly invisible.

These data are a warning, not reassurance as the administration distortedly claims. HIV treatment may look stable but testing and prevention show declines. What began with the foreign aid stop-work orders in January 2025 and has continued through further funding disruptions are cracking the foundation of the HIV response.

These cracks in the foundation are becoming visible at an especially heartbreaking moment of scientific promise: long-acting prevention options like lenacapavir (LEN) are finally available and offer the potential to transform how HIV is prevented. But these innovations depend on strong delivery systems—robust testing, community engagement, and functioning prevention programs, along with strong data systems to monitor the effectiveness of these programs.

PEPFAR-supported PrEP programs should be the solid foundation on which to introduce LEN (a clear Administration priority), but, instead, they are now introducing LEN when almost half the PrEP initiations are gone, and community-based and patient-centred prevention programs are diminished.

The implications are clear. Reduced prevention today means higher HIV incidence in the future. That effect is not yet be visible in current data, but it is a well-understood dynamic in public health.

None of this diminishes PEPFAR’s extraordinary achievements. On the contrary, it underscores what is at stake. The program’s success has always rested on a comprehensive approach that combines treatment, prevention, data, and community leadership. When one part weakens, the entire system is at risk.

The path forward requires a more balanced reading of the evidence.

First, prevention must be restored as a central pillar of the response. Testing, PrEP, and community-based services are not optional—they are essential.

Second, key populations must remain visible and prioritized. Data that fail to capture their experiences cannot guide effective policy.

Third, transparency must be preserved. Reliable, consistent data are the foundation of accountability and trust.

Finally, investment must match ambition. Ending the HIV epidemic will require sustained resources, not less.

For more than two decades, PEPFAR has shown the world what is possible when data drive action. The challenge now is to ensure that the data are shared in full, understood in context, and used to strengthen the global HIV response.