Health surveillance data is disappearing from federal systems at an alarming rate, raising urgent concerns about the nation’s ability to detect and respond to emerging disease threats. A newly released online tracker from dataindex.us documents at least 28 deleted federal datasets and 338 altered data collections spanning more than 60 agencies. Health data accounts for roughly 40% of all terminated or modified records.
The tracker, launched by data policy experts and researchers, identifies specific surveillance systems critical to disease detection and outbreak response. Most notably, the Substance Abuse and Mental Health Administration’s Drug Abuse Warning Network (DAWN), a near-real-time system for tracking drug-related emergency room visits and identifying emerging overdose trends, has stopped updating entirely. The National Violent Death Reporting System, which links death certificates, coroner, and law enforcement records to track patterns of violent deaths, has had gender identity items removed. The Pregnancy Risk Assessment Monitoring System, which tracks maternal health experiences, continues data collection only as individual states fund it, with standardized national publication and weighting now ceased.
Multiple CDC surveillance systems have undergone substantial changes. The National HIV Surveillance System has had gender identity variables removed from case report forms. The Emerging Infections Program, which coordinates state and academic partners to detect emerging diseases like foodborne illness and invasive infections, had transgender response options removed from 12 case report forms. The STD Surveillance Network, which feeds annual sexually transmitted infection surveillance reports, underwent revisions in March 2025 that removed 115 data elements and added 87 others, with specific gender identity items removed under executive order guidance. The National Outbreak Reporting System, through which state and local health departments report foodborne, waterborne, and enteric disease outbreaks to a national dashboard, underwent “minor clarifications” to comply with executive orders without public detail on which fields changed.
Longitudinal surveillance systems derive much of their value from continuity. Gaps in historical data can obscure trend lines, complicate outbreak modeling, and hamper comparative research for years after the fact. Real-time surveillance systems like DAWN were designed specifically to identify emerging health threats before they became widespread, and their loss removes a tool for early detection during periods when patterns remain geographically uneven and difficult to predict.
The changes also affect foundational population-health data. The Behavioral Risk Factor Surveillance System, a state-coordinated telephone survey that tracks chronic conditions and preventive care behaviors, has had gender identity items removed. The National Survey of Drug Use and Health, which measures substance use and mental health at the population level, has had its gender identity question deleted and its sex-at-birth question reworded to binary options. Traveler-based Genomic Surveillance, the CDC program that samples arriving international travelers to detect new pathogen variants, has had surveillance data collection altered.
Sources and further reading:
Trump 2.0 has deleted or altered nearly 400 US datasets, endangering public health, education and more — The Guardian
Federal Data Terminations Tracker — dataindex.us
This article was researched and sourced by Global Biodefense editors and reported with Claude AI assistance for drafting and editing.