Screening
Leveraging advocacy to shape public health data: The case of eating disorder surveillance among US youth Ariel Beccia* Ariel Beccia Sam Hahn Brittany Celebrano Allison Ivie S. Bryn Austin
Background: Eating disorders (EDs) are a growing public health threat for US youth, yet routine surveillance ceased when relevant items were removed from the CDC’s Youth Risk Behavior Surveillance System (YRBS) in 2015. Here we report on a multi-sector campaign aimed at addressing this critical data gap. Methods: Our goal was to build support for the re-inclusion of items assessing EDs in the YRBS. Through strategic advocacy, communications, and community building, we targeted four key channels: Congress, community advocates, state YRBS coordinators, and media. Results: Our campaign generated significant momentum. Congressional engagement yielded two bipartisan letters to the CDC urging inclusion of ED items in the YRBS, along with provisions in federal budget bills. Community advocates organized a Capitol Hill advocacy day with direct engagement from Congressional members. Collaboration with state YRBS coordinators led to the formation of a formal working group, an online training program, and a proposal to the CDC calling for ED item inclusion. The campaign also garnered national media attention, further amplifying its message. These efforts culminated in a major victory: In July 2024, the CDC announced the addition of a binge eating item to the 2025 National YRBS – the first time in over a decade that representative data on EDs will be collected among US youth. Additionally, items assessing binge and restrictive eating were added to the recommended item pool for state-specific YRBS surveys. Conclusions: The CDC’s decision to assess binge eating is a critical step toward strengthening ED surveillance in the US. Such data will make it possible to monitor trends in prevalence, identify spikes, and investigate inequities, ultimately informing more effective interventions. Our campaign also underscores the vital role that epidemiologists play in data advocacy efforts, highlighting how our expertise can shape public health priorities and drive meaningful change.