🧐 AYA PUBLISHED STUDY ALERT 🧐

”A Community Led Approach to Addressing Health Disparities among AYA Cancer Survivors” shows what many of us in this movement already know in our bones. Patients forced to wait for permission to speak never get heard.

The authors—Lauren Ghazal, Alison Silberman, Ruzette Solis, Julye Williams, Alexandra Davis, Jacqueline Shanley, Lauren Martino, Catherine Benedict, and Bridgette Thom—describe how Stupid Cancer’s Health Equity Initiative (2021–2023) used focus groups, working groups, and town halls to surface the ways racism, homophobia, transphobia, and ableism shape supportive cancer care for AYAs.

Three themes emerged from survivors:

1) Perception
2)Transition
3) Representation.

Perception means how bias influences who gets listened to. Transition means the vulnerable handoff from active treatment into survivorship or other systems. Representation means who sits at the table and who holds power. From there, the community co developed four solutions.

The core lesson: equity and representation belong at the foundation of AYA cancer care, not added on later.

I built Stupid Cancer, among many obvious reasons, to confront the imbalance of power between institutions and patients. That same ethos runs through this paper. When I read “community driven conversations,” I see years of trial, error, and earned trust. This article reflects an intervention in motion, not a final word. It documents a process where survivors help shape solutions in real time.

That is the signal here.

The AYA movement has matured. Advocacy groups no longer just fill seats or provide recruitment lists. They lead the design, the framing, and the questions.

This traces a direct lineage: the Livestrong Young Adult Alliance in the early 2000s, the birth of i[2]y I’m Too Young For This Cancer Foundation, and now a generation pushing for equity, outcomes, and accountability.

The work ahead will always matter. Progress means shifting from asking survivors for feedback to handing them real authority. Budgets, metrics, and priorities must reflect their lived experience. That is the challenge and the opportunity this paper highlights.

If this hits home, toss it a like, a repost, comment, or tag someone you may be ambivalent about. One click makes a bigger difference than you think.

SOURCE: https://www.liebertpub.com/doi/10.1089/jayao.2025.0008