The missing constituency in healthcare

Matthew Zachary’s essay is a timely provocation for a movement that has historically drawn strength from specificity. For 30 years, disease-specific advocacy—from breast cancer to rare genetic disorders—has funded research, destigmatized conditions, and created communities of support. Yet Zachary’s central insight is that this very fragmentation now limits the movement’s political leverage. When patients organize by diagnosis, they compete for scarce attention and resources; when they unite as “patients” first, they become an undeniable demographic force. His argument echoes the logic of other identity-based movements, where shared status outweighs internal differences. The challenge, however, is practical and emotional. Patients often feel a deep loyalty to their condition-specific tribe; the intimacy of shared symptoms and treatment journeys is hard to replicate in a broad coalition. Zachary acknowledges this tension but insists that a “civic identity” need not erase those bonds—rather, it can elevate them. By framing patients as stakeholders in a broken system, he shifts the narrative from “my disease” to “our healthcare.” This is a compelling reframe, especially as insurance battles, drug pricing, and mental health crises affect nearly every American family. Critics might argue that a unified patient identity risks diluting the urgency of rare diseases, which already struggle for visibility. Yet Zachary’s point is not to abandon niche advocacy but to build a superstructure that amplifies all voices. The recent bipartisan push on site-neutral payment reforms and the Inflation Reduction Act’s drug pricing provisions show that cross-disease coalitions can win. His reflection is a call to action for the next generation of advocates: to see themselves not just as survivors or warriors, but as citizens with a shared stake in a more just healthcare system. Whether the movement can coalesce remains an open question, but Zachary’s vision is a necessary north star.