Over the last thirty years, patient advocacy has achieved remarkable outcomes with the efforts led by organizations like Families USA, One Nation Overcharged, Patients Over Profits, Healthcare Now, Docfluencers, Protect Our Care, Break Up Big Medicine, and the Committee to Protect Health Care. These groups have worked tirelessly to combat systemic challenges and have secured significant victories through persistent coalition building and public education.
Matthew Zachary, a brain cancer survivor and founder of Stupid Cancer, highlights that despite these achievements, the core issue remains unchanged. Rather than critiquing existing efforts, he suggests that the missing piece in patient advocacy is a unified identity.
Zachary does not claim expertise in policy. His insights come from personal experiences and navigating the healthcare system. Patient advocacy strategies have often taken two paths: moral witness, focusing on raising awareness of harm, and policy advocacy, emphasizing legislative action and coalition building. While both have generated success, they have failed to fundamentally alter the system.
A compelling statistic from a July 2026 Families USA poll reveals that 94 percent of Americans believe Congress should address healthcare costs. This suggests the problem lies not in awareness but in action. The missing element in advocacy is identity, uniting patients across different diagnoses and circumstances under one collective umbrella.
The focus should shift from organizing separate disease communities to forming a cohesive patient constituency. Zachary argues for an identity that transcends individual health issues, bringing together people who share experiences of battling insurance issues or navigating complex systems. This unified identity is absent, yet critical.
As of January 2025, the National Cancer Institute reported 18.6 million Americans living with a history of cancer, with projections estimating this will rise to 26 million by 2040. Beyond cancer patients, there is a vast community of chronically ill individuals, caregivers, uninsured or underinsured families, and those involved in Medicaid or Medicare Advantage plans.
A movement needs a dedicated minority united by shared identity. This group must encourage those already affected by the system to realize their potential political leverage. It’s about recognizing their grievances as political and economic currency, not just personal struggles. The patient community has the numbers, but lacks a defined identity.
Zachary emphasizes transitioning from viewing patients as part of disease-specific groups to seeing them as members of one civic constituency. He argues this approach is practical, not philosophical. A constituency understands its leverage and prioritizes preventing harm, rather than reacting to it.
Patient advocacy has built a strong foundation over three decades, comprising expertise, relationships, and public trust. What remains unestablished is the link that unifies various patient experiences into a cohesive narrative. Zachary’s initiative is about establishing a civic identity—a constituency that sees its experience as public capital.
This constituency needs acknowledgment, a clear voice, and recognition as the next step in patient advocacy. Matthew Zachary illustrates this necessity in his work, highlighting the importance of shifting the paradigm from awareness campaigns to mobilizing patients as a powerful political and economic force. His message to patients is to embrace their shared identity and leverage it for systemic change.
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