Organizations like Families USA, Patients Over Profits, and others focus on patient advocacy, facing the challenges posed by the healthcare system. They have achieved victories through perseverance and public education. However, a key element remains absent in these efforts.
Personal Insight into the Healthcare System
As a 30-year brain cancer survivor, I founded Stupid Cancer in 2007 due to the lack of community support. My understanding of American healthcare comes from personal experience rather than policy studies. This perspective underscores the need for patient identity to be a central focus in advocacy.
The Current Approaches and Their Limitations
Patient advocacy strategies generally involve either raising moral awareness of issues or engaging in policy advocacy. Both have led to significant achievements. Yet, the rapidly adapting system often thwarts these gains. A Families USA poll from July 2026 showed 94 percent of Americans want Congress to address healthcare costs, indicating that awareness is not the issue. Instead, the problem lies in not viewing patients as a united force.
The Need for a Shared Patient Identity
Organizations tend to group people by specific diseases or policy goals. However, a collective identity as patients could strengthen advocacy efforts. This identity transcends individual conditions and experiences, such as dealing with insurance denials or navigating complex systems like Medicare.
According to the National Cancer Institute, 18.6 million Americans lived with cancer as of January 2025, with projections reaching 26 million by 2040. Including the chronically ill and those dealing with insurance challenges highlights a vast untapped constituency.
Transforming Advocacy with a New Perspective
A successful movement doesn’t require overwhelming majority support. It requires a dedicated minority sharing a common identity and focused efforts. Patients must recognize their experiences as political capital, not just personal grievances.
Over the past 30 years, patient advocacy has developed significant infrastructure and trust. The missing element is a unifying identity that connects diverse patient stories into a single narrative.
A Practical Path Forward
Patient advocacy does not require new organizations but a redefined constituency. Patients should view themselves as part of a civic group, not just disease communities. This identity is a political and economic one, dedicated to protecting shared interests.
Advocacy organizations should build on existing foundations, adding this new dimension. The goal is not to convince Americans of the system’s flaws but to rally patients around their existing constituency.
Matthew Zachary, a brain cancer survivor and author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare, advocates for a unified patient identity. He founded Stupid Cancer and serves as CEO of We the Patients.