For thirty years, patient advocacy has achieved significant progress, yet something crucial remains absent. Leaders of organizations like Families USA, Patients Over Profits, and Healthcare Now have made impactful strides against a challenging system. They are not responsible for the current issues; the system is. Over the years, through steadfast efforts, these advocates have clinched victories using persistence, coalition-building, and public education.
Matthew Zachary, who has survived brain cancer for 30 years, notes a missing element despite these successes. As the founder of Stupid Cancer in 2007, his insights come from personal experience rather than policy expertise. He believes the missing link in advocacy is the lack of a unified patient identity.
Most major patient organizations rely on two strategies: moral witness and policy advocacy. While both have gained important wins, the system often adapts faster than reforms do. A Families USA poll revealed that 94% of Americans want Congress to act on healthcare costs, indicating awareness isn’t the issue. The challenge lies in uniting patients under a common identity.
Current organizations focus on specific diagnoses or policies—cancer research, rare disease treatments, Medicaid defense—but arrive separately when industries exert influence collectively. Few have organized around the shared identity of simply being patients.
People faced with insurance denials or navigating Medicare share a common experience, not defined by a specific condition but by being part of the system. The National Cancer Institute estimated 18.6 million cancer survivors in the U.S. by January 2025, projected to rise to 26 million by 2040. Including the chronically ill, caregivers, and those dealing with insurance complexities forms one of the largest untapped groups in the nation.
Effective movements don’t need a majority; they require a dedicated minority united by a shared identity. This patient constituency doesn’t need to convince the healthy that the system falls short. It needs to engage those already affected, turning their grievances into political action.
Patients have the numbers but lack a unified identity. No one has unified them into a constituency, yet this shift could be transformative. A cause activates after damage, while a constituency acts to prevent it.
The infrastructure of patient advocacy is strong, with established expertise, relationships, and public trust. What’s missing is the connection linking diverse patient experiences into a collective identity. Whether dealing with cancer in Phoenix or Medicare in Tampa, these aren’t isolated issues but parts of a shared narrative.
Matthew Zachary urges that patient advocacy doesn’t need another organization but a new perspective—viewing patients as part of a civic constituency. This identity is not inherent but a realization that shared experiences represent civic, political, and economic unity. Organizations must add this approach alongside existing efforts, encouraging patients to see themselves as a longstanding constituency.
Matthew Zachary is a brain cancer survivor, author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare, founder of Stupid Cancer, and CEO of We the Patients.