Building a Unified Patient Constituency in Healthcare Advocacy

For decades, organizations like Families USA, Patients Over Profits, and Healthcare Now have fiercely advocated for healthcare reform. They face a system fraught with challenges. While they have achieved significant victories through determination and coalition building, something crucial is still missing.

As a 30-year brain cancer survivor and founder of Stupid Cancer, my experience within the healthcare system drives my perspective. I am not a policy expert. I am a patient, and that often-overlooked credential should be central to advocacy efforts. Most organizations adopt two strategies: moral witness and policy advocacy. The first highlights harm and relies on public support for change. The latter involves policy legislation, coalition building, and defending progress. Despite successes, the system often outpaces reform.

A 2026 Families USA poll reported 94% of Americans believe Congress should address healthcare costs. This is not an awareness issue. There’s a deeper problem when widespread agreement on systemic failure persists without significant structural change.

The missing piece is identity. Most patient advocacy groups organize around specific diseases or benefits. Each cause is valid, yet they function in isolation, while healthcare industries operate collectively.

What has not been attempted on a national level is uniting individuals under the single identity of being a patient. Whether they have battled insurance denial or navigated Medicare, many share this unifying experience. The population includes millions with chronic illnesses, caregivers, and those dealing with a complex system. This constitutes a vast, untapped constituency.

Movements require a committed minority united by shared identity and collective action. It is not about persuading unaffected individuals but organizing those already impacted. Their struggles form political capital, not only personal grievances. Patients need to recognize themselves as a constituency—a practical, not philosophical, realization.

Despite 30 years of advocacy building expertise and public trust, organizations have yet to form the connective tissue linking individual experiences. A cancer survivor in Phoenix and a caregiver in Pittsburgh are not isolated; their stories are interconnected.

Patient advocacy does not need another campaign. It needs to unify patients as members of one civic constituency, acknowledging their shared experiences as a civic identity. This identity transcends partisanship, aligning people through common interests and collective protection.

Current organizations need not overhaul their approaches, but complement them by emphasizing this united identity. The future of patient advocacy involves recognizing patients as a constituency with inherent power. The task is not inventing this constituency, but naming and mobilizing it.

Matthew Zachary survived brain cancer at 21, authored ‘We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare’ (Wiley), founded Stupid Cancer, and serves as CEO and co-founder of We the Patients.