The Missing Identity in Patient Advocacy

For three decades, organizations like Families USA, One Nation Overcharged, and Patients Over Profits have championed patient advocacy. They have achieved real victories by building coalitions and educating the public about healthcare issues. Despite this success, a crucial element remains absent.

I am a survivor of brain cancer and the founder of Stupid Cancer. My insights into American healthcare come from personal experience, not from policy formulation. This perspective highlights a gap in advocacy efforts: the absence of a unified patient identity.

Moral and Policy Approaches

Patient advocacy strategies typically follow two paths. Moral witness collects and elevates stories of harm to foster public demand for change. Policy advocacy involves drafting legislation and nurturing coalitions to protect incremental progress. Both strategies have yielded results but face setbacks from an adaptable system.

In July 2026, a Families USA poll indicated that 94 percent of Americans want Congress to address healthcare costs. Awareness isn’t lacking. If structural change is elusive even with widespread agreement on system failures, the issue lies elsewhere.

Identity as the Missing Piece

Most advocacy efforts focus on specific illnesses or policy priorities. Cancer patients lobby for research; rare disease communities push for treatments. These missions matter, but they operate in silos. Conversely, industries shaping healthcare work collectively.

No significant attempt has been made to organize people around a shared identity as patients. This identity transcends specific diagnoses, uniting people through shared experiences, like battling insurance denials or navigating Medicare complexities.

By 2040, the National Cancer Institute projects 26 million Americans will have a history of cancer. Including individuals facing chronic illnesses, caregivers, and those dealing with Medicare, Medicaid, or marketplace plans reveals a vast, untapped constituency.

Movement efficacy doesn’t require a majority, just a dedicated minority with a shared identity. This patient constituency must not convince the healthy of systemic failures. Instead, it needs to rally those who have personally endured system shortcomings, framing their experiences as political capital.

Building the Constituency

Patient advocacy has developed robust infrastructure over three decades. The necessary expertise and relationships are in place. What remains underdeveloped is the connective framework that unites diverse patient experiences across the country.

Rather than establishing another organization, advocacy needs to help patients see themselves as a distinct civic constituency. This isn’t about creating something novel, but about recognizing an existing collective identity rooted in shared experiences.

This identity isn’t partisan. It’s fundamentally political, uniting those with common interests. Patient organizations should integrate this tool, helping patients see their potential as a constituency.

Matthew Zachary, a brain cancer survivor, authored “We the Patients,” founded Stupid Cancer, and co-founded We the Patients.