The Missing Piece in Patient Advocacy

For three decades, organizations like Families USA, One Nation Overcharged, Patients Over Profits, and others have been at the forefront of patient advocacy in the United States. Their efforts are vital and have achieved significant victories against a flawed healthcare system. The problem lies not with these organizations but with the system they are challenging.

Matthew Zachary, a 30-year brain cancer survivor, founded Stupid Cancer in 2007. His experience with the healthcare system comes not from policy rooms in Washington but from personal struggle. He argues that while moral witness and policy advocacy have yielded wins, these methods alone are insufficient. The real missing element is a cohesive patient identity.

Most advocacy groups rally around specific diseases or policy goals. Separate efforts emerge for cancer research, rare diseases, Medicaid defense, and Medicare protection. While all these missions are legitimate, they operate in silos. Meanwhile, healthcare industries act with unity. No large-scale attempt has been made to organize people around the shared identity of simply being a patient.

“What unifies them is not diagnosis, but shared experience.”

According to the National Cancer Institute, there were 18.6 million Americans living with a history of cancer as of January 2025. This figure could rise to 26 million by 2040. When combined with the chronically ill, caregivers, the uninsured, and those managing Medicaid or Medicare, a substantial constituency emerges.

A movement doesn’t need universal participation; it requires a committed minority with a unified identity. Those affected by the broken system should recognize their anger as political capital. A constituency should preempt harm rather than react to it.

Over 30 years, valuable infrastructure and public trust have been developed within patient advocacy. However, what remains lacking is the unifying factor that can connect individuals across diverse experiences with the healthcare system.

Zachary believes the solution is not the formation of new organizations or campaigns. Instead, it involves redefining patients as a single, civic entity. By seeing their experiences as more than individual grievances, but as part of a larger political identity, patients can collectively drive change.

Organizations need not alter their strategies but rather incorporate this framework into their existing efforts. The future of patient advocacy depends on recognizing and mobilizing this shared identity.

Matthew Zachary, author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare, emphasizes the power of collective patient identity in achieving systemic change in healthcare.