Building a Unified Patient Identity in Healthcare Advocacy

Over the past thirty years, organizations like Families USA, One Nation Overcharged, and Patients Over Profits have worked tirelessly to advocate for patients’ rights in the United States. Their efforts have led to significant victories by uniting people, educating the public, and fighting the existing system. Yet, despite these accomplishments, a crucial element remains missing in this endeavor.

At the core of this issue is identity. Patient advocacy groups have long gathered people around specific diagnoses, benefits, or policy priorities. Cancer patients focus on research, rare disease communities seek treatments, and seniors defend Medicare. Each of these missions is essential. However, they approach the problems separately, unlike the healthcare industry, which addresses them collectively.

There has not been a nationwide attempt to organize people based on their shared identity as patients. This does not mean categorizing them as cancer or Parkinson’s patients, but recognizing them simply as patients. Many individuals face insurance denials, deal with Medicare intricacies, and encounter a system that treats people as administrative transactions. This common experience unites them, not their diagnoses.

According to the National Cancer Institute, as of January 2025, around 18.6 million Americans had a history of cancer, and this number is expected to reach 26 million by 2040. This, along with the chronically ill, caregivers, uninsured, and underinsured individuals, forms a powerful but untapped constituency. A committed minority organized around a shared identity can be incredibly influential.

The patient community doesn’t need to convince others that the healthcare system is flawed. Instead, it needs to mobilize the individuals who have already experienced these flaws. Their personal grievances hold political significance. Although patients have the numbers, they lack a unifying identity. Nobody has urged them to see themselves as a cohesive constituency. This notion is practical, not philosophical.

Organizations in the healthcare advocacy field have established the necessary infrastructure, expertise, relationships, and public trust. However, they lack the connecting force that helps individuals recognize their shared struggles. This unification doesn’t require creating a constituency out of thin air. It needs to be recognized and named.

The future of patient advocacy lies in helping individuals see themselves as part of a civic community. This shared experience is more than personal hardship. It is a political and economic identity. It’s about people with common interests who have the power to protect those interests.

Matthew Zachary, a 30-year brain cancer survivor, emphasizes this idea in his journey from founding Stupid Cancer to becoming a voice for unifying patient identity. His experiences reflect the importance of recognizing and mobilizing patients as a single, powerful constituency rather than isolated communities.