We The Patients LIVE: North Carolina Was Just The Beginning…

“What Is Patient Power?” Panel

 Last week, the inaugural town hall We The Patients LIVE Raleigh marked a beginning rather than an arrival. Everyday North Carolinians—patients, physicians, hospital leaders, lawmakers—came to examine how harm accumulates in healthcare and why it persists even when every institution claims benevolent intent.

We got clarity on what people inside a broken system want:

·      Patients want enforceable rights at diagnosis.

·      Clinicians want their medical judgment respected.

·      Navigators want their scope supported.

·      Policymakers want laws that protect constituents and survive implementation.

What we learned is that these interests intersect.

Representative Tim Reeder (R-NC) with WTP Co-Founders Matt Toresco, Matthew Zachary, and Sally Neely Nix

Matt Toresco – How healthcare rewards speed and opacity. He walked through how contracts fracture into thousands of price lists across states and told the story of how an insurer processed a fifteen-cent reimbursement.

Alice Crisci – How hiding in advocacy is inevitable in a system that refuses to respond. She share her insights from the place where policy failure meets lived consequences.

Sally Neely Nix – How patients can join forces for good. She talked about converting shared frustration into action across election cycles and policy fights.

Delon Canterbury – How state level policy is the key to national issues in healthcare. He described the steady erosion of community pharmacies and the economic pressures created by pharmacy benefit managers on independent pharmacies.

Scott Thorpe – How operational constraints force compliance. He shared better ways to implement public policy.

Monica Bryant – How Affordable Care Act protections are eroding. She described appeals processes that exist formally and fail operationally, and enforcement gaps that disproportionately burden those already navigating disadvantage

Matthew Zachary – How responsibility, accountability, and trust erode in a system designed for profits. We the Patients is the start of changing the system from within.

Veteran North Carolina journalist Tim Boyum provided his expert moderation, and Representative Tim Reeder took copious notes of what constituents had to say.

We The Patients Co-Founders Sally Nix, Matthew Zachary and Matt Toresco along with WTP Live Speakers Alice Crisci and DeLon Cancerbury

What emerged across the night clarified several realities:

·      Harm begins earlier than most policy conversations acknowledge.

·      Diagnosis triggers decisions before patients understand options.

·      Coverage explanations arrive fragmented and late.

·      Prior authorization laws include exemptions insurers routinely exploit.

·      Clinical trial discussions depend on chance rather than standard practice.

·      Fertility preservation counseling reflects institutional culture rather than obligation.

·      Navigation remains underpowered by design.

·      Reimbursement codes cap usage and undervalue time.

·      Workforce pipelines fail to scale.

·      Credentialing barriers sideline community-based support Financial exposure remains opaque until bills arrive.

By then, choice narrows.

Healthcare does not change through declaration. It changes when aligned actors stop pretending current arrangements serve anyone except inertia. We the Patients LIVE Raleigh created a space where people described what the system does rather than what it claims to do.

We started something new because the old approach exhausted credibility. What follows depends on sustaining the discipline this moment demands.

Matthew Zachary and Spectrum News’ Tim Boyum