After 30 years in patient advocacy, I seem to have wandered into healthcare policy. A conversation with Chuck Melendi about insurance, incentives, political power, and what happens when patients stop merely navigating the system and start organizing to change it.

I went to RosettaFest expecting to give a keynote. I left with the Marshall Allen Award and a completely different understanding of employer-sponsored healthcare, patient advocacy, and why the companies we work for may be one of the most overlooked forces shaping American healthcare.

North Carolina created a healthcare affordability commission with hospitals, insurers, employers, and policy experts at the table, but no patients. If we are serious about fixing healthcare, the people who navigate it, pay for it, and depend on it must have actual power in the room.

Every major source of patient data in this country is compromised by whoever paid for it. The We The Patients National Patient Perspectives Poll changes that. 5 minutes. Anonymous. The data belongs to patients, not institutions.

ASCO 2026 delivered extraordinary advances in cancer research, including a standing ovation for a pancreatic cancer breakthrough. Yet the dominant conversation centered on something else: the widening gap between scientific innovation and patients’ ability to access it.