Are There Any Patients At Your Patient Conference?

Every year, the healthcare conference circuit churns out dozens of bloated and pointless so-called "Patient" events.

With a small handful of notable exceptions, they slap the word "patient" on the banner, flood inboxes with feel-good marketing, and pack the agenda with executives who have never sat in an infusion chair or opened a collection notice while still bleeding from surgery.

And not one actual patient is invited to speak.

Zero.

CAVEAT: Sometimes a speaker happens to be a cancer survivor. However, the badge reads 'Executive Vice President at BioPharma Inc.,' not 'patient.' That is an unfair bait-and-switch. Lived experience gets buried under the logo on their slide deck. Calling that representation is dishonest.

Have you seen the registration fees and sponsorship pricing? These events make bank! But, where does that money go? Beyond the AV crew, the off-brand Philly cream cheese, and the "Barsrtucks" knockoff coffee, who benefits? I dare claim Certainly not the patients whose names get plastered all over the marketing copy.

This is not an accident. It is an industry pattern. Patients are props and tokens. We are the buzzword that puts asses in seats. Meanwhile, the people who live and die inside this system are locked out of the room, the same room where policies get normalized, profits get justified, and self-congratulation passes for progress.

The hypocrisy is staggering, and for decades, it's been an unending slap in the face to the hard work advocates do every day.

They celebrate empathy while patients are stuck fighting prior auth for chemo and struggling to feed their kids. They talk innovation while people crowdsource insulin on GoFundMe. They eat muffins in air-conditioned ballrooms while families plan funerals over surprise bills.

Look, I am glad the conversation even happens in the first place. I also want transparency. If you call it patient experience, show me how actual patients with raw stories are intrinsically involved without contingency, how the dollars impact actual lives, and how it changes the mess we are still screaming about decades later. Until then, please spare me the empathy theater.

If you buy a ticket, sit on a panel, or slap your logo on the banner, you hold the power to change this. Demand better. No patients at your patient event? Pull your sponsorship. Pull your name. Refuse the invite. Make it clear you will not bankroll empathy theater while real people fight like hell just to live.