The National Health Council Is Hosting A Conference On AI And Patient Advocacy. There Are Zero Patients On The Panel.
The National Health Council Is Hosting A Conference On AI And Patient Advocacy. There Are Zero Patients On The Panel. Let me say that again. A conference about patient advocacy. Without patients. (And *please* help me stand corrected if I somehow missed something)
This week, I watched my LinkedIn feed fill up with really, really smart people explaining healthcare.... to each other. 🤦🏻♂️
Employer benefits leaders, founders, consultants, policy voices. Threads on PBMs, prior authorization, biosimilars, pricing. Clear logic. Strong engagement. Familiar language. Jargony jargon jargon.
And *zero* patients in the chats. (Well, maybe some like me in the comments professionally trolling with Curious George-like gawky wonder)
Mark Cuban is always on brand reposting industry voices exposing broker kickbacks and PBM games. Bravo as always, my friend. But the echo chamber he is amplifying still talks ABOUT patients, not WITH them.
Is it 1993? Did the Macarena just drop?
I'll say this again for an upteenth time. Patients are not a "use case". We are not a testimonial. We are not a stock photo in a slide deck for a Hill Day grinder money ask. We are executives. Parents. Professionals. Investors. Scientists. Humans who *happen to have* survived the system you are all debating. And we are knocking at the window while you discuss us inside like John Cusack holding up the boombox listening to Peter Gabriel.
80% of denied claims get overturned but 0.2% of denials are ever appealed. That gap is not a rounding error. It's your cap table screaming out into the night. It's the American Healthcare system filtering out people who do not have the time, energy, or insider knowledge to fight back. (Unless Mark "Patron Saint of Patients" Cuban swoops in to pay their debt for them)
I survived brain cancer at 21. I have spent 25 years IN this industry AND on the receiving end of it, and those are indefatigably *not* interchangeable perspectives. One explains how the system works. The other shows what it does when it crushes a human being.
Until both sit at the same table, this stays exactly what it looks like from the outside. A very smart echo chamber talking about people instead of with them.
This is why I wrote "We the Patients." Because after decades of watching patients get discussed instead of included, we needed a [nonviolent] manifesto. A playbook. A [peaceful] weapon you can hold in your hands.
Welcome to 2026: The Year of the Patient where the sick shall inherit the ballot
If this hits home, drop your story in the comments, Or how about a facepalm repost? Every impression pushes this in front of more people who deal with the same mess. Are you new here? My condolences and my thanks. Follow along and stay loud with the rest of us.
