"Fair Market Value" Can Go F*** Itself: The Price Tag on Our Suffering
Welcome to 'Muricuh
Let's start with the basics. You didn't ask for cancer. You didn't train for it. You didn't choose to get a degree in "When I Get Cancer" with a minor in "Trauma," so you're fully prepped in advance of when the shoe drops.
But somehow, after being gutted by the system and living to tell the tale in whatever form or fashion that means to your story—the very thing that broke you—is now up for sale.
Not to you. To "them".
Because in the life sciences Hunger Games, your pain has been itemized, spreadsheeted (is that a word?), and reduced to an hourly rate that makes unpaid interns look rich.
And they call it Fair Market Value. Fair to who?
Fair Market Value (FMV) was built for arms-length business transactions between people who didn't just crawl out of chemo or bury their kid. The concept came from the U.S. tax code and Stark Law regulations—meant to stop bribery, not to price trauma.
But now, it's been twisted into a "compliance tool" to calculate how little a billion-dollar company, an agency, or an entire conference industry can legally pay a dying person to share their story without getting sued.
That's not ethical.
It's surgical exploitation wrapped in legalese.
The Abacus of Doom
Let's pause for a second and talk about the goddamn calculator. Yes, there's a frieken calculator akin to a "suffer-ometer."
The National Health Council's FMV Calculator claims to fairly price "lived experience." Seriously? Gag me with a novelty spoon.
Who are these people? Who wakes up one day and thinks, You know what would make this whole cancer thing easier? A spreadsheet that determines how much a survivor's pain is worth per hour.
How dare they. Seriously, how dare they.
Can you think of anything more dehumanizing, demoralizing, shallow, callous, disheartening, and inhumane than putting a numerical value on suffering? Then, you can pretend to objectively quantify lived trauma through salary comparisons and PR job titles. Then, you can average out chemo side effects into a dollar figure like you're balancing a budget.
It's moral bankruptcy dressed up as compliance.
It's a system so afraid of being accused of paying us too much that they forgot the existential crime is paying us at all for the pain we've endured. If your first instinct in solving for equity is to whip out Excel, you're not in the business of justice. You're in the business of liability management.
But it gets worse!
The Absurdity of Pricing Suffering
The purported methodology includes data from Salary.com and PR firms and compares patient advocates to public relations reps and low-tier educators. Isn't that special? We've been reduced to an episode of Head of the Class-meets-Alice. RIP Howard Hessman.
Apparently, if you survived organ failure and bankruptcy, you're basically a part-time communications coordinator with some feelings. At most? A "contracted expert."
They even add "profit" and "overhead" to your rate, as if anemia, anxiety, bleeding, bowel obstruction, brain fog, bruising, constipation, delirium, diarrhea, dry mouth, edema, fatigue, fatigue, hairlessness, impotence, incontinence, infection, infertility, infertility, inflammation, insomnia, lymphedema, malnutrition, nausea, neutropenia, neutropenia, neuropathy, organ failure, and crippling stress were a bunch of freelance gigs.
Actual FMV range for patient advocates? $55–$120 an hour. Advanced "expert" patients might get $165–$235—if they're extra eloquent, photogenic, and trauma-cooperative.
If you want context, "professional" industry keynote speakers pull $25K per hour. Astronauts get $100,000. We get couch cushion money. (And not that nice kind of couch. I'm talking about the plastic-wrapped hermetically-sealed couches that our grandparents owned.)
The FML Stock Exchange
What does $90/hour buy you? Certainly not peace. Not closure. Not your fertility back. It buys you a chance to sit in a windowless breakout room while a VP of Business Cards "deeply values your voice," as long as it ends on time and doesn't question the agenda or cause a stir amongst the attendees at the "Patient Summit with no Patients."
They ask us to relive our worst day. Repeatedly. On demand. With a smile. Then they cut a check that doesn't cover therapy, child care, or the PTO you had to take to tell them how their clinical trial nearly killed you.
Try invoicing that under "miscellaneous suffering."
You can't put a dollar amount on hell. But they did. And worse, they standardized it and created a market for pain. And now, just like Uber drivers and DoorDashers, patients get "benchmarked" and "tiered."
It's Hunger Games meets Glassdoor. But instead of tips, you get a LinkedIn mention and a gas card.
What's the going rate for PTSD? For burying a child who couldn't access treatment in time? For losing your hair, your dignity, your home?
According to the industry, it's about 75 bucks an hour.
How The Hell Is This Justified?
They claim it's about ethics, compliance, and "avoiding undue influence." Basically, it's attorneys wearing Depends who are scared shitless of Stark and the Anti-Kickback Statute (I just learned about this!) Evidently, these were never designed to prevent fair pay for patient advocacy.
They say FMV prevents exploitation.
Whereas I say FMV is the exploitation.
It's a way to look generous while being cheap and to "compensate" without giving up control. It keeps patients poor, grateful, and easy to ignore, and that is not a partnership.
It's manipulation with a legal footnote.
Here's a radical idea: Pay people what they're worth and not what your lawyers can get away with. Stop forcing patients into a corner where we have to choose between rent and reliving the trauma of having to feed our kids while foreclosing on the house we've lived in for 20 years due to medical bankruptcy.
Do you want to use my story? Welcome to an IP licensing agreement. Do you want me on your advisory board? I'll expect an equity stake with a nice monthly retainer. Do you want me to travel, speak, and share my story with key stakeholders? The bidding starts at five figures, and business class is non-negotiable. (Food vouchers be damned.)
Better yet? Hire us! Find us! Elevate us! Why not let patients build the tables, not just sit at them for crumbs and stickers?
Mobilize or Stop Complaining
Until such time as there is a nationally mobilized and highly organized patient rights movement in this country, nothing will change.
Imagine the day when millions of us face the same direction with policy and legal protection reforms in our hands. For now, the industry will continue to run the math on our misery and call it fair.
My bottom line is that if your pain builds their brand, then you deserve equity. I've had enough with "but the exposure." So, for now, reply to the next solicitation you receive with a link to your Venmo.
MZ Out.