I have been in a lot of rooms where a policy gets sold, and I have learned to listen for a particular sound. It’s the sound of a name doing work that the mechanism underneath it can’t do.

Prescription Drug Affordability Board. Say it out loud. It’s airtight. What are you going to be, against affordability?

I sat with a legislator here in Virginia a while back who told me, plainly, that we needed one of these boards because of inflation. He wasn’t being cynical. He wasn’t hiding anything. He had read the name and drawn the obvious conclusion, the same way you or I would.

That conversation has stayed with me, because it’s the whole problem in one exchange. The name is doing the work. Almost nobody has looked underneath it.

So this episode is me looking underneath it, with three women who have been living there for years.

Here is what everyone who takes a medication needs to know. When one of these boards sets an upper payment limit, it caps what your insurance reimburses the pharmacy. It does not change the price of your drug. It does not cap what you pay. Bridget Dandaraw-Seritt in Colorado says it plainly: you are still on the hook for the rest.

And whether any savings ever reach you isn’t a requirement. Tiffany Westrich-Robertson took me into the fine print, and the word she landed on has been rattling around my head ever since. It’s an “or.” The patient, or the state, or the insurer, or the pharmacy benefit manager. Four names on a list, and only one of them is you.

I want to be fair here. Nobody in this story set out to hurt patients. The people on these boards are volunteers. Tiffany says most of them will tell you they took the job because they wanted to help patients, and that she believes them. I believe them too. They were told this was about saving patients money. Some of them are figuring out that it isn’t, and that has to be a disorienting thing to discover about work you volunteered for.

And some boards are getting it right. Tiffany points out — and I think this is the single most useful fact in the whole episode — that the boards without the authority to set a price cap are the ones landing solutions that actually reach patients’ out-of-pocket costs. The tool everybody fought for turns out not to be the tool that helps.

Then there’s the board that told her team, straightforwardly, that it isn’t supposed to focus on patients’ out-of-pocket costs at all. Its job is capping costs at the system level for insurers. I want to give them real credit for saying so out loud. That’s more honesty than most of this debate offers. But read that sentence again and notice what it’s describing.

The part I can’t put down is Bridget’s number.

Many of these boards use something called a quality-adjusted life year to decide whether a drug is worth covering. One is perfect health. Zero is no benefit at all. Bridget has been on the same biologic for twelve years and it has given her her life back. It scores 0.13.

I asked what 0.13 looks like. Her spine has fully collapsed from a rare genetic disorder. She is still walking. Still gardening. She uses a wheelchair for long distances. And what she told me she wants — the thing she named — is to be able to get up and change the channel when she can’t find the remote. To take her grandkids outside.

That is a life. A spreadsheet scored it at 0.13.

And then there’s Vanessa Lathan, who complicated everything I thought I understood about this. Vanessa has fifteen years in public health and health policy. She lives with an autoimmune condition. She has never been on a biologic — she’d never heard of one until she joined this coalition. Most of her journey, she says, has been heating pads and prayer.

You cannot lower the price of a medication into a patient’s hands if nobody ever offered it to her.

Vanessa said something else that I keep turning over. She considers herself privileged — she works in this field, she has the access, she has the information — and she still learned more about her own condition from other patients than from the healthcare system. If she couldn’t get there on her own, what exactly are we asking of everyone else?

I say all the time that you have to be the CEO of your own healthcare, and I mean it. But Vanessa is doing everything right and the system is still not meeting her. That’s not a personal failure. That’s a design.

Affordability is not a price. It’s a relationship — between your coverage, your deductible, your assistance, your income, and your life. Any policy that treats it as a single number is going to miss most of what’s actually happening to you.

And if a policy is built in our name, then we have to be the ones it’s actually for.

The coalition behind this work is collecting patient stories right now. Any form — video, writing, a few sentences. Vanessa’s line about it is the most generous framing of advocacy I’ve heard in a while: there’s nothing too small. Start where you’re at.

Share your story: [PIC STORY FORM LINK]

They call it the long goodbye. I’ve used the phrase myself. But it’s gentler than the thing it describes, and I’ve started to resent it a little.

A goodbye is something you get to say. To someone who knows you’re saying it.

My stepmother Sandy died last week. She was eighty. I recorded an episode about her this week, and it’s linked below if you want it — but that one has a job to do. It’s about early detection and insurance coverage and two bills sitting in a committee, and I stand behind every word of the advocacy.

This isn’t that. This is the rest of it.

Sandy was glass-half-full in a way that should have been annoying and somehow never was.

She had cat things all over her house. Cat mugs, cat towels, a cat clock. A Felix the Cat clock. Which was funny, because early on she had announced to all of us, with some conviction, that she was absolutely not going to become the crazy cat lady.

She became the crazy cat lady. Gloriously. She showed Himalayans — took them all over the country, and once as far as Russia, which I still can’t entirely picture. Pixie, Luke, Leia, Yoda.

When she died, her goddaughter Gennifre said there would be a thousand cats waiting for her at the pearly gates.

At least a thousand. Gennifre’s probably low.

This is Sandy, Gennifre and me about two years ago, it seems like yesterday and a lifetime.

Gennifre and I go waaaay back. Back to before my Dad and Sandy were married. Back to an era where you ran feral in the summer afternoons while your parents worked. Lucky for us (and our parents) our biggest adventures were walking to the grocery store to make dinner, of course we only did that once that I can remember. I’m certain that we also did things where we would not answer yes if someone were to ask us if we thought our actions were “the best choice.”

One afternoon I was reading the Colorado Cache cookbook and I decided we were going to prepare chicken divan, cheesecake and margaritas. I was older, so I decided most things. After we returned from the grocery store with our sack of needed ingredients, I called Sandy to see if she had any te-quill-ee-a.

“Sandy, we need te-quill-ee-a for dinner,” I said with as much authority as an eleven year old could muster.

“You need what!?!” she asked, trying not to laugh.

“Te-quill-ee-a. We want to make margaritas for everyone.” I replied.

I think Sandy told this story (while still trying not to laugh) in my presence at least 100 times over forty years.

The end of that story is we did make a fabulous dinner for everyone, and my Dad made the margaritas. I can’t promise you he did not also make one for us, after all, it was the 80’s.

I was married on August 12, 2007 at the Meadow Creek Lodge in Pine, Colorado. When we were planning the wedding I had no idea where I wanted to get married. I was so much later than most of my friends even getting married, that you probably could have talked me into Vegas or the Los Angeles County Court House. I think my Mom would have given me money to do either, but Sandy had other ideas.

Sandy was always ready to hug you, listen to you, help you untangle whatever mess you’d made. And yes, help you find a magical wedding venue that you never would have even considered on your own.

Here’s the part I’ve never really talked about publicly until this podcast.

Sandy gave forty years to the Colorado Hospital Association. She was Director of Education and Member Services. She was good at it. She loved it.

She started forgetting things in her late fifties, and they started taking her responsibilities away, one at a time, until there was nothing left to take.

I’m not angry at anyone. There simply was no test to give her. In the mid-2000s, confirming Alzheimer’s meant a spinal tap or a PET scan, and nobody sends a fifty-eight-year-old for either one because she’s misplacing things and forgetting that she has already bought milk three times this week.

I’m not sure what she was told it was or if she even asked. We know more now than we knew even five years ago, honestly. Lucky for future Sandy’s — there is a lot of research happening, but we need a lot more.

One researcher did scan her brain around 2007 with something new that was supposed to “catch this early”. It came back negative. Her brain was declared fine. My dad and I looked at each other in the parking lot and said, that test is going nowhere.

It didn’t.

Even Sandy knew on some level she should get long-term care insurance. It was the smartest thing she did. They do not make policies like the one she had anymore. Knowing what it costs, I am not sure I would even recommend today’s plans. You are better off saving your money for the day you hope will never come. After all, most of us want to go quietly in the night while sleeping peacefully in our own bed. My recommendation? Save your money and aim for staying in your own bed as long as possible.

Sandy wasn’t ready to retire when she did. Her brain retired without her. I’ve said that line about a dozen times this week because it’s true. I’ve never known anyone as content in her life, job and hobbies as Sandy was. I wish she was still here doing them.

The thing nobody prepares you for is that it isn’t one loss. It’s a hundred small ones, spread over years, and you don’t get to grieve any of them properly because she’s still right there in front of you. Yes, there are moments of Sandy and I cherished every one, but the Sandy I wanted to hang out with was now someone I was tasked with protecting.

There were stretches where she’d tell me — flatly, like she was reporting the weather — that my dad had left her for another woman.

He hadn’t. He was her husband until the day he died.

The one thing I really learned over the past six-plus years was that you can’t argue with Alzheimer’s. You can’t produce evidence. There’s no version of the conversation where you win. You pat her hand, you agree that it sounds hard, and then you go sit in your car in the parking lot and cry, and then you drive home and make dinner.

She brought a date to my father’s funeral. Her own husband’s funeral. She had no idea where she was or who we were burying.

I don’t know what to do with that memory even now. Some days it’s the saddest thing I’ve ever seen. Some days I think — well, at least she wasn’t sad that day. At least on the worst day of our lives, she was somewhere else.

Both of those are true. That’s the disease.

My Dad died in the same facility where Sandy passed last week. He died in quarantine, and the only blessing in his passing so quickly after arriving was that he had dialysis. No one figured out how to lock down a dialysis patient during Covid and for that I will be forever grateful. I picked him up three times a week and dropped him at dialysis, and on those rides with him I broke every Covid rule imaginable because something inside me knew our time together was going to be short.

I do not regret being a rebel.

I did not bring Sandy and my Dad into my home. I couldn’t.

I had two young children, twin boys. My mother-in-law was already living with us. My dad was recovering from a broken leg. Our miniature schnauzer, Harlow, genuinely terrified Sandy. There were lots of stairs.

I’ve made peace with it, mostly. But I want to say it out loud in case it can help someone who is reading this, because I know how many people there must be out there carrying this exact guilt in silence.

When I was a kid I wanted all of my family and friends to live on one giant cul-de-sac. All of us, in a ring, walking into each other’s kitchens. I still think that’s one of the most beautiful ideas there is. It just turns out that wanting it and being physically able to build it are two very different things.

My parents came to me kicking and screaming at seventy-three. Too late. By then she was already unable to care for herself (their car insurance was a mortgage payment at this point due to the accidents they were racking up).

If you’re of retirement age and reading this, go be near your kids. Not because they don’t love you or wouldn’t show up for you—they will. But they’re also working, raising children, and managing lives of their own. When an emergency comes, they can’t simply pick up their entire lives and move them to you. Being closer before the emergency happens makes it possible for them to be there when you need them most.

And it will come as an emergency. It came as one for us.

My Dad arrived at Dulles at around 3:00 in the afternoon the day the country shut down.

I got a call three days out — if your parents aren’t here by six o’clock on March 17th, we can’t let them in. So I moved them into assisted living, sight mostly unseen, just before the clock stuck six on March 17th, 2020.

Then the doors closed. I did not see Sandy again until the day my Dad died.

I don’t think we’ve reckoned with what COVID did to people with dementia. Everyone else in America was frightened, and being frightened at least gave us a reason. We knew why we were alone.

Sandy got none of that. You could explain the virus to her and thirty seconds later it was gone. There’s no fear without the ability to hold a threat in your head. There’s no patience without believing the thing will end.

There was just: my family stopped coming. Every day. Brand new every morning.

When they finally cracked the doors open, they put up a plastic outdoor room and handed us a karaoke microphone to pass back and forth.

Oh, the irony of that sentence.

I would walk behind the booth to Sandy’s side, unwrap the sandwich we were supposed to be eating together, hand her the microphone, walk her through turning it on, walk back around to my side, and wait. And she’d talk — never into the microphone. And then she’d get confused and set the microphone down.

My son James finally just walked around the plastic and sat down next to her.

Mommy, I just want to sit by Nanny. I don’t want to talk into this dumb microphone.

He was six and he was right. It was ludicrous. That facility was doing its absolute best inside rules written by people who had clearly never sat across a clear plastic wall from someone with dementia.

She declined faster in those months. I’m certain of it. Every family I’ve talked to since says the same thing.

Sandy’s mother, Grandma Roberts, lived to ninety-eight. I remember her in her seventies, back from some trip overseas, handing twelve-year-old me gold lamé lipstick holders I had absolutely no use for and treasured anyway.

Sandy died at eighty.

Grandma Roberts was traveling the world in her 70’s. She did die of dementia complications, but she was 98.

At 73 Sandy could not drive to the grocery store and remember to take the groceries out of her car. This disease took almost twenty years off a woman who came from people who live to almost a hundred — the last of her working life, her travel, her cats, and any chance of my kids knowing her as anything other than their Nanny who needed help. Their Nanny who they loved and watched slip away.

And here’s the only policy thing I’ll say in this post, because I said the rest of it on the microphone.

If you want to listen to the episode you can stream below — and here is the [LINK] to more about the show and where you can listen.

There is a blood test now. FDA-cleared. A blood draw, the same tube they already fill at your annual physical. Everything Sandy didn’t have, collapsed into one vial.

Almost nobody can get it. Medicare won’t cover it as screening, and commercial insurance isn’t required to cover it at all.

What happened to Sandy was a limitation of her time. What happens to the next fifty-plus-year-old is a decision.

So if you take one thing from me this week: go ask. At your next physical, ask about cognitive screening and biomarker testing. Ask what you qualify for and what your plan covers. If it runs in your family, say so out loud in the exam room.

You may not like the answer. But you can’t act on information you never went to get.

I’ve been trying to figure out the best way to end this for an hour and I don’t have a clean ending, which feels about right. The ending itself was not clean. Are they ever?

Sandy was a huge part of my life for more than forty years. Forty-seven to be exact. She loved me as if I were her daughter and I loved her. She made a room better. She had the type of energy that could change a room just by walking into it. I always used to tell her how much I admired that. She had a refreshingly honest personality that people gravitated towards. I will miss her and all the cats. The one in the bottom right corner of this picture was one of my all time favorites, his name was Dennis.

She would have hated all this fuss and then secretly loved it.

Sandy, I will think of you every day. I can’t wait to see you and Daddy again at the cul-de-sac in the sky — along with Dennis, Wizard, Raylan and, of course, Boomer Son of Ragtime.

When I called my mother to record her interview for this episode, the first thing she did was turn her music down. Then she told me about the red dot.

She’d been to the dermatologist three months earlier. Clean checkup. My mother has gone every six months for twenty years — she’s a retired dentist, she does not miss appointments. And three months after that clean checkup, she noticed a little pinpoint spot on the right side of her nose. A pin dot. A little red place that looked like nothing. She watched it for three or four weeks. It didn’t go away. So she made the appointment herself.

The cream her dermatologist prescribed did nothing. The biopsy told them what it was: basal cell carcinoma. She had Mohs surgery, and that was that.

Her dermatologist didn’t miss anything. There was nothing to see three months earlier. That’s how this cancer works — it wasn’t there, and then it was, and the person best positioned to notice was the woman looking at her own face every morning. My mother says it plainly: pay attention to your own body. It’s the most practical sentence in the entire episode, and she’s been proven right twice now.

Skin cancer is not a stranger in my family. My mother’s had two. My step-dad has had several. If you grew up in Texas in the era before anyone said the word sunscreen, this is what the math looks like forty years later. Five million new cases of basal cell carcinoma in this country every year. It is the most common cancer in the world. Most of us know someone who’s had one, which is exactly why we’ve all learned to shrug at it. It’s just basal cell. It’s just skin cancer.

Making this episode taught me to stop saying “just.”

When my mother had her first Mohs surgery in 2014, it was scheduled within a week. Today, that same surgery is often booked ten to fourteen weeks out. There are only about five thousand surgeons trained to do it, they can perform roughly a million procedures a year, and there are five million new cases annually. The cancer didn’t get faster. The line got longer. If you’re waiting in it right now, “just skin cancer” doesn’t describe your spring.

Mark Smith, one of the patients in this episode, spent forty years working outdoors in Tennessee telecom. His first basal cell showed up as a spot on his cheek that bled when he shaved — no nick, no reason. Mohs handled it, but it took more tissue than he expected. So when his second one appeared on the tip of his nose, he did the arithmetic every patient in his position does: if they take that much off my nose, what will I look like? He researched his options himself and chose superficial radiation instead. Twenty treatments, twenty seconds each, three days a week. No scar. He’s glad he did it. But notice what the system asked of him — twenty appointments to protect his own face. Nobody in that story got anything easy.

And then there’s Julie.

Julie Breneiser has had about a thousand basal cell carcinomas. That’s not a typo. She has Gorlin syndrome, a rare genetic condition, and both of her adult children inherited it — her daughter was diagnosed at seven, her son at eight. Julie is a trained physician assistant, and she’ll tell you her training didn’t protect her from any of it. There’s a ritual in cancer treatment where you ring a bell when you finish. Julie’s community doesn’t get a bell. A doctor once told her directly: you will never be cancer free.

A few years ago, her community came close to something better. A topical treatment in clinical trials. Patients on it watched their basal cells go away — skin that had produced cancer their whole lives, clearing. Then the trial missed the FDA’s standard endpoint, which generally requires the drug to work at least fifty percent of the time, and it was over. Patients went from clear faces back to surgery every three to six months.

Julie made an argument on the podcast that I want more people in Washington to hear, because it’s not an emotional argument. It’s arithmetic. In a rare disease this relentless, a thirty percent reduction is enormous. She’s had a thousand cancers. A treatment that “failed” at thirty percent would have spared her three hundred surgeries. The trial called that a failure. She calls it three hundred surgeries.

So what did she do? In October of last year, she went on LinkedIn and sent a letter to the CEO of Medicus Pharma, Raza Bokhari, M.D., whose company is developing a dissolvable patch — SkinJect — for basal cell carcinoma. Four hundred microscopic needles, applied in three short office visits while you wait for your surgery date. In Phase 2 trials, three out of four treated lesions cleared on visual exam. I’ll say clearly what I said in the episode: the patch is investigational. It is not FDA-approved. Under the microscope, its complete-response rate is forty percent against an approval bar of more than fifty, and the next study will decide whether it closes that gap. Nobody can walk into a dermatologist’s office and ask for it today.

Dr. Bokhari answered Julie’s letter. They met. And there is now an orphan drug designation in motion for Gorlin syndrome — a community the original trials didn’t even include because they did not even know about them. If the science holds, a treatment could reach her community on a faster road than anyone expected. It happened because a patient wrote to a company, not the other way around.

I’ve spent years watching how this system treats patients. The honest summary is that it responds to the people who show up — the woman who books her own appointment about a red dot, the man who researches his own alternatives, the mother who writes the letter. That shouldn’t be the price of admission. But until it isn’t, I’m going to keep putting the people who paid it on the show.

Two practical things before you go. Look at your own skin this week — really look. If something new doesn’t go away in a few weeks, make the appointment. And wear sunscreen. My mother, who plays golf three days a week in Texas heat, does not step outside without it. She’s earned the right to lecture all of us.

Listen to the episode here: [EPISODE LINK]

If Gorlin syndrome touches your family, the Gorlin Syndrome Alliance. Tell them Julie sent you.

I’ve spent years in patient advocacy, and if you asked me to boil down everything I’ve learned into one sentence, it would be this: when you peel back the label of “patient” or “advocate,” there is always a person underneath.

Somebody with a job, or a family, or a garden, or a beagle they walk in the morning. Somebody who, before any of this happened, never thought about prior authorizations or step therapy or PBMs. They just lived their life. And then something happened.

That’s the whole reason I started the State of the Patient Podcast — and it’s why, for the very first episode, I didn’t want to lead with policy or a piece of legislation. I wanted to lead with people. Four advocates, four different conditions, four different corners of the country. I want to introduce you to them here, because I’m still thinking about all four of them, and I suspect I will be for a while.

Greg says “I meant to do that”

Greg Josephs is a real estate guy from New Jersey with a beagle and a garden and myasthenia gravis, which he’s had for over twenty years. It took six months and a parade of specialists to diagnose him — one told him he was crazy, one wanted to cut into his head, one guessed ALS — before a chest X-ray finally pointed to MG. “Good news,” the doctor told him. “You have MG.”

Here’s what I love about Greg. He’ll tell you MG isn’t life-shortening, it’s life-limiting — and then he’ll make you laugh about it. When he stumbles stepping off a curb, he looks around and says, “I meant to do that.” His favorite joke is a knock-knock joke. Knock knock. Who’s there? HIPAA. HIPAA who? “Can’t tell you.”

But underneath the jokes is real wisdom. Greg runs a support group built on three C’s — comfort, compassion, companionship — because when you’re newly diagnosed with something you can’t pronounce, what you need first isn’t a treatment plan. It’s somebody who’s been there. And when I asked what he wants from policymakers, he didn’t say “pass a bill.” He said he wants med students trained to sit with uncertainty and look at the whole person instead of rushing to a label. “Smiling is easy,” he told me. “And wonderful treatment.”

Michele found out a computer denied her — three times

Michele Rayes is a pharmacy tech from Texas, a cancer survivor since she was 22. She became an advocate through her job, watching PBMs squeeze her patients — and then realizing she’d been quietly getting squeezed herself. She’d been paying cash for her own medication because it was cheaper than using her insurance. Let that sink in.

Last year, the first drug ever developed for her rare condition came to market. She’d waited 30 years. Her insurer denied it. She appealed. Denied. Appealed again. Denied. Then came the letter: “You’ve exhausted all appeals.”

Most people stop there — less than one percent of denials ever get appealed at all. Michele called and asked how her appeals had been reviewed. The answer: a human eye had never looked at any of them. Every denial was AI. So she turned her story into the face of a Texas bill banning AI-only insurance denials, and she helped write the protocol. What she wants is simple, and it’s stayed with me: “I didn’t ask to be ill. Just treat me as a human. Plain and simple.”

Vickie got handed a $9,740 bill that was never hers

Vickie Wilkerson is from Louisiana — her congressman is Speaker Mike Johnson, and yes, she’s met him in his office. She’s been to DC five times for psoriasis patients. Her insurance actually approved her new biologic quickly. The problem was the specialty pharmacy, which told her the copay for a single shipment would be $9,740 — and wanted to ship it first and figure out the money later. Biologics can’t be returned. Once that box is on the way, you own it.

Vickie said no. She pushed back, got her patient assistance program to cover what it was supposed to, and got her medication. But she has to do this every three months. And here’s what keeps me up: if this happens to Vickie — a five-time DC advocate who knows exactly what a copay accumulator is — what happens to the patient who reads “$9,740” and just stops?

Michelle brings her laundry on stage

Michelle Castile is from rural Wisconsin, and her crisis didn’t start with a diagnosis. It started with her house. A government weatherization program made mistakes that wrecked her home’s air quality. It took two years and experts from all over the country to diagnose. By then her daughter had asthma, her son was always sick, and Michelle herself was disabled and nearly lost her eyesight.

When the state denied her requests for home-delivered meals and a shower door, she decided the caseworkers were simply burned out — and instead of giving up, she built a presentation about it. It’s called “Lessons Through Laundry,” and she folds laundry live on stage, because that’s what she does when she’s anxious and she refuses to hide it. Three years ago she was a stay-at-home mom who’d never spoken in public. Her advice: “There’s nowhere it can go besides up when you’re at the bottom.”

What I keep coming back to

When I lay these four stories next to each other, I keep hearing the same three things.

The system is designed to be exhausting. The denials and appeals and phone trees work because most of us, most of the time, give up. That’s the whole business model. Less than one percent of denials get appealed — not because patients are lazy, but because they’re worn down.

There is a person behind every patient. Greg was a real estate guy. Michele was a young woman with her whole life ahead of her. Vickie was a wife. Michelle was a mom folding laundry. Every one of them is more interesting than their diagnosis.

None of them did it alone. They each plugged into something bigger — a support group, a foundation, an association, a movement. That, more than any single law, is what made them effective.

So if you’re at the beginning of something right now — a new diagnosis, a denial letter, a system that just stopped working for you — take this from Greg, Michele, Vickie, and Michelle: you have to be the CEO of your own healthcare. Nobody is going to do it for you. But there are people who will help, and there are advocates who have walked the road ahead of you and left a trail.

Go listen to the full conversation with all four of them right here in Substack or in your favorite podcast app. And if one of these stories sounds like yours, hit reply — I read everything.

There’s a moment every new CEO dreads.

It’s not the first board meeting. It’s not the press scrutiny or the competitor moves. It’s the moment the CFO slides a spreadsheet across the table and says, “Here’s what this actually costs.”

That moment in healthcare is called your Explanation of Benefits. Or your hospital bill. Or the pharmacy counter, where you hand over your card and hold your breath.

Most patients get blindsided by it. CEOs of their own healthcare don’t.

Lesson 1 was inventory: building your leadership team, understanding your benefits as assets, installing a system that gives you visibility. That was the 30,000-foot view.

Lesson 2 is where we come down to earth. Hard.

This is the financial reality of American healthcare in 2026, not softened, not spun, not buried in footnotes. If you’re going to lead your care with any real authority, you need to know what you’re actually holding.

The Numbers Nobody Puts in the Brochure

Here’s what’s sitting in the fine print of the average American health plan right now:

Deductibles are climbing and they’re not stopping. The average annual deductible for employer-sponsored single coverage now sits at $1,886, up 17% over five years and 43% over ten. More than a third of American workers face deductibles of $2,000 or more before their insurance pays a single dollar of medical costs.

High-Deductible Health Plans are no longer the exception. They’re the norm. Roughly one in three covered workers is enrolled in one. In 2026, HSA-eligible plans require minimum deductibles of $1,700 for individuals and $3,400 for families, and many run significantly higher. Out-of-pocket maximums for HDHPs cap at $8,500 per individual and $17,000 per family. ACA plans can reach $10,600 and $21,200, respectively.

Read those numbers again. That is your maximum legal financial exposure in a single calendar year. For many families, that’s a car. A semester of college. A down payment.

And for a typical family of four? Between premiums and out-of-pocket spending, the bill now runs into the tens of thousands annually. Workers contribute an average of $6,850 toward family premiums alone, before a single claim is filed.

When “Healthy Enough” Stops Being a Strategy

High-deductible plans carry a quiet, seductive logic: Stay healthy, pay less. And for a time, it works. Low utilization means low exposure. The math looks fine.

Then it doesn’t.

A cancer diagnosis. A difficult pregnancy. A car accident on a Tuesday afternoon. A child’s unexpected hospitalization. Suddenly you’re not talking about a $200 copay. You’re talking about deductibles that hit their ceiling in the first month of treatment, coinsurance that kicks in and keeps climbing, and out-of-pocket maximums that represent a financial emergency for families who never saw it coming.

Studies consistently show that when out-of-pocket burdens spike, sometimes by $2,000 or more for serious diagnoses, patients delay care. They skip prescriptions. They make financial decisions that are actually medical decisions in disguise.

That is not a healthcare system. That is a system that makes you bet against your own body.

A Word on HSAs: The Tool and the Trap

Health Savings Accounts are real, and their advantages are real. The triple tax benefit, where contributions go in pre-tax, grow tax-free, and come out tax-free for qualified expenses, is one of the most powerful savings vehicles in the American tax code. Employer contributions averaging $600 to $1,000 per year sweeten the deal further.

But here is what the brochures don’t say: HSAs are not a solution. They’re a pressure valve.

Lower-income workers and high-needs families, the people most exposed to medical costs, are often the least able to max-fund an HSA. The tax advantages, by design, benefit higher earners most. And while an HSA gives your savings portability, your coverage still follows your employer.

Which brings us to the bigger issue, the one hiding beneath every deductible conversation.

The Structural Problem No One Wants to Name

The real threat to your healthcare sovereignty isn’t the deductible itself.

It’s the fact that your healthcare is tethered to your job.

Change employers. Get laid off. Reduce your hours. Take a career break to care for an aging parent or a newborn. In each of those moments, moments that define the actual texture of a human life, your coverage resets. Your deductible resets. Your care continuity gets disrupted. The relationships you built with your physicians, your specialists, your pharmacies, suddenly imperiled by an HR decision.

That is not ownership. That is dependency.

True ownership, the kind a CEO exercises, means pushing for coverage that travels with you. That serves your life trajectory, not your employer’s quarterly plan. This is the policy conversation patients need to be leading: individual portability, true price competition, and a market that actually answers to you.

Your CFO Checklist: Lesson 2 Action Steps

Every board meeting ends with action items. Here are yours.

1. Calculate your real worst-case number. Deductible plus coinsurance up to your out-of-pocket maximum plus annual premiums. Write it down. That is your true exposure in any given year. Most people have never done this calculation. Do it today.

2. Treat your HSA or FSA like a health emergency fund. If you’re eligible, fund it aggressively, not as an afterthought but as a strategic priority. Max it when you can. The money rolls over. Time makes it powerful.

3. Stop paying retail for healthcare. Price transparency tools exist, and increasingly, your insurer is handing them to you directly. Most major carriers now offer apps that let you search for in-network physicians, compare estimated costs for procedures, and find care before you need it in a crisis. Download yours. Use it before you need it, not during one.

Beyond the app, remember that in-network providers matter enormously to your final bill. Cash-pay discounts are offered by many providers but rarely advertised, and they can sometimes beat your insured rate. You are allowed to ask what something costs before you agree to it. You are allowed to negotiate. These are not radical acts. They are what informed consumers do in every other market, and healthcare is slowly, reluctantly, being forced to catch up.

4. Advocate beyond your own plan. This lesson isn’t just personal, it’s political. Support reforms that create individual ownership, genuine portability, and real price competition. Your voice as an informed patient carries more weight than you think.

5. Treat open enrollment like a board meeting. Because it is one. Review every year. Your life changed. Your health needs changed. Your plan should reflect both.

The Bigger Picture

Out-of-pocket costs are not a bug in the American healthcare system.

For many of the stakeholders involved, they are a feature, a mechanism that shifts financial risk from insurers to patients, year after year, in amounts that creep up just slowly enough that most people don’t notice until they’re already in crisis.

Noticing before the crisis is what this series is about.

In Lesson 3, we move from the financial architecture to the human infrastructure: the specialists, the systems, and the moments where coordination either saves you or fails you. We’ll go inside the gaps that swallow patients whole and look at exactly how a CEO of their own healthcare learns to close them.

Because the goal was never just to survive the system.

It was always to lead it.

What’s your biggest out-of-pocket surprise, or win, this year? Drop it in the comments. The most powerful thing we can build here isn’t just smarter patients. It’s an honest record of what this system actually costs real people. Let’s build that together.

We spend endless energy complaining about the broken healthcare system in America.

Fair enough. It is broken in many ways.

But here’s the uncomfortable truth most people avoid:

Before you can effectively challenge or change the system, you first have to understand how you’re currently operating inside it.

And the vast majority of patients don’t.

They don’t know what their insurance actually covers.
They don’t know what tools, benefits, or programs are sitting unused in their plan.
They lack a single physician who truly owns the big picture of their care.

In other words, they’re running a high-stakes, multi-million-dollar personal enterprise—completely blind.

That is not how a CEO operates.

If you want to step into the role of CEO of your own healthcare, this is where it begins. Not with outrage. Not with policy battles. Not with trying to fix everyone else.

It begins with inventory.

1. Build Your Leadership Team

Every successful CEO has a strong leadership team. In healthcare, that team starts with one critical role: your point person—the physician who owns the 30,000-foot view of your health.

This isn’t just “whoever you listed on your insurance form.” This is the doctor who connects the dots when things get confusing, who catches what falls through the cracks, and who coordinates care across specialists.

Who that person is depends on your life stage and health reality:

• If you’re generally healthy, it’s likely your primary care physician.

• If you’ve faced cancer or a serious chronic condition, it may be your oncologist or specialist.

• If you’re managing care for a child, it’s your pediatrician.

• For many women, it’s a trusted gynecologist who knows their full history.

This individual is your hub. Your first call. Your strategic partner.

A true CEO knows exactly who sits in that seat, has their direct contact information, and knows how to get timely answers. Most patients have neither.

2. Know What You Actually Own

Your health insurance is not just another monthly bill. It is one of the most valuable assets you possess.

Yet most people treat it like an afterthought—something that “happens to them.” CEOs treat benefits as capital to be understood, leveraged, and protected.

When you don’t know what’s covered, predictable things happen:
You skip preventive screenings that are 100% paid for.
You miss wellness programs designed to keep you healthier.
You pay out-of-pocket for services that were already included.

This isn’t poor decision-making. It’s operating without the full balance sheet.

The shift is simple but profound:
Stop viewing your plan as passive coverage. Start treating it as an asset you actively manage.

Read the summary of benefits. Understand the network. Know your preventive care entitlements cold. The knowledge alone can save you thousands—and more importantly, protect your health.

3. Install Your Operating System

No serious CEO runs a complex organization with scattered notes, random logins, and sticky notes. Healthcare demands the same discipline.

Most patients operate in chaos: paper printouts from different offices, half a dozen patient portals, mismatched bills, and medical records scattered across providers like puzzle pieces with no box.

The system itself is not built to maintain a clean, centralized record for you. That quiet responsibility falls on the patient.

You don’t need a perfect, enterprise-grade solution. You need a functional operating system:

• Download and actually use the apps from your insurance carrier and major providers.

• Consolidate records where possible (many systems now allow you to request full records and upload them centrally).

• Track visits, prescriptions, lab results, and bills in one place.

When you have visibility, you gain control. When you have control, you stop being a passenger and start steering.

This Is Where Leadership Begins

This isn’t the glamorous part of healthcare—no miracle drug, no viral outrage post, no dramatic policy fight.

It’s quieter. More foundational.

But everything else rests on it.

Once you have a clear point person, a deep understanding of your benefits as assets, and a working system to track your information, you stop merely reacting to the healthcare system.

You begin to lead it.

And that single shift changes everything.

What Comes Next

In the coming weeks, we’ll go deeper with real experts who live this world every day:

• A plan benefit designer who architects the very insurance plans most of us use — and will reveal what’s actually negotiable and how to maximize what you’re already paying for.

• A primary care doctor on the front lines who sees what happens when patients take ownership versus when they don’t.

• Professionals who organize health records for a living — the people who turn scattered chaos into clean, actionable systems that actually work.

In Lesson 2, we move into territory most patients deliberately avoid:

What healthcare actually costs — and how to think clearly about spending your own money in a system deliberately designed to obscure those costs.

Because becoming the CEO of your healthcare isn’t just about gaining access.

It’s about mastering decision-making under uncertainty.

Join the Community and Take the Next Step

If today’s lesson resonates and you’re ready to move from reading to real action, I invite you to join our growing community at Patients Rising.

We’re building a national network of patient advocates who are committed to becoming their own best advocates — and ultimately learning to advocate effectively for others, whether it’s their family members or broader healthcare policy issues.

At Patients Rising we teach you how to do both.

Come join us.

Right now, you can take the Be Your Own Best Advocate Course — completely free.

It’s the perfect companion to this series, giving you practical tools, step-by-step guidance, and a supportive community of people walking the same path.

[Join the Patients Rising Community]

That day, I took my stepmother to visit the assisted living facility where she and my father were about to move. The facility was only five miles from our home in Northern Virginia. For the first time since I was nine, my dad was finally going to live near me. I was excited to be able to help take care of him in this season. I already had my mother-in-law living with us, and my stepmom needed specialized support.

I look back on it now and realize what a privilege it was to be able to care for aging parents. If you happen to be in this season, oh I know how hard it is. I am right there with you. Just remember, in this season the days are long and days are limited. Hindsight is always 20/20. You will look back and second-guess decisions, but try to savor the moments.

The assisted living facility held a St. Patrick’s Day celebration for residents on that Friday the 13th of March. I should have known to pause given everything unfolding in the world, but instead we celebrated her move. She was ready to move to Virginia. She was smiling, glass of wine in hand, and ready to make new friends and start her new life. There is a picture of her from that day, full of life, toasting her new tomorrows …

Four days later, everything changed.

On March 14, I received a frantic call from the assisted living facility telling me I had to get them moved in by March 17 or they would not be allowed in at all. There was no time and no real plan, only a hard deadline. My father was still in Denver with a broken leg. He was on dialysis and living with type 1 diabetes plus more health complications than anyone should have to bear. My stepmother’s Alzheimer’s had already advanced to the point where they could no longer care for each other.

There was no choice. I scrambled, called everyone I could, bought what we needed, coordinated flights, and somehow made it happen. My dad arrived on March 17, 2020. First I took them to my home, fed my dad, and let him see the boys. Then I watched them walk into the facility. I never saw my stepmom again until almost a month later.

They were placed in isolation because they had come from out of state. They were not even in the room we had chosen for them. My father was miserable. He hated the masks, the institutional (and very cold) food, the disorientation, and the feeling of being completely cut off from everything familiar. The only times I could see him were during his dialysis appointments three times a week. He also managed to come up with other appointments he needed just to escape the fresh hell he felt he was living in.

No one figured out how to fully quarantine a dialysis patient—or my dad—during COVID, and for that I will always be grateful. Had I not had to pick him up and take him to dialysis, I would have never seen him again when he went in on March 17th.

In those final weeks, I broke every rule you could possibly imagine. I brought him to see my kids whenever possible, even when it was not allowed, even when policy said it was not safe. Those stolen moments mattered more than any regulation. Policy could not understand what we were living through, but I could. I saw how frail he was. I knew my time with him was limited, even if I did not want to fully admit it.

My father died on April 11, 2020, just three and a half weeks after we had gotten him there. He did not die from COVID. He died from everything else his body had been carrying for years—diabetes, heart disease, kidney cancer, a broken leg. Ten months later, on February 11, 2021, he was interred at Arlington National Cemetery.

By then, my stepmother was already so far gone with Alzheimer’s that she brought a date from the facility to the funeral. When we arrived to pick her up, he got into the limo, walker and all, and proceeded to ride with the family. He was a nice fellow, but he did not belong at my dad’s funeral. At this point, I had not been able to see her in person in quite some time because of the lockdowns. Alzheimer’s had made her uninhibited, and honestly hard to be around. It gutted me inside. I knew my stepmom was in there somewhere, but I was having trouble finding her.

As the disease progressed, in her mind my father had not died. He had simply left her for another woman. When I tried to explain that he was gone, she looked at me with confusion, searching for a truth she could no longer hold onto. That was the moment I truly understood what Alzheimer’s takes from a person and from a family.

Eventually she had to be moved to Memory Care. And there she was truly alone. That was when I met Alzheimer’s not as an abstract idea or a clinical diagnosis, but as a daily reality. There is nothing worse than watching someone you love slowly disappear while they sit right in front of you. You begin to understand why some families eventually stop visiting. It is not because they do not care. It is because every visit becomes a fresh reminder of what is being lost, piece by piece. As I struggled—and still struggle—I found a great deal of grace for everyone going through this.

Despite the assisted living facility, I was still responsible for everything: her clothes, her dental care, her schedule, and her affairs. It felt like suddenly having a third child on top of my own kids, my home, my work, and the unrelenting chaos of a global pandemic. Even in a good facility, you remain the primary caregiver. You have to watch everything. Clothes disappear. Small details slip through the cracks. Dignity erodes in quiet ways. You are always on.

My stepmother had something rare: long-term care insurance of the kind that barely exists for new buyers anymore. This would be a different story without it. In 2025, her care costs $143,000 a year. Every month the transfer arrives, and every month I turn around and pay the bill. It has been an extraordinary gift, yet it remains completely out of reach for most American families.

Even when you manage the daily caregiving and somehow shoulder the crushing costs, you eventually hit another wall: access to meaningful treatment. Unfortunately, there are only disease management treatments available for my stepmom at this stage.

Today, patients with early-stage Alzheimer’s are being denied coverage for FDA-approved treatments not because the science is lacking, but because of policy. The Coverage with Evidence Development program treats these approved drugs as if they are still experimental. That signal does not stay contained. Private insurers follow Medicare’s lead, denying claims and labeling the therapies investigational. At the same time, even getting a diagnosis has grown more difficult with more prior authorizations, more delays, and more barriers. All of it steals time, and with Alzheimer’s, time is everything.

There is some hopeful movement in Congress. Last November, Representatives Vern Buchanan and Paul Tonko introduced the bipartisan Alzheimer’s Screening and Prevention (ASAP) Act. The bill would modernize Medicare coverage for preventive services by authorizing immediate coverage of FDA-approved blood-based biomarker tests for early detection of Alzheimer’s and related dementias. It aims to cut through the multi-year delays that currently leave families waiting too long for answers. Early detection cannot turn back the clock for my stepmom, but it could give so many other families more time to plan, pursue treatments, and explore clinical trials before the disease takes hold.

My stepmom is on hospice now. Not because she is dying tomorrow, but because Medicare will fully cover more of what she needs at this stage of the disease. There will be no heroics, and honestly, she would not want them. She is locked inside herself somewhere, unable to get out. Today when I visit, she looks right through me.

One of the things I am going to talk about a lot on here is becoming the CEO of your own healthcare. Sometimes we have to step into that role for the people we love. In this case, my stepmom did one thing right while she was still fully herself.

Her mother died from Alzheimer’s. She saw the writing on the wall early and took steps to plan. While she was still working, she secured long-term care insurance that has made an enormous difference in an otherwise heartbreaking journey. Most families do not have that kind of protection.

Patients do not experience policy. They experience the consequences of it. Both the good and the bad.

Alzheimer’s is already a long goodbye. We should not be shortening the time people have or delaying access to care simply because policy fails to understand what families are actually living through.

Have the conversation you have been avoiding. Ask your parents whether they have long-term care insurance, where their financial documents are, and what the plan is if they can no longer live independently. If you do not ask now, you will be forced to figure it out later in the middle of a crisis.

Build a dedicated healthcare safety net, whether through a Health Savings Account, long-term care insurance, or a separate savings strategy. You need money set aside specifically for health and care, because traditional insurance will not cover what you think it will. Medicare will basically cover everything once you go into hospice. Do not be forced to make that choice before you are ready.

Plan for time as well as money. Everyone plans for costs, but almost no one plans for who will manage the care, coordinate the appointments, or advocate when things go wrong. Caregiving is a full-time job. Decide now who will carry that responsibility.

Make a plan. Have the conversation. I will never stop replaying the tape in my mind of all the things I wish I had known, considered, and done. No matter who you are caring for, the truth is it’s hard to plan for something you hope you never have to live through, but even small steps and discussions can make a huge difference for you and your family.

If you are looking for deeper guidance, these five books have helped me personally navigate the practical, emotional, and planning realities of caring for aging parents and preparing for long-term care needs:

• The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins — Often called the “bible” for dementia caregivers, this comprehensive guide offers practical strategies for every stage of the disease, from managing daily challenges to self-care for the caregiver.

• How to Care for Aging Parents by Virginia Morris — A thorough handbook that covers the full spectrum of elder care, including financial and legal planning, long-term care options, and difficult conversations about independence and future needs.

• Creating Moments of Joy Along the Alzheimer’s Journey by Jolene Brackey — This uplifting resource focuses on practical ways to bring connection, dignity, and small joys into caregiving, helping families shift from loss to meaningful presence.

• Being Mortal: Medicine and What Matters in the End by Atul Gawande — A thoughtful exploration of aging, serious illness, and end-of-life care that encourages honest planning and prioritizing quality of life over mere medical intervention.

• A Bittersweet Season: Caring for Our Aging Parents—and Ourselves by Jane Gross — A candid memoir and guide drawn from the author’s own experience, blending personal stories with practical advice on the emotional and logistical sides of caring for aging parents.

These books do not replace professional advice, but they can provide comfort, tools, and perspective as you build your own plan.

He spent an entire morning on the phone with eight different organizations. Fake phone numbers. Bounced emails. Placeholder help desks that spit out 111-111-1111. Reps who couldn’t even get him logged in to see the patient.

This wasn’t a glitch. This is the Medicaid mental health “network” working exactly as designed.

And here’s the part that should make every taxpayer furious: even if that therapist had somehow fought through the ghost network and started seeing her, UnitedHealth was already queued up with its next move.

According to a ProPublica investigation, UnitedHealth (through Optum) rolled out internal algorithms specifically targeting outpatient mental health care in its Medicaid plans. The system flagged patients for “overutilization” — things like more than 30 therapy sessions in eight months or twice-a-week visits. The same company that settled with California, New York, and Massachusetts regulators for illegally applying stricter rules to mental health than to physical health kept running these reviews anyway. They did it in Medicaid plans serving the poorest and most vulnerable patients in roughly two dozen states.

Taxpayers are footing the bill for these plans. Government money is supposed to treat people in the middle of a real mental health crisis. Instead, we get a two-layered scam:

• Contractors who build fake networks so providers can’t even get in the door.

• Insurers who let providers in… then override doctors to cut off the care.

This isn’t “managing costs.” This is laundering taxpayer dollars through phantom networks and phantom care while real patients get nothing.

Medicaid serves the populations with the highest mental health needs — not luxury cases. Here’s how prevalence compares across major groups (primarily nonelderly adults where data allows direct comparison, sourced from KFF/NSDUH and VA reports):

• Medicaid (non-elderly adults): 35% any mental illness, 10% serious mental illness

• Veterans (using VA care): ~31% with a confirmed mental health diagnosis; PTSD rates 15–23% (much higher among combat veterans)

• Medicare (disabled/SSDI-eligible, non-elderly): Rates often approach or overlap with Medicaid levels due to disability; overall Medicare (mostly 65+) is lower at ~11% any mental illness for seniors

• Private insurance (non-elderly adults): ~20–25% any mental illness, ~4–6% serious mental illness

These numbers explain why the system’s barriers hit hardest here. Medicaid (and overlapping veteran/disabled populations) covers the exact groups taxpayers fund to support — trauma, poverty, service-related conditions, and serious impairment — yet the barriers block both entry and continuation of care.

Enough. Here’s what actual policy fixes look like. Not slogans, not “just stop it,” but concrete changes that would force real care:

1. Verifiable networks or no contract. Mandate real-time, audited provider directories. If fewer than 80% of listed mental health providers are actually reachable, accepting new patients, and properly credentialed, the managed-care organization loses the Medicaid contract in that region and pays daily fines until fixed. No more ghost networks.

2. One working enrollment portal. Kill the eight-contractor runaround. Require a single, functional, state- or federally-run credentialing system for Medicaid mental health providers. If a licensed therapist wants to treat a patient, they should be able to log in and start in days — not weeks of dead-end calls.

3. True parity enforcement with teeth. Mental health reviews must use the exact same medical-necessity standards and algorithms applied to physical health conditions. No special “outlier management” programs that only target therapy. Violations trigger automatic repayment of denied claims plus treble damages to the state.

4. Payment tied to actual treatment delivered. Stop the per-member-per-month gravy train that rewards insurers for enrolling people they never intend to treat. Shift a meaningful chunk of payment to fee-for-service for delivered care, with public dashboards showing utilization rates, denial rates, and network adequacy scores. Make the data impossible to hide.

5. Claw back the waste and phantom payments. Independent third-party audits of networks and “phantom enrollees.” Any dollars paid for care that never happened get recovered — with interest — and go straight back into expanding real provider capacity.

Pro-Tip: Become the CEO of Your Own Healthcare — What You Can Do Right Now as a Medicaid Patient

You can’t fix the whole system today, but you can stop being a passive passenger. Here’s how to push back on ghost networks, therapy cut-offs, and insurer overrides:

• Verify providers yourself — Never trust the online directory alone. Call (or have a friend/family call) every listed therapist before your appointment. Ask: “Do you currently accept new Medicaid patients from [your specific plan]?” Document the date, time, and name of the person you spoke with. If it’s a dead end, report it immediately to your state Medicaid agency as this creates a paper trail that regulators actually use.

• Document everything — Keep a simple log of every call, email, denial letter, and conversation. Note dates, names, and what was said. When a session limit or “over-utilization” flag hits, ask your therapist to write a detailed letter explaining medical necessity and comparing it to how physical health conditions (like physical therapy) are handled. This strengthens appeals.

• Appeal denials aggressively — You have the right to appeal under federal mental health parity laws. File quickly (deadlines are short). Use the denial reason to argue it treats mental health worse than medical/surgical care. Many appeals succeed on the second or third round, especially with provider support. Contact your state Medicaid ombudsman or consumer advocate office for free help navigating this.

• Escalate when needed — If the plan stonewalls you, file a complaint with your state Medicaid agency (find it via medicaiddirectors.org). For parity violations, also report to the federal Parity Complaint Registry or your state insurance department. Persistence + documentation often forces movement.

• Explore every door — Ask about telehealth options, community mental health centers, or sliding-scale providers while you fight the system. If you’re a veteran or dually eligible, check VA or other overlapping benefits.

You are the CEO of your care. The system is designed to wear you down. Don’t let it. Document, verify, appeal, and escalate. Every paper trail you build helps expose the BS and pressures change.

The mental health crisis isn’t abstract. The people stuck in Medicaid — and overlapping high-need groups like veterans and disabled Medicare beneficiaries — are often the ones hit hardest by trauma, poverty, service-related conditions, and lack of access. They don’t need more studies, more reports, or more settlements that change nothing. They need a system that actually connects a therapist to a patient and then gets out of the way so treatment can happen.

Right now, UnitedHealth and the rest of the managed-care middlemen are collecting billions in taxpayer money while building barriers on both sides of the exam room. That’s not oversight. That’s something we should no longer be tolerating.

It’s time we stop paying for the barriers and start demanding the care.

I’ll admit it right up front: when Peter Girnus’s viral piece “The Price Is Correct” started making the rounds, it got me. Not for a second but for longer than I’d like to admit.

It read like someone inside the system had finally decided to say the quiet part out loud. The piece walked readers through hospital chargemasters. Those are massive spreadsheets packed with sky-high list prices hospitals have been raising year over year for decades. It described them as deliberately inflated anchors, set high so insurers could negotiate what looked like generous “discounts” while hospitals still protected healthy margins.

A saline flush that costs pennies listed at $87. A cancer drug like Keytruda, acquired for around $11,000, bumped up to $40,000 or more in one facility. Same service, wildly different prices depending on who was paying or whether anyone was negotiating at all.

It was sharp, detailed, and disturbingly convincing.

And it wasn’t literally real.
Or maybe more accurately, it was not entirely fictional.

What made it land so hard is that it reflected a version of reality many of us already recognize from our own lives. I certainly did.

I grew up hearing about this exact dynamic at my own kitchen table. My dad was the CFO of a nonprofit hospital in Denver at a time when CFOs of hospitals could have an ashtray on their desk and a liquor cabinet in the office.

No, I’m not kidding. It was the 80’s.

He used to joke about the chargemaster all the time. He knew what a farce it was. He knew that no one actually paid those inflated list prices except the people who walked in off the street with no insurance and no one to negotiate for them. He also knew that most of those bills would never be paid in full. No one was really expected to pay $60 for an aspirin… except the person who had no negotiator at all.

Even back then, the “$60 aspirin” wasn’t really a joke it was a marker. I learned and understood what the chargemaster was: a necessary starting point in a complicated world of contracts and negotiations. And he also made it very clear to me — without a doubt — that those numbers had literally nothing to do with the care they were providing.

So when I read Girnus’s satire, it didn’t feel outrageous. It felt familiar.

Even if the piece exaggerated for effect, the core idea holds: the chargemaster is not a reflection of what care truly costs. It’s a negotiating tool. Hospitals set high “list” prices. Insurers negotiate them down. The whole system runs on leverage, not transparency.

But here’s the part that doesn’t get talked about enough: those prices don’t just sit on a spreadsheet. Someone eventually gets billed for them.

If you have good insurance, you have a powerful negotiator on your side. If you don’t — or if your plan decides a particular service “doesn’t count” — you’re suddenly exposed to a version of pricing that was never meant to be paid in full.

When my twins were born, the chargemaster bill for delivery and a seven-day NICU stay came to $250,000. Our insurance paid a fraction of that. We paid about $6,500 out of pocket. If we hadn’t had insurance? That $250,000 number wouldn’t have been theoretical. It would have been the number on the bill we were expected to pay.

As much as I spend time calling out insurers — and I do — this is the moment where the truth gets uncomfortable. When you walk into a hospital, you want someone negotiating on your behalf. You won’t hear me praise our current insurance conglomerates that often, but your need for them is real when you are exposed to the chargemaster rates all alone.

The people most exposed to chargemaster pricing are the ones with the least leverage: the uninsured, the under-insured, and the people whose care falls outside what a plan decides is “eligible.” They’re not just navigating the system. They’re absorbing its worst assumptions.

Transparency was supposed to fix some of this. In 2021, hospitals were required to publish their chargemaster rates, negotiated rates, and cash prices in machine-readable files. In theory, it was a big step forward. In practice, it’s mostly been a checkbox exercise, though more accountability measures have been passing at the state level recently thanks to PatientRightsAdvocate.org.

Hospitals post massive spreadsheets. Literally thousands of rows of technical codes with little context or translation. They’re technically compliant, but practically useless. And in many parts of the country, Certificate of Need laws (more to come on those) limit competition so severely that even if you could somehow decode the file, there often isn’t anyone else in town to negotiate with anyway.

Transparency without usability isn’t transparency. It’s just exposure without power.

A lot of important work has been done exposing these gaps, but for patients and families, we still have a long way to go. Disclosing the prices is one thing. Teaching people how to actually use them — how to read the file, compare options, and negotiate on their own behalf — will take time. It’s not that patients can’t understand it. They can. But for most of us, healthcare isn’t something we study until life forces the lesson.

Understanding usually arrives only after the bill does.

I’ve seen this play out in my own family in ways that still sting. After three surgeries for a cholesteatoma, my 12-year-old son needed a hearing aid. The doctor was clear: without it, school, conversations, even baseball would stay a struggle. We bought the device for $3,000.

Our insurance — after more than $25,000 a year in premiums — decided the entire expense didn’t count. Not toward the deductible. Not toward the out-of-pocket maximum. Not toward anything. In the eyes of the system, his ability to hear clearly simply didn’t exist.

We were fortunate. We had saved in our HSA and paid it without going into debt. But most families don’t have that cushion. And that’s where this system quietly does its damage — not always in one catastrophic bill, but in the steady accumulation of decisions: delay it, skip it, put it on a credit card, hope it doesn’t get worse.

This is why I keep coming back to one central idea in State of the Patient:

You are the CEO of your own healthcare — whether you like it or not.

Not because that’s how it should be. Because that’s how it is. No one is stepping in to simplify this for you — not the hospital, not the insurer, not your representatives, not your employer, and not your government.

Being the CEO doesn’t mean mastering billing codes. It means showing up differently: asking for the cash price before assuming insurance is your best option, requesting itemized bills and questioning what doesn’t make sense, understanding that “list price” is often just the opening move, and building whatever financial buffers you can — because the system quietly rewards preparation and punishes surprise.

It’s not fair. But ignoring it doesn’t make it go away.

That fake CEO confession went viral because it captured something people feel but don’t always know how to explain. The numbers looked absurd. But the structure behind them? That’s very real.

Our job now isn’t to argue about whether the satire was perfectly accurate. It’s to make sure more people understand what’s actually happening and how to navigate it.

Because once you see it, you can’t unsee it.

At Patients Rising, this is exactly what we’re trying to do: turn confusion into clarity, and frustration into action. Because the system may run on spreadsheets, but the heart of healthcare is local and real change starts around your kitchen table in the communities where you live.

Have you ever been hit with a bill that made no sense? Or had care denied because it didn’t “count”? Tell me in the comments or head on over to Patients Rising and share your story or join our community. I read every story and they matter more than any spreadsheet ever will.

If this resonated with you, subscribe to State of the Patient and share it with friends. We’re just getting started.

But it is different when it is your own child.

My 12-year-old son has lost 75 percent of the hearing in his left ear because of a cholesteatoma. He has already been through three surgeries. At one point, his doctor told us it was one of the peskiest cases he had ever seen.

After the most recent surgery failed to repair the damage, the path forward was clear. My son needed a hearing aid. Without it, he would continue to struggle to hear clearly in school, in conversations, on the baseball field, and in everyday life.

So we did what any parent would do. We got him a hearing aid. Seems like a simple process. A kid needs a hearing aide, insurance should cover something, right?

Wrong.

First, we waited several weeks for the insurance company to even tell the audiologist it was not covered. I was not surprised.

Second, we had a consult and got the sticker shock. It cost $5000-$7000 thousand for a set of hearing aides. The silver lining was he only needed one hearing aide so, after finding the right one for our son we were on the hook for one hearing aide at the rock bottom price of $3000.

Even though my husband and his employer pay more than twenty-five thousand dollars a year in premiums. Not one dollar was covered by our insurance company, Aetna.

And here is the part that still gets me: not one single dollar of that three thousand dollars counted towards our annual deductible. It did not count toward our eighteen-thousand-dollar out-of-pocket maximum.

According to Aetna, that $3000 was not a healthcare expense at all.

Tell that to my son whose face lit up when he started really hearing out of that ear for the first time. Those of us who have full hearing do not realize the amount of work our ears do together. I cried watching him.

We were fortunate. We have a Health Savings Account. We have been disciplined about setting aside a little money each month into the account. That HSA is the only reason we were able to afford the hearing aid without going into debt.

Without it, this would have been a very different story.

And that is the part I cannot stop thinking about.

Because in our case, the care my son needed was real. It was prescribed. It was necessary. And yet, in the eyes of our insurance, it was as if it did not exist at all. My son’s hearing simply did not matter to Aetna.

Moments like this are a hard reminder of something I say often: if you are not acting as the CEO of your own health care (or your family’s), no one else is going to step in and do it for you.

So what happens when you do not have a fallback?

What happens if that $3,000 hearing aid goes on a credit card at 29.99% interest?

That is the reality for a lot of families. And in that moment, neither the credit card company nor the insurance company is asking whether the expense was necessary. They are not asking whether a doctor prescribed it. They are certainly not asking what it means for your child’s future.

At Patients Rising, we have been digging into this through our Medical Bankruptcy in America series. And the more I look at these cases, the more convinced I am that a significant portion of what shows up as “credit card debt” started exactly like this—healthcare expenses that insurers decided, often arbitrarily, did not count as healthcare at all.

You can spend thousands on care your doctor says is necessary. But if the insurance company decides it is not covered, it does not move you any closer to your deductible. You are on your own.

And this is exactly why so many Americans are frustrated, exhausted, and done with the system as it exists today.

Recently, a national survey put numbers behind what so many of us already feel.

In February 2026, Public Opinion Strategies released the “Fund the Patient” survey of one thousand registered voters. The results were not surprising to anyone who has lived through a moment like ours.

Eighty percent of voters say the health care system is either in crisis or has major problems. Nearly half say it is failing their own families. Three-quarters believe it is failing most Americans.

And when people think about their biggest financial pressures, health care is right there at the top. Premiums. Deductibles. Prescription drugs. Fifty-nine percent of voters say these costs are among their top concerns when trying to make ends meet.

When asked who is responsible, voters were clear. Insurance companies rose to the top across the board. The frustration is not partisan. It is shared.

But what stood out most to me was not just the frustration. It was the clarity around what people actually want instead.

The message is simple: Fund patients, not the system.

Eighty-four percent of voters responded positively to that idea. And when you think about it, it makes perfect sense.

Because what people are really asking for is control.

Eighty-three percent said this approach is about giving individuals more choice in their health care. Eighty-one percent believe that when funding goes directly to patients—so they can choose their doctors, their treatments, and their coverage—the quality of care improves.

Only a small fraction saw it as expanding government control.

That is not what people are asking for.

They are asking for a system that actually works when their child needs to hear.

The same survey showed overwhelming support for expanding Health Savings Accounts. Nearly four in five voters view them as a good option, and more than eighty percent want broader access.

That is not theoretical to me. That is real.

Our HSA was there when our insurance was not.

At Patients Rising, we have always believed that change starts with patients. Not as a talking point, but as a reality. Patients and caregivers who understand the system, who speak up, and who turn their experiences into action.

This survey confirms what we are hearing every day. The country is ready for something different. People are tired of a system that feels designed for everyone except the person who actually needs care.

If you are reading this and thinking, “That happened to me too,” I want to hear your story.

Have you paid out of pocket for something your doctor said was necessary, only to be told it did not count? Have you fought with an insurance company over care your family needed?

Share it. Talk about it. Because the more we bring these stories into the open, the harder they are to ignore.

And if you are at a point where you want to do more than share and you want to turn that frustration into something constructive check out the organization I co-founded, Patients Rising. We are building a community of patient advocates where patients and caregivers learn how to speak up, engage, and turn that frustration into something that matters.

It is time to start funding patients over systems, but just as importantly, it is time to start listening to patients. The systems we have today are built and run by layers of bureaucracy, and too often the patient’s reality is the last thing to be heard, if it is heard at all. Real people. Real families. Real consequences. That has to change. Because when patient voices are ignored, the system drifts further away from the people it is supposed to serve. Let’s start making sure those voices are not just included, but impossible to ignore.

Disclosure: I serve as an advisor to the Fund the Patient.

If you don’t take ownership of your healthcare, no one else will. Not your doctor, not your employer, not your insurance company, not the hospital, and certainly not the government.

That doesn’t mean the people working inside those systems are uncaring. Many are dedicated professionals doing their best every single day. But the systems themselves aren’t built to carry you. They’re designed to process claims, manage costs, enforce rules, and keep operations running. When you don’t know how those systems actually work, you quickly end up reacting to decisions instead of shaping them. You become a passenger instead of the one in the driver’s seat.

I didn’t learn this from a single dramatic moment. I grew up surrounded by it. Healthcare wasn’t some abstract concept in my family. It was daily life. From hospital finance to clinical care, from caregiving to social work, I saw how the system operates from multiple angles, and how differently it looks depending on where you sit. That early exposure shaped how I see healthcare today.

My path into health policy wasn’t planned. While working as a talent executive in Los Angeles, what started as storytelling quickly evolved into something much bigger: helping patients understand and influence the policies that shape their lives.

A pivotal moment in that journey came when I met my mentor, Selma Schimmel. Selma founder of Vital Options, the first organization dedicated to young adults with cancer. She had earned a PhD in her own cancers, and she taught me more about the system than almost anyone else. Above all, she drilled into me one essential truth: no one else is going to take control of your healthcare but you and hopefully someone you trust as a caregiver when you need it.

That experience, along with everything that followed, eventually led me to co-found Patients Rising, where I’ve spent more than a decade at the intersection of patient advocacy and public policy.

During that same decade, I also stepped into the caregiver role myself. I supported aging parents, stepparents, and in-laws while raising twin boys. Between 2019 and 2025, I lost my father-in-law, my dad, and my mother-in-law. Watching how the system interacted with them as they aged — and how differently it treated them compared to younger patients — shifted my perspective in profound ways.

In America, we often talk about healthcare as something that simply “happens to us.” You get sick, you go to the doctor, you follow instructions, and you hope for the best. That passive approach may have worked reasonably well decades ago, but it no longer matches today’s reality.

Healthcare today is shaped by a vast web of policies, incentives, pricing structures, and coverage rules. Many of them decided far from any exam room. Those distant decisions quietly determine what treatments you can access, how much you’ll pay, what your insurance will actually cover, and sometimes even what options your doctor is allowed to discuss with you.

It can feel overwhelming. The good news is you don’t need to become a policy expert. But you do need to grasp one core truth:

You are the CEO of your own healthcare.

You didn’t ask for the role. It’s not always fair. But in the US healthcare system, it is the reality. Accepting it is the first step toward real control.

Being the CEO doesn’t mean you have all the answers. It means you show up differently. You ask sharper questions. You explore your options instead of accepting the first one presented. You pay close attention when something feels off. And above all, you stop assuming the system is automatically working in your best interest. Most importantly, you refuse to stay on the sidelines.

Here’s what surprises many people: The decisions that most affect your care are rarely made at the hospital bedside or in your doctor’s office. They’re made in state legislatures, federal agencies, regulatory boards, and closed-door budget negotiations. They carry technical names and acronyms that are meaningless for your average person. Drug pricing rules, coverage mandates, PBM formularies, hospital payment models, NBPP, PDUFA, PDAB, the 340B program (sounds like a tax form), and utilization management policies that can quietly restrict access.

What does it all mean to you?

On paper these issues sound abstract and bureaucratic. In reality, they become intensely personal the moment they limit the medication you need, drive up your out-of-pocket costs, force you to switch providers, or add months to your wait time for care.

If you don’t understand the forces at play, you can’t effectively respond when they touch your life. You’re left hoping someone else — somewhere — is looking out for you. Sometimes they are. Too often, they’re not.

That’s exactly why I’m launching State of the Patient.

This isn’t another space to rant about everything wrong with healthcare or to push a particular agenda. My goal is simpler and more practical: to explain what’s actually happening in health policy and why it matters to you and your family. I’ll try to keep it in plain English, without the jargon or noise.

In the weeks ahead, we’ll break down complex issues into clear, actionable insights. We’ll look at how decisions made in Washington or state capitals ripple into real life — in exam rooms, pharmacies, and kitchen tables. And we’ll focus on what you can actually do about it.

Because once you understand the system — even at a basic level — something important shifts. You stop feeling powerless. You stop being passive. You start leading your own care.

Healthcare is deeply personal. The system behind it isn’t.

And if we want a system that truly works better for the people it’s meant to serve, it has to start with something basic but powerful: more individuals who are informed, engaged, and paying attention.

This is State of the Patient. We’re just getting started, and I’m glad you’re here.

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Thanks for being here.

Yours in Advocacy,

~ Terry