The Person Behind the Patient

Host: Terry Wilcox | Featured advocates: Greg Josephs, Michele Rayes, Vickie Wilkerson, Michelle Castile | Runtime: ~30 minutes

Listen to the full episode here: [LISTEN LINK]

Opening

Hi, I’m Terry Wilcox, and this is the State of the Patient Podcast.

I’ve spent years in patient advocacy, and one of the things I’ve learned — the thing that keeps me doing this — is that 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, didn’t think about prior authorizations or step therapy or PBMs. They just lived their life.

And then something happened.

That’s the starting point for everything we do on this show. The patient. The caregiver. The person at the kitchen table trying to figure out how to pay for the medication their doctor just prescribed. That’s the perspective. It’s the only perspective we promise you.

But to get good answers, we’ll talk to anyone — and I mean anyone — who’s helping make healthcare greater. Patients. Caregivers. Doctors. Researchers. Biotech founders. Policymakers, on both sides of the aisle. Because every real innovation — whether it’s in a lab, or in how a treatment gets delivered to your front door — makes healthcare a little better than it was the day before. That’s what progress looks like.

What I believe, and what this show is built on, is that we need a system that lets free markets do what free markets do — which is innovate. In research, in delivery, in everything in between. And we need safety nets strong enough that a patient walking into a nonprofit hospital doesn’t walk back out the door into bankruptcy. Those two things are not in conflict. They have to coexist if any of this is going to work.

So that’s the show. Patients first. Anyone who can help, welcome at the table. Innovation as the engine. Affordability as the standard.

For this first episode, I wanted to start where the show starts — with the people. Four advocates. Four very different “somethings” that turned them from patients into the kind of people who show up on Capitol Hill and don’t leave until somebody’s listening. And what each of them has figured out about how to push back, push forward, and not get worn down.

Act One — Greg: “I Meant to Do That”

Greg Josephs is a guy from New Jersey. Used to sell residential real estate. Has a beagle. Likes to garden. He’s also been living with myasthenia gravis — MG — for over twenty years. If you don’t know what MG is, you’re not alone. It’s a neuromuscular condition where the signals from your nerves to your muscles get scrambled. Your brain tells your foot to step up onto a curb, and your foot doesn’t get the memo.

Greg was diagnosed in 2002. And like a lot of people with rare or complicated diseases, the road to that diagnosis was its own ordeal.

Greg: “It took about six months and bless my saint of a wife, we drove from specialist to specialist to specialist. First my dentist, who said you’re crazy. Then a neurologist who wanted to cut into my head. Another said, I have no idea. Then finally I found a neuromuscular specialist who looked at me and said, oh, I think you have ALS. But then his colleague took an x-ray of my chest, called me and said, good news, you have MG.”

Good news. You don’t have ALS. You have MG. That kind of news is its own strange country. Greg didn’t even know what MG was. What he did know was that there was a thymoma — a tumor — in his thymus gland, and that was probably driving the whole thing. Robotic surgery wasn’t really a thing yet in 2002, so a surgeon split his sternum and took it out.

And then, for about five years, Greg was in denial. He told me that himself.

Greg: “I wasn’t able to speak during the diagnosis part. So now you can’t shut me up.”

Mission accomplished, Greg.

What I love about Greg’s story isn’t the diagnosis. It’s what came after. Because MG, in his words, isn’t life-shortening. It’s life-limiting. And the difference between those two things is the entire story of so many chronic conditions in this country. You don’t die from it. You just learn, slowly, what you can and can’t do anymore. And then you figure out who you’re going to be on the other side. For Greg, a big part of who he became is — funny.

Greg: “As of late, I was at church… and a lady gave me a leaflet. I didn’t look at it till I was leaving, but she thought my staggering was because of being a drunkard. And the leaflet said, you can give up alcohol for Lent.”

He told me his favorite joke these days is a knock-knock joke. Knock knock. Who’s there? HIPAA. HIPAA who? “Can’t tell you.”

That’s not just a joke. That’s a whole worldview. Greg also runs a support group — once a month, in person and on Zoom. And he leans on what he calls the three C’s. Comfort. Compassion. Companionship. Because when you’re newly diagnosed with something you can’t pronounce and have never heard of, what you need first isn’t a treatment plan. It’s somebody who’s been there saying, you’re going to be okay, and here’s what nobody told me.

Here’s the practical thing Greg tells new patients — and I think it applies whether you have MG, or any chronic illness, or just a body that’s getting older.

Greg: “If you need to get a gallon of milk, make sure you work that into your schedule. If you’re going to take out the trash to the curb, make sure you build in some time to rest. Because unloading the dishwasher will take more time and energy than you think.”

The things we take for granted — getting the mail, emptying the dishwasher, walking to the car — for Greg, those are now whole projects. And his attitude about it is: I still do them. They just take longer. And if I stumble stepping off a curb, I look around and I say — “I meant to do that.”

When I asked Greg what he wants policymakers to understand about people like him, his answer surprised me. He didn’t go straight to legislation. He went to medical school.

Greg: “Stories are very important. But more than that, I want med students to be involved. When health professionals see an issue, they want to solve it. Sometimes that means shoot first and aim later. I would like policymakers to look at medical schools as holistic places, instead of having to diagnose right away.”

Shoot first, aim later. That’s a pretty good description of what diagnostic odysseys feel like from the patient’s side of the table. Six months of being told you’re crazy, you need brain surgery, or you have ALS — when what you actually have is a treatable autoimmune condition. Greg’s prescription — pun intended — is to train the next generation of doctors to sit with uncertainty a little longer. To look at the whole person.

And in the meantime? He’s going to keep smiling, keep gardening, keep telling his HIPAA joke. Because as he put it — “Smiling is easy. And wonderful treatment.”

Act Two — Michele: When the Computer Says No

Michele Rayes is from Texas. She was diagnosed with cancer at 22. She’ll tell you that didn’t make her an advocate, though — not at first. What made her an advocate was her job.

Michele works in the pharmaceutical world. She’s a licensed pharmacy technician. And at one point she was working in a little independent pharmacy in Texas, trying to get her patients’ medications covered. That’s where she ran face-first into something a lot of us have heard about but maybe don’t fully understand — the PBM. Pharmacy benefit manager. The middleman between you, your insurance company, and your pharmacy.

Michele: “When I changed into working in the pharmaceutical industry and working in a pharmacy, I started to see how it was affecting my patients. And I learned for the first time what a PBM was. I became passionate about PBMs to help my patients. And I think that was the trigger point for me. And then I realized for myself as a patient, some of the things I had been experiencing — like the fact that I had gone through step therapy, or the fact that I had been paying out of pocket for some of my medications because it was cheaper to pay out of pocket than to go through my insurance.”

That last part stops me every time I hear it. She had been paying cash out of pocket because it was cheaper than using her insurance. For her own medication. That’s how broken the pricing has become.

So Michele got educated. She joined the Texas Pharmacy Association’s Public Policy Council. She took our advocacy masterclass. She started showing up in legislators’ offices, learning how policy actually gets made, and figuring out how to channel anger into something useful. And then last year, something happened to her personally that turned all of that preparation into a national-level win.

Michele has a rare chronic condition on top of her cancer history. About 14 months ago, the very first drug ever developed for her condition came to market. She’d been waiting 30 years for a real treatment. Her doctor prescribed it. Her insurance denied it. She appealed. Denied. Appealed again. Denied. Until she got the letter every patient dreads.

Michele: “I had something happen to me last year as a patient where I had a medication, a new medication I was trying to get on, and I was denied and then denied and then denied. And I got a letter of, ‘you’ve exhausted all appeals.’ And I was like, no. This is not going to happen to me.”

You’ve exhausted all appeals. That’s the language. It’s designed to sound final. Most people stop there. In fact —

Michele: “Less than one percent of people who are denied, whether it be medication or an MRI or whatever, less than one percent of denials are ever appealed.”

Less than one percent. Think about that. The denial machine works because most of us, most of the time, just give up. Which is exactly what it’s designed to do. But Michele didn’t give up. She called the insurance company to ask how the appeals had been reviewed. And the answer she got changed everything.

Michele: “When I called the insurance company and asked them how this happened and some other questions, they had told me that a human eye had never looked at any of my appeals. That everything was AI denial.”

A human eye had never looked at any of it. An algorithm denied her appeal three times. Then sent her the “you’ve exhausted all appeals” letter. And here’s the kismet part — at the exact same time, a Texas legislator was trying to pass a bill banning AI-only insurance denials, and she was looking for a patient to put a face on the bill. Couldn’t find one. Until somebody set up a meeting between her and Michele on a totally different issue, and Michele mentioned what had just happened to her.

Michele: “We quickly were able to get a house hearing and they put me on the house floor and I just told what had happened… And we got it through the house floor in record time.”

Texas is now one of only a handful of states with an AI denial ban on the books. Michele helped write the protocol. Right place, right time, right patient, with three years of policy training under her belt — that’s how it happened.

I asked Michele what real change would look like for her. She said: stop treating people like line items. Stop treating each year of someone’s life like a separate financial unit. Stop denying expensive medications to seniors because they cost more than the actuary thinks the rest of their life is worth.

Michele: “I think we should value the human life as a whole, not as a number in time. That’s why I say my biggest thing would be: treat everybody on an even playing field. It shouldn’t matter what your status is. I didn’t ask to be ill. And so if I have cancer and my medication costs me a million dollars, I didn’t choose that. Just treat me as a human. Plain and simple.”

Just treat me as a human. Plain and simple. Hold that thought.

Act Three — Vickie: Nine Thousand, Seven Hundred, and Forty Dollars

Vickie Wilkerson lives in Louisiana. Her congressman, as it happens, is Speaker Mike Johnson — she’s actually met with him in his office, and she’ll tell you he’s one of the more down-to-earth lawmakers she’s sat across from. Vickie has psoriasis and psoriatic arthritis, and her advocacy journey started the way a lot of them do — with a drug that didn’t work.

Vickie: “I got put on my first biologic. And six months into it, I just thought it was going to be my wonder drug, that it was going to take care of the psoriasis and I never have to deal with it again. So six months in, it had only cleared my hands, which was crazy to me — putting injections in my stomach and it only cleared my hands.”

She told her doctor she didn’t want to stay on a drug that wasn’t working. She went home and told her husband — and this part stuck with me — she told him if he wanted out of the marriage, she’d let him out, because she didn’t know where the disease was going to go. He said no. He’d married her knowing she had psoriasis. He wasn’t going anywhere.

A few months later, Vickie called the National Psoriasis Foundation. The woman who picked up the phone happened to be standing up a new program — Community Ambassadors. She told Vickie she’d be perfect for it. That was the door in. Vickie has now been to Washington five times advocating for psoriasis patients.

But here’s the thing about being a long-time advocate. The system keeps inventing new things to advocate against. Vickie’s recent fight wasn’t with her insurance company. The insurance approved her new biologic right away. The fight was with the specialty pharmacy.

Vickie: “It was just absolutely insane because they were telling me that my copay part of getting that biologic was going to be $9,740. And I already knew about patient assistance programs. So I had already went in to sign up for the patient assistance program and was approved for it. And then the pharmacy wanted to tell me that they would have to ship it to me first — and then run that savings card, and then whatever it doesn’t cover, I would be out of pocket for.”

Let me say that number again, slowly. Nine thousand, seven hundred, and forty dollars. That’s what the specialty pharmacy was telling Vickie she’d owe — for a single shipment of a biologic. After her insurance had already approved it. With her patient assistance card already in their system. And the kicker — they wanted to ship it first and figure out the financial part later. Biologics, by the way, can’t be returned. So once that box is on its way, you own it.

Vickie: “I’m like — no, you’re not shipping that to me and putting me on the hook for $9,740. I’ve never in my life heard of a pharmacy doing that.”

What Vickie is describing — and we can’t prove this from a single phone call, but the pattern is very familiar — is what’s known as a copay accumulator, or a copay maximizer, or in some cases an alternative funding program. The mechanics vary. The result is the same: the help that was supposed to go to the patient gets siphoned somewhere it wasn’t supposed to, and the patient ends up holding a bill they were told they wouldn’t owe.

Vickie eventually got it sorted. She made the calls, she pushed back, the assistance program covered what it was supposed to cover, and she got her shipment Tuesday. By Thursday — when we talked — she was already seeing a little improvement on her elbows. But here’s her real worry.

Vickie: “Every three months — because it’s based on, I’m supposed to get it every three months — every three months I’m going to have to be fighting the specialty pharmacy to get this medication sent to me. I mean, it’s aggravating. And I’ve got other things going on in my life to have to spend hours on the phone trying to get the medication that I need. It’s just insane.”

Every three months. That’s not a healthcare system. That’s a part-time job. And before you ask — yes, this is the patient who has been to DC five times, who has met the Speaker of the House, who is well-known to the National Psoriasis Foundation. If it takes Vickie Wilkerson hours of phone calls every quarter to get her own medication, what is happening to the patient who doesn’t know what a copay accumulator is? Who doesn’t have a phone number for the manufacturer’s patient assistance program? Who reads “$9,740” on a piece of paper and just stops?

We circle back to Michele’s number. Less than one percent of denials get appealed. Most people just stop. Vickie didn’t stop. And the reason she didn’t is the same reason she went to DC five times.

Vickie: “If the doctors feel like it’s something you need to be on, then it’s something you need to be on. So it really pushed me forward in doing all this stuff.”

Act Four — Michelle: Lessons Through Laundry

Our last advocate today is Michelle Castile. She lives in rural Wisconsin. And her story is unlike any of the others you’ve heard so far — because Michelle’s healthcare crisis didn’t start with a diagnosis. It started with her house.

A government weatherization program sent workers to do energy-efficiency work on her home. They made some mistakes. The result was a building-science problem — negative air pressure, indoor air quality issues — that took Michelle two years to even get diagnosed. She had to bring in experts from all over the country to figure out what was happening to her family.

Michelle: “We had a government weatherization program come to my house, do some work… and they made some mistakes and caused some significant building science type of rare, unique issues to occur with air quality and negative air pressure and things like that. Took me two years to diagnose it. I had to get experts in here from all over the country to figure it out.”

By the time she got answers, her daughter had developed asthma. Her son was sick all the time. Michelle herself had become disabled. She nearly lost her eyesight.

After she became disabled, Michelle enrolled in a family care program — the kind of state program that’s supposed to help people who can’t drive, can’t easily care for themselves, need adaptive equipment. She asked for two things. Home-delivered meals, because she doesn’t drive. And a shower door — because she doesn’t have one. She was denied for both. She thinks she knows why.

Michelle: “I think it’s because these systems are so burnt out that they can’t handle any more cases. So they just deny because it’s easier to do that than anything else.”

Burnout. That word is going to come up a lot on this podcast — for patients, for caregivers, for advocates, and apparently for the case workers and social workers we depend on to keep these systems functioning. Michelle had an epiphany about it one day, and she did something I don’t think most people would have thought to do. She built a presentation about it. And then she started giving it. At conferences. At the National Association of Social Workers chapter in Wisconsin. At NAMI. At an autism conference.

The presentation is called “Lessons Through Laundry: How a Mom Found the Truth Behind the Fold.” And yes, when she delivers it, she folds laundry. Live. On stage. Because Michelle has anxiety, significant anxiety, and folding laundry is what she does when she’s anxious — and rather than pretend she doesn’t do it, she made it part of the talk. And part of the talk is also about how to combat burnout in the people who have oversight responsibilities — case workers, social workers, the people on the other end of the denial. Because if those people are burnt out, the system breaks at exactly the place where it’s supposed to catch you.

The other thing that struck me about Michelle is how she got to where she is now. Three years ago, she was a stay-at-home mom. She wasn’t anyone’s idea of an advocate. She’d never given a presentation in her life. And the first phase of her response to the crisis — she’d be the first to tell you — was not productive.

Michelle: “I used to call people begging for help, in a panic on the phone, just calling them in panic. And I was like, wow. I didn’t know what I was doing back then. I was in shock and didn’t know who to contact and what to do. If I would have sat back and kind of thought about things before I did that, it would have turned out a little bit better.”

This is one of the most important lessons in advocacy and one of the hardest to learn. The anger is real. The anger is justified. The anger is, honestly, fuel. But if the only thing on the other end of the phone is your anger, it’s going to bounce right off, because the person picking up the phone is also a person, and they did not personally design the system that’s failing you. Michelle had to learn how to communicate. How to be strategic. How to not be the crazy person calling again.

Three years later, she’s giving keynote presentations and bringing her laundry on stage. And she has one piece of advice for anyone who’s just starting out:

Michelle: “Just don’t give up. It’s worth it in the end. You keep advocating, it’s not gonna get worse, it’s gonna get better. You just keep trying and there’s nowhere it can go besides up when you’re at the bottom.”

Closing

So that’s four advocates. Four very different reasons to advocate. Greg, learning to make peace with a body that doesn’t always cooperate, and using humor to do it. Michele, transforming a personal denial into a state law. Vickie, fighting a $9,740 specialty pharmacy bill that was never supposed to be her bill in the first place. Michelle, turning a government program that hurt her family into a presentation that’s reaching social workers across her state.

Different stories. Different conditions. Different parts of the country. And yet — when I lay them next to each other — I keep hearing the same three things.

First — the system is designed to be exhausting. The denials, the appeals, the prior authorizations, the step therapy, the specialty pharmacy phone trees, the patient assistance paperwork — all of it works because most people, most of the time, give up. Less than one percent of denials get appealed. That’s not because patients are lazy. That’s because the system is wearing them down. On purpose, or by accident — at this point it almost doesn’t matter.

Second — there is a person behind every patient. Greg was somebody before he was a “myasthenia gravis patient.” He was a real estate guy from New Jersey. Michele was a young woman before she was a cancer survivor. Vickie was a wife and a Louisianan before she was a step therapy data point. Michelle was a stay-at-home mom folding her family’s laundry. None of them asked for the labels they ended up with. And every single one of them is more interesting than their diagnosis.

Third — none of them did it alone. Greg has his support group and his three C’s. Michele has the Texas Pharmacy Association and Patients Rising. Vickie has the National Psoriasis Foundation. Michelle has NAMI and the social workers chapter. They each plugged into something bigger than themselves. And that, more than any one piece of legislation, is what made them effective.

If you’re listening to this and you’re at the beginning of something — a new diagnosis, a denial letter, a system that suddenly stopped working for you — I want you to take one thing from these four people. You have to be the CEO of your own healthcare. That’s a phrase Michelle and I kept coming back to. Nobody is going to do this for you. Not your insurance company, not your specialty pharmacy, not necessarily even your doctor — bless them, they’re overwhelmed too. But there are people who will help. There are organizations that will help. There are policymakers — yes, on both sides of the aisle — who will listen. And there are advocates like Greg and Michele and Vickie and Michelle who have walked the road in front of you, and who are leaving a trail.

That’s all for this first episode of the State of the Patient Podcast. If something in here hit you — if you recognized your own story in one of theirs — I want to hear from you. Subscribe, share this episode with someone who needs it, and reach out: [CONTACT / SUBSCRIBE LINK].

For now — be well. Take care of each other. And remember, like Greg says — smiling is easy. And wonderful treatment. I’m Terry Wilcox. See you next week.

The State of the Patient Podcast is a production of Patients Rising. Listen and subscribe: [LISTEN LINK].