Every patient is a person first. It sounds obvious. But somewhere between the prior authorization forms, the step therapy protocols, the appeals letters, and the specialty pharmacy phone trees, that simple truth gets buried — and patients start to feel less like people and more like line items.

The first episode of the State of the Patient Podcast, hosted by Patients Rising CEO, Terry Wilcox, sets out to dig that truth back up. Titled “The Person Behind the Patient,” the episode introduces four advocates from four different corners of the country, living with four very different conditions. What connects them isn’t a diagnosis. It’s the moment each of them decided to stop being worn down by the system and start pushing back.

Greg: Finding humor and community after a 20-year diagnosis

Greg Josephs, a former real estate agent from New Jersey now residing in Virginia's 10th congressional district, has lived with myasthenia gravis (MG) — a neuromuscular condition — for more than two decades. His road to diagnosis in 2002 took six months and a parade of specialists, including one who suspected ALS before a chest X-ray finally identified a thymoma and pointed to MG.

Greg’s message isn’t about the disease. It’s about what comes after. MG, as he puts it, isn’t life-shortening — it’s life-limiting, and learning to live within those limits is its own kind of work. He runs a monthly support group built on what he calls the three C’s — comfort, compassion, and companionship — and offers newly diagnosed patients some of the most practical advice you’ll hear: build rest into your day, because unloading the dishwasher will take more energy than you think. His ask for policymakers is quieter than most: train the next generation of doctors to sit with uncertainty and treat the whole person, not just rush to a label.

Michele: When an algorithm denied her care three times

Michele Rayes, a licensed pharmacy technician from the 4th congressional district in Texas and a cancer survivor since age 22, became an advocate through her work — watching PBMs (pharmacy benefit managers) shape what her patients could and couldn’t get, and eventually realizing she’d been quietly absorbing the same problems herself, even paying cash out of pocket because it was cheaper than using her own insurance.

Last year, after the first-ever treatment for her rare chronic condition finally reached the market, her insurer denied it — three times — and sent the letter every patient dreads: “You’ve exhausted all appeals.” When Michele called to ask how each appeal had been reviewed, she learned that a human eye had never looked at any of them. Every denial was generated by AI. As Michele notes, less than one percent of denials are ever appealed — the system counts on people giving up. She didn’t. Her story became the face of Texas legislation banning AI-only insurance denials, and she helped write the protocol behind it.

Vickie: A $9,740 bill that was never supposed to be hers

Vickie Wilkerson, a longtime psoriasis and psoriatic arthritis advocate from Louisiana's 4th congressional district, has traveled to Washington five times — and has met her congressman, Speaker Mike Johnson, in his office. Her most recent fight, though, wasn’t with her insurance company, which approved her new biologic quickly. It was with the specialty pharmacy, which told her that her copay for a single shipment would be $9,740 — and wanted to ship the medication first and sort out the finances later. Biologics can’t be returned, so once the box ships, the patient owns it.

The pattern Vickie ran into is a familiar one — copay accumulators, maximizers, and alternative funding programs that divert patient assistance away from the patient. She pushed back, got the assistance program to cover what it was supposed to, and received her medication. But she now faces the same fight every three months. As she points out, if a five-time DC advocate who knows the system has to spend hours on the phone each quarter, what happens to the patient who sees “$9,740” and simply stops?

Michelle: Turning a crisis into a keynote

Michelle Castile, from rural Wisconsin, is the rare advocate whose healthcare crisis didn’t begin with a diagnosis — it began with her house. A government weatherization program made mistakes that created serious indoor air quality problems, which took two years and experts from across the country to diagnose. By then, her daughter had developed asthma, her son was chronically ill, and Michelle herself had become disabled and nearly lost her eyesight.

When the state family care program denied her requests for home-delivered meals and a shower door, Michelle concluded that overwhelmed, burned-out caseworkers were defaulting to “no.” Rather than give up, she built a presentation — “Lessons Through Laundry: How a Mom Found the Truth Behind the Fold” — that she now delivers to social workers, NAMI chapters, and conference audiences, folding laundry live on stage to make peace with her own anxiety. Three years ago she was a stay-at-home mom who had never spoken publicly. Her advice to anyone starting out: don’t give up, because when you’re at the bottom, there’s nowhere to go but up.

Three truths that tie them together

Across four stories, the same threads emerge. The system is designed to be exhausting — denials, appeals, and paperwork all work because most people give up, which is why fewer than one percent of denials are ever challenged. There is a person behind every patient — each of these advocates was someone with a full life before a label was ever attached to them. And none of them did it alone — each plugged into a community, an organization, or a support group that turned individual frustration into collective effectiveness.

That’s the throughline of the episode, and of the show itself: patients first, innovation as the engine, affordability as the standard, and anyone willing to help welcome at the table. As Terry reminds listeners, you have to be the CEO of your own healthcare — but you don’t have to be its only employee.

Listen and get involved

Listen to Episode 1, “The Person Behind the Patient" wherever you listen to podcasts or read the [FULL TRANSCRIPT]

Subscribe wherever you get your podcasts, and if one of these stories sounds like yours, we want to hear from you. Learn more about patient advocacy and the tools that helped these four advocates find their voice at PatientsRising.org.