The State of the Patient with Terry Wilcox

Patients Rising
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Every patient has a number nobody warned them about — a denial letter, a copay, a bill that shouldn't exist. State of the Patient starts there. Host Terry Wilcox, co-founder of Patients Rising, brings on the patients fighting the system and the doctors, biotech founders, regulators and lawmakers who can actually change it — no boardroom spin, no talking points. Free markets should innovate. Safety nets should catch people. This show keeps both honest.

Episodes

  1. 2d ago

    Summit Highlights: Who Really Benefits from 340B?

    Of the money the 340B drug discount program moves each year, how much actually reaches the patient, and how would anyone know? At the 2026 State of the Patient Summit in the Kennedy Caucus Room on Capitol Hill, Terry Wilcox put that question to three people who see the program from very different places. Together they cover the four reform proposals now in front of Congress, the fights over contract pharmacies and rebates, what patients should pay, and whether the help should go to hospitals at all or straight to patients. The episode opens with the story of Virginia King, a woman being treated for cancer in New Mexico whose hospital billed her insurer $22,700 for a drug with a list price of about $2,700, as reported by the New York Times in January 2025. Guests: Thomas Johnson, Executive Director, Alliance to Save America's 340B Program (ASAP 340B) Anthony DiGiorgio, DO, MHA, Assistant Professor of Neurological Surgery, UC San Francisco Ryan Long, Director of Congressional Relations, Paragon Health Institute Chapters: 00:00 A $22,700 bill 01:22 One question for the panel 01:52 How 340B works, and who was on stage 03:12 Four bills in Congress 04:38 Where the money actually goes 06:30 Is 340B free to taxpayers? 08:58 The bankruptcy files, and a clarification 11:28 What "broken" means 13:20 Contract pharmacies 14:26 Rebates 15:33 Capping what patients pay 17:12 A hospital subsidy, not a patient program 19:55 Why don't hospitals have to show their work? 21:16 Can technology fix it? 22:45 Give the subsidy to patients 24:35 Final thoughts 27:36 What stays with me Full transcript and show notes: [LINK] Sign-up for alerts: [LINK] State of the Patient is a podcast from Patients Rising. New episodes every other Tuesday.

  2. Oct 6

    Summit Highlights: Alzheimer's Through a Family's Eyes

    Chad Fink was fifty-one when he asked his wife which exit to take, on a drive to his grandson's soccer game he had made a hundred times. The next signs were a missed mortgage payment and a missed car payment, from the man who had handled the family finances for their entire marriage. When he told a neurologist he thought he had dementia, he was told he was too young. A year and a second neurologist later, he had a diagnosis of younger-onset Alzheimer's disease. Today he is fifty-four, he cannot drive, and his wife Jenn has resigned from her classroom to care for him full time. At the State of the Patient Summit on Capitol Hill, Jenn and Chad told that story in a Senate hearing room — including what it costs, down to the dollar, because Jenn decided somebody needed to say it out loud. Then four people who work on this every day explained why it took so long and what would have to change: family physician Travis Wilkes on why a vague complaint from a fifty-one-year-old gets missed in primary care, Jim Taylor of Voices of Alzheimer's on the twenty-nine-month wait that keeps new treatments out of reach for people diagnosed before sixty-five, Deanna Darlington on who never gets as far as that first appointment, and filmmaker Christopher Durrance on what the country quietly assumes families will absorb. Every barrier in this episode is one somebody built. That is also what makes them fixable.

  3. Sep 22

    It Doesn't Have to Be This Way: The 2026 Rise Awards

    Meg Didier was born with half a working heart. When she talks about three years, she doesn't mean a regulatory timeline. She means whether she's there for her daughter's kindergarten graduation, and whether she can put off a transplant a little longer. Three years is how much she says one policy idea can take off the wait for treatments for patients like her — and the economist who designed it is one of nine people Patients Rising honors this week. In this episode, Terry Wilcox tells the stories behind the 2026 Rise Award honorees, in the words of the people who know them best: a former FDA official, a Research!America leader, a White House policy veteran, Mark Cuban and his company's CFO, a governor, a twelve-year-old boy and his mother, and the sister and friend of a woman who has cared for her grandmother through Alzheimer's for nine years. An economist whose idea two senators who agree on nothing carried into law together. A policy analyst who did the arithmetic no one else would. A drug company that grows without a marketing budget. A convener, a transparency crusader, a surgeon, a creator who refuses to be edited, and a documentary that makes caregivers visible. Every one of them was told that the thing they wanted to change was simply how healthcare works. None of them believed it. We honor them on Thursday, September 24, at the State of the Patient Summit in the Kennedy Caucus Room of the Russell Senate Office Building. Chapters: 0:00 Cold open: three years 2:06 The architects: David Ridley, Policy Innovation Award 7:57 Brian Blase, Policy Integrity Award 10:40 Alex Oshmyansky and Cost Plus Drugs, Access Disruptor Award 13:51 The convener: Deanna Darlington, Demeshia Montgomery Impact Award 16:34 Caregiving, the documentary: Caregiving Impact Award 17:19 Out loud: Cynthia Fisher, Transparency Trailblazer Award 20:32 Baylen Dupree, Advocacy Out Loud Award 22:38 Dr. Elisabeth Potter, Courage in Care Award 23:00 Kris McCabe and Grams, Heart of Caregiving Award 25:05 Why we do this

  4. Sep 9

    Under Penalty of Perjury

    A federal program called 340B lets many of the country's largest nonprofit hospitals buy outpatient drugs at deep discounts — 25%, 50%, sometimes 70% off — on the promise that the savings go to caring for low-income and vulnerable patients. In 2024, 340B moved more than $81 billion. But hospitals aren't required to show where those savings are used, and no patient is ever told the discount touched their prescription. There's no box on your receipt that says "I'm a 340B patient." So Patients Rising went looking in the one place the relationship between a hospital and a struggling patient becomes a public record: bankruptcy court. Over the past year, we reviewed 903 consumer bankruptcy filings across six states — Virginia, Wisconsin, Washington, Colorado, Louisiana, and Maine. In 406 of them (45%), the household owed money to a hospital we could verify as a 340B participant — $6,622,650 in debt, sworn to under penalty of perjury by families listing everything they owed in the world. In this fully narrated episode, host Terry Wilcox walks through what those filings show, what they honestly don't, and three reforms that would finally let the public see whether 340B works the way it's supposed to. This isn't a call to cut 340B. It's a call to be able to see it. SHOW NOTES In this episode: what the 340B drug-discount program is and why Congress created it · why bankruptcy filings are the rare public record that makes this visible · the six-state review of 903 filings (VA, WI, WA, CO, LA, ME) · what the record reveals about the system's own opacity — patients who could only name a parent corporation, and bad debt that can be counted as "community benefit" · and three reforms: define "340B patient," separate charity care actually delivered from bad debt written off, and disclose 340B at the point of care. The claim, stated narrowly: the same nonprofit 340B systems recur as creditors in these filings, and the public cannot see whether those systems' discounts ever reached the patients who ended up owing them. We do not claim 340B caused these bankruptcies. Read the research: Medical Bankruptcy in America — 340B Hospitals as Creditors in Consumer Bankruptcy: A Six-State Review of 903 Filings (Patients Rising, July 2026) → [WHITE PAPER LINK] More from our bankruptcy series / Patients' Right to Know: [SERIES LINK] Share your story: patientsrising.org

  5. Aug 25

    Built in Our Name: PDABs and the Patient Truth

    Patients were promised affordability. Prescription Drug Affordability Boards have been operating for seven years — so have they saved a single patient a single dollar? Terry Wilcox talks with Tiffany Westrich-Robertson, Vanessa Lathan, and Bridget Dandaraw-Seritt about what these boards actually cap, who actually benefits, and the number that scored one woman's life at 0.13. SHOW NOTES:Patients were promised affordability. Seven years in, who is it actually for? Prescription Drug Affordability Boards — PDABs — were sold with patient hardship stories and a promise: relief at the pharmacy counter. Some have been operating since 2017. In this episode, three women who have spent years inside this fight explain what these boards actually do, and what they don't. Bridget Dandaraw-Seritt of ACT NOW Colorado breaks down the mechanism in plain language — including the part most people get wrong about what an upper payment limit actually caps. Tiffany Westrich-Robertson of AiArthritis walks through the first study that ever asked patients what affordability means to them, and shares the fine-print detail that determines who has to benefit. Vanessa Lathan of the Patient Inclusion Council explains why lowering a price doesn't help a patient who was never offered the medicine in the first place. It's a fair conversation. The people serving on these boards are volunteers who signed up believing this would help patients — and some boards are genuinely listening. But if a policy is built in our name, patients have to be the ones it's actually for. In this episode — What a PDAB is, and what an upper payment limit actually caps — Why no state currently seats a patient as a voting member — The survey of 537 patients that produced a patient-written definition of affordability — Why 51% of patients called the same prescription both affordable and unaffordable — Why 95% of patients who stopped a medication over cost pointed to insurance design — What a quality-adjusted life year score of 0.13 looks like in a real person's life — How to share your story with the Patient Truth Campaign GUESTS: Tiffany Westrich-Robertson, CEO, AiArthritis — lead architect of the Patient Experience Survey Vanessa Lathan, Patient Advocacy & DEIA Lead, Patient Inclusion Council Bridget Dandaraw-Seritt, ACT NOW Colorado Take action: Share your story with the Patient Truth Campaign at [PIC STORY FORM LINK]. Learn more at patientsrising.org. Patients Rising is a proud member of the Patient Inclusion Council coalition. There is a person behind every patient. CHAPTER MARKERS: 0:00 Cold open 0:44 The promise 1:55 What a PDAB actually caps 4:39 It's not your fault 7:11 Affordability for whom? 10:35 What 537 patients said 14:16 Who's actually listening 16:05 Who gets left behind 19:01 What 0.13 looks like 21:05 What you can do

  6. Aug 11

    The Long Goodbye: A Personal Story

    They call Alzheimer's the long goodbye. But a goodbye is something you get to say. This episode is different. It's personal. Terry's stepmother Sandy spent forty years at the Colorado Hospital Association, where she was Director of Education and Member Services. She started forgetting things at fifty-eight. Her responsibilities were taken away one at a time until there was nothing left to take. She wasn't ready to retire. Nobody tested her — in that era, there was no test to give. Sandy died last week. Today there is a test. The FDA has cleared blood-based diagnostics that detect the biological markers of Alzheimer's — a blood draw, in the same tube they fill at your annual physical. Medicare does not cover them as screening. Commercial insurance is under no requirement to cover them at all. Which leaves out the people with the most to gain: working-age adults in their fifties and early sixties, still inside the window where detection changes what's possible. In this episode: what this disease actually takes, and in what order. The twelve million Americans providing unpaid dementia care. What COVID did to people who could not be told why their families stopped coming. Why treatment eligibility is governed by stage, not age. And two bipartisan bills — with 228 members of Congress behind one of them — that are still sitting in committee. There is a person behind every patient. With this disease, that isn't a slogan. It's the whole fight.

  7. Jul 28

    The Patch in the Pipeline

    The most common cancer in the world doesn't show up on a scan. It shows up in your bathroom mirror. Basal cell carcinoma gets waved off as "just skin cancer" — five million new cases a year, and a system so backed up that millions wait months for the standard surgery. In this episode, Terry follows one cancer through four very different lives: Kay Frazer, a retired dentist from Texas who spotted her own cancer before her dermatologist did. Mark Smith is from Tennessee, where he spent four decades working in telecommunications, a lot of it outdoors.Julie Breneiser, Director of Pharmaceutical Relations at the Gorlin Syndrome Alliance, who has had roughly a thousand basal cell carcinomas — and watched her community lose a treatment that was working. Dr. Raza Bokhari of Medicus Pharma, whose investigational SkinJect patch — not yet FDA-approved — could change how this cancer is treated, starting with the patients who need it most. It's a story about a red dot, a knife, a failed trial, and a LinkedIn message that changed everything. Because every patient has a number nobody warned them about — and Julie's is a thousand. Wear your sunscreen. Check your mirror. And follow State of the Patient wherever you listen.

  8. Jul 14

    The Person Behind the Patient

    Four advocates, four conditions, four corners of the country — and one system built to wear patients down. Meet the people behind the patient. Every patient is a person first — somebody with a job, a family, a garden, a beagle they walk in the morning. Then something happens, and suddenly they're navigating prior authorizations, step therapy, and specialty pharmacy phone trees. In the debut episode of the State of the Patient Podcast, host Terry Wilcox sits down with four advocates who refused to be worn down: Greg Josephs (New Jersey) has lived with myasthenia gravis for 20+ years and uses humor to meet a body that doesn't always cooperate — "I meant to do that."Michele Rayes (Texas), a pharmacy tech and cancer survivor, discovered an algorithm — not a human — had denied her appeals three times. She turned her story into a state law banning AI-only insurance denials.Vickie Wilkerson (Louisiana) was handed a $9,740 specialty pharmacy bill for a single shipment her insurance had already approved — and pushed back.Michelle Castile (Wisconsin) turned a government program that harmed her family into "Lessons Through Laundry," a keynote she delivers to social workers while folding laundry live on stage. Different stories, same three truths: the system is exhausting by design, there's a real person behind every patient, and nobody does it alone. If you're at the beginning of something hard, this one's for you. Learn more and get involved at PatientsRising.org.

  9. Trailer

    Introducing State of the Patient with Terry Wilcox

    Every patient has a number nobody warned them about — a denial letter, a copay, a bill that shouldn't exist. State of the Patient starts there. Host Terry Wilcox, co-founder of Patients Rising, talks to the patients fighting the system and the doctors, researchers, biotech founders, and policymakers who can actually change it. Free markets innovate. Safety nets catch people. Both have to coexist for healthcare to work. New episodes every other Tuesday. Follow now so they land right in your feed. New episodes every other Tuesday. Follow now so they land right in your feed.

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    8 Episodes

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Every patient has a number nobody warned them about — a denial letter, a copay, a bill that shouldn't exist. State of the Patient starts there. Host Terry Wilcox, co-founder of Patients Rising, brings on the patients fighting the system and the doctors, biotech founders, regulators and lawmakers who can actually change it — no boardroom spin, no talking points. Free markets should innovate. Safety nets should catch people. This show keeps both honest.

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