Aired August 25, 2026 · 23 minutes
Blog: [Read the recap] Terry's Substack post: [SUBSTACK LINK]
Prescription Drug Affordability Boards were sold with patient hardship stories and a promise of relief at the pharmacy counter. Some have been operating for seven years. In this episode, Terry Wilcox talks with three women who have spent years inside this fight about what these boards actually cap, who the legislation says has to benefit, and what a quality-adjusted life year score of 0.13 looks like in a real person's life.
This transcript has been lightly edited for readability.
Terry: Hi, I'm Terry Wilcox, and this is the State of the Patient Podcast.
Tiffany: There are some shifts in really who this affordability savings is for. Anything that is said it's about patients and is led with hardship stories about patient needs — well, those reform efforts better be about us.
Bridget: Most people think that the upper payment limit caps what the patient pays out of pocket. None of that is true. You are still gonna be on the hook for the rest of that money.
Vanessa: Most of my autoimmune journey has been spent with heating pads and me trying to figure it out on a wing and a prayer.
Terry: Hi, I'm Terry Wilcox, and this is the State of the Patient.
For years now, patients have been promised something that sounds simple: affordability. We were told that policies moving through statehouses in our name, built on our hardship stories, would finally bring relief at the pharmacy counter. Today, those policies have a name: Prescription Drug Affordability Boards, or PDABs. Some have been operating for seven years.
And here's the uncomfortable question at the center of this episode. After all that time, have they saved a single patient a single dollar?
Today, three women who've spent years inside this fight are going to help us answer that. A patient researcher who ran the first study that ever asked patients what affordability even means. An advocate making sure the patients who get left out of those rooms are actually heard. And a woman in Colorado who can explain this tangled system better than almost anyone, because she is living inside it.
Let's start where the confusion starts.
Terry: So what actually is a PDAB? The clearest explanation I've found doesn't come from a policy paper. It comes from a patient. Bridget Dandaraw-Seritt lives in Colorado. She runs an advocacy group called ACT NOW, and she's sat through more of these board meetings than most of the people who vote on them.
Bridget: States have been passing things called PDABs, which are prescription drug affordability boards, where basically an appointed board will go through and use specific metrics to check to see whether they consider your medication affordable. Some have the authority to pass what's called a UPL, or an upper payment limit — basically just caps on what your insurance can reimburse your infusion center or your pharmacy.
Terry: A cap. Now that sounds like exactly what we want. I mean, who wouldn't want a cap? You'll never pay more than this. But listen to what that cap actually caps.
Bridget: It does not change the price of the medication, and it only caps what your insurance reimburses the pharmacy or an infusion center. You are still gonna be on the hook for the rest of that money.
Terry: Now hear that again slowly. It does not change the price of the drug, and it does not cap what you pay. It caps what your insurance reimburses, and you are still on the hook for the rest.
So where does the cap actually go? This is the part that surprised even Bridget.
Bridget: Insurance formularies are decided based on back-end rebates that are kicked back to the PBMs or insurance companies. If you cap what the insurance reimburses, the pharmaceutical company is not going to be offering those rebates back — and therefore your formularies across the entire drug category could change.
Terry: Rebates. The whole system runs on rebates the drug companies pay back to the middlemen. Cap the reimbursement, and those rebates can vanish. And when they do, the list of drugs your plan will even cover can shift right out from under you.
Now, one more thing before we move on — about who is and isn't in the room.
Bridget: So far, no state has patient representation as a voting member on their board. So patients are definitely not represented in this.
Terry: No state. Not one. There is no patient with a vote on any of these boards. Hold on to that as we go.
Terry: Now, if you're listening to this and thinking, I have never heard of any of this. I didn't know there was a board somewhere deciding whether my medication is worth it — I want you to hear from Vanessa Lathan. Vanessa leads the Patient Inclusion Council. She's spent fifteen years in public health and health policy, she lives with an autoimmune condition, and she was a full-time caregiver to her grandmother.
Vanessa: I think for me, this is a fight for everyone who doesn't have a voice. I think often we talk broadly about affordability and access, but we don't have the hard conversations around what affordability and access really look like for everyone.
And this is also a fight for myself. Being a patient, being an African American, millennial-age woman trying to show up in these spaces, living with invisible disabilities. It's a fight to address all of my medical conditions and say that I deserve a better quality of life.
Terry: I deserve a better quality of life. That's the whole thing, isn't it?
And when Vanessa talks to patients who have never heard of any of this, she is very careful about whose fault that is.
Vanessa: Some of you may not know, and that's okay. And it's not your fault. It is the healthcare system's fault. One of the things I always say — and we wonder why patients are not mobilized, or it's just the same patients mobilized — is because healthcare, health policy, public health talks at people, not with them. We talk in ways that are over people's heads.
Terry: It's not your fault. It's the system's.
This show has said from the beginning that the system is exhausting by design. I'm gonna say that again. The system is exhausting by design. And this is what that looks like in practice. A policy passes in your name, and nobody ever tells you.
Now, before we go further, Vanessa has something for anyone who's about to decide this episode isn't for them.
Vanessa: If you take a medication for something, you're a patient. Because often people like to put patients over here, like that's not me. No — if you go to the doctor for something, if you take a medication, you're a patient. And we want and need your story.
Terry: Did you hear that? If you take a medication, this is about you. Keep listening.
Terry: So if patients aren't in the room, who are these boards actually for? That's the question Tiffany Westrich-Robertson has been chasing. Tiffany is the CEO and co-founder of the advocacy organization AiArthritis. She lives with an autoimmune disease herself, and she helped build the national coalition behind this work.
And before we go one step further, I want to be fair about the people sitting on these boards — because Tiffany is.
Tiffany: I want to preface by saying these board members are volunteers. And you will hear them, most of them, over and over saying, "I did this because I want to help patients." And I believe them. I believe that they were told this is about saving money for patients. Some of them are realizing the disconnect.
Terry: These are volunteers who signed up to help patients, and they were told that's what this does. Nobody in this story set out to hurt anybody. The problem isn't the people, it's the mechanism.
And here's what Tiffany noticed early.
Tiffany: I started realizing a little bit of a disconnect from the advertisements that were saying prescription drug affordability, with hardship stories of patients and solving for patient out-of-pocket costs — but the participation just wasn't seemingly matching a solution that would put money back in patient pockets.
Terry: The ads say one thing, the mechanism says another.
Tiffany: There are no actual ways for these prescription drug affordability boards to implement these price caps that will directly impact patient out-of-pocket costs, because they are price caps for what the state, or the insurance company, or the pharmacy benefit manager pays.
Terry: So the cap is real, but it's a cap on what the state or the insurer or the middleman pays. And here's the detail I missed the first three times I read this. Whether any of this ever reaches you — it's not even a requirement. It's an option.
Tiffany: All of the legislation has a mechanism to help patients, or the healthcare system, or the state — even though they were marketed as for patients. If you look at the fine print, if you will, patients don't actually have to be the beneficiary, because it's an "or." They may pay $250 out of pocket; the next person pays zero. There is no current beneficiary, but the way it's moving, it's not the patient.
Terry: An "or." The patient, or the insurer, or the middleman, or the state. Four names on that list, and only one of them is you. And for the same drug, one patient pays two hundred fifty dollars while the next pays nothing. So a system-level cap can't even find the person who needs the help.
Let me tell you how little this is understood, even by the people writing the laws. I once sat with a legislator here in Virginia who told me point blank that we need a PDAB because of inflation. That's how far the word "affordability" can carry a policy that doesn't do what its name promises.
Terry: Here's where it stops being theory, because for the first time, somebody actually asked patients. Tiffany and her team built a survey — a real one, with room for patients to explain themselves.
Tiffany: The questions that we were being asked were not written in a way that was enabling us to share our entire truth. They were yes/no questions. There weren't any comment boxes. So it was really hard to be able to actually explain why we could or could not afford our prescription medications.
Terry: Yes-or-no boxes can't hold a patient's truth. So they opened it up. Five hundred and thirty-seven patients. And out of it came something that has never existed before: a definition of affordability written by patients.
Tiffany: Affordability is about more than the list price of a drug. Whether your insurance covers the medication you need. Whether your deductible is high and you cannot afford the treatment, even if you have insurance. Whether copay assistance counts, or doesn't, toward your deductible. Whether you could stay on a treatment without an insurance company non-medically switching you.
Terry: Affordability isn't the sticker price. It's the deductible, the coverage, the copay help that doesn't count, the switch your insurer makes for its own reasons.
And then the study found one thing I really can't stop thinking about.
Tiffany: Of those 537 respondents, almost one quarter of every single one of them said they paid more than one out-of-pocket cost for the same drug. And it was not just in the year — this was over the lifetime. What we called out-of-pocket cost shifting.
Fifty-one percent of those people reported their prescription both affordable and unaffordable at different times in the life cycle.
Terry: Fifty-one percent. Half the patients called the very same prescription affordable at one point in their life and unaffordable at another. If the same drug is both, then the problem was never just the price.
So why do patients actually stop taking their medicine?
Tiffany: Ninety-five percent of patients who stopped taking their medication and cited cost explained it was insurance-related challenges — such as coverage removal, high deductible, step therapy, or what's called a copay accumulator or a maximizer, which essentially is not allowing you to fully use your financial assistance.
Terry: Ninety-five percent. Insurance design, not the list price. The deductible, the step therapy, the accumulator that quietly keeps your copay card from counting. Those are the hardship stories being used to sell the caps.
And here's Tiffany's whole point in one breath.
Tiffany: They're citing patient hardship stories with solutions that are not going to fix those hardship stories. And if they said it's about us, then it better be about us.
Terry: Now, I don't want to leave you with the impression that every one of these boards is the same, because they aren't. Tiffany's team took that survey to the boards, and the responses split. Some of them really leaned in.
Tiffany: There are several who are trying. They are trying to listen to patients, and for those, we give them applause. There are a couple of PDABs that actually do not have the authority in their legislation to do the price cap. And those PDABs are listening to what patients say, and they are leading with solutions that directly impact out-of-pocket costs. So for those, we are also giving a big kudos and congratulations.
Terry: Hear that again, because it may be one of the most useful sentences in this episode. The boards that don't have the power 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.
And then there was the board that told Tiffany the quiet part out loud.
Tiffany: We have also had one of them not interested, and they did tell us the reason why — because they are actually not supposed to focus on out-of-pocket patient costs. They are supposed to focus on the system level of capping costs for insurance companies.
Terry: Not supposed to focus on out-of-pocket costs for patients. Huh.
Said plainly, on the record, about a policy called an affordability board. And I want to give them credit for the honesty. That is definitely more candor than most of this debate offers. But sit with what it means. The thing was never built to do what its name says.
Terry: Now there's one more truth in this data, and it's the one the affordability conversation never reaches. It comes back to Vanessa. And she starts somewhere I actually didn't expect — with how much she didn't know.
Vanessa: In my year of working with EACH and PIC, I've learned more about my autoimmune condition from Tiffany and fellow teammates than I ever have from any healthcare system, rheumatologist, nurse, all the things. And I consider myself to be privileged, in that I've worked in this space all of my life — healthcare, public health, health policy — have access to technology, and I wasn't able to figure this out.
Terry: Now think about that. A public health professional, fifteen years in health policy, living with an autoimmune disease herself — and she learned more from other patients than from her own doctors. If she couldn't get there on her own, what are the rest of us supposed to do?
And that gap does not fall evenly.
Vanessa: So what our survey showed is that communities of color are not often given access to specialty treatments such as biologics. I have never been on a biologic — never even heard of it until I've come here. Most of my autoimmune journey has been spent with heating pads and me trying to figure it out on a wing and a prayer, because I haven't been given lots of medication, or medication that has been effective.
Terry: Heating pads and prayer. She had never heard of a biologic. Because lowering a price doesn't help you if the medicine was never offered to you in the first place.
Vanessa: Putting out there that when you hear "affordability" — because the devil's in the details, as they say — it may look like this is gonna be for under-resourced, underserved communities. So maybe for those who are on Medicaid, low income, rural communities, remote communities, communities of color, young people.
But it's not really gonna be for us. Because if they do lower the costs or improve access, it's still not given to us, because we have biases that are in the healthcare field — with doctors, with physicians, and all of those things. And our surveys show that.
Terry: That's the part the word "affordability" hides. You can cap a price for a drug a patient was never offered.
And asking people to keep telling that story, over and over, into a system that hasn't listened — that costs them something too.
Vanessa: There's a lot of trauma attached to retelling your story and living those moments over and over and over again, and getting that hope up that maybe this time something different is gonna happen. But we can't stop now.
Terry: I want to come back to Bridget, because there's a number I need you to understand — and a person behind it.
When these boards decide whether a drug is worth it, many of them lean on something called a quality-adjusted life year. Here's Bridget on what that number is really made of.
Bridget: Quality-adjusted life year data is not based in reality. It's based on scores of one being perfect health and zero being it doesn't do anything and you're just gonna die. And as we know, most people with chronic illness will never ever be in perfect health.
Terry: One is perfect health. Zero is, you're going to die. Now, Bridget takes a biologic she has been on for twelve years. It works. Listen to its score.
Bridget: My drug has a value of point one three, and this drug has been life-changing for me. I've been on it twelve years and it clearly has been working.
Terry: Zero point one three. That's the number a system uses to decide whether the drug that gave Bridget her life back is worth covering.
And this is what zero point one three actually looks like.
Bridget: My spine has fully collapsed from a rare genetic disorder that I have. I'm still walking. I'm still gardening. I have to use a wheelchair, you know, for long distances, or if I'm gonna be doing things for a long time — but I'm still able to participate in life.
I just wanna be able to get up and change the channel when I cannot find my remote. Simple things. Taking my grandkids outside. That's been huge.
Terry: Changing the channel. Taking her grandkids outside. This is the life a spreadsheet scored at zero point one three.
I say this often: there is a person behind every one of these numbers, and the number cannot see her.
Terry: So what do you do with all of this? First, if your state is thinking about starting one of these boards, hear Bridget out.
Bridget: Run away.
Terry: And second, the fight isn't over, and it isn't hopeless. Tiffany.
Tiffany: We need hundreds, we need thousands of patients to continue to share their experiences. We need to take back the control. If this was about us, it needs to be about us.
Terry: Third, your story is the thing that changes this. Not a lobbyist's talking points. Yours. And if you're sitting there thinking, I'm not the advocate type — you don't have to be.
Vanessa: Advocacy doesn't mean — you know, maybe you don't want to participate in the survey experience just yet, or maybe you don't want to share on Facebook or talk to a legislator. Talking to us helps. Sharing a post on social media helps. Advocacy looks like anything. You wanna start with where you're at, and that is advocacy. There's nothing too small or nothing too big when we say advocacy.
Terry: Start where you're at. The coalition behind this work calls it the Patient Truth Campaign, and they'll take your story in any form you can give it — video, writing, a few sentences. And if your state has a PDAB, or is even thinking about one, go meet your legislators and show them the evidence. Because right now, they believe the word on the label.
Vanessa gets the last word, because she says it better than I can.
Vanessa: I like to say often with Tiffany: it's PDABs today, but what is it gonna be tomorrow? What was it thirty years ago? So this is patients saying that we are enough, and we're taking our power back. It's time to fight back. It's time to take our power back. And we got this. We can do it.
Terry: Affordability is not a price. It's a relationship — between your coverage, your deductible, your assistance, your income, and your life. And if a policy is built in our name, then we have to be the ones it's actually for.
Before I let you go, three quick things.
Please follow the show. If you're on YouTube, hit subscribe — that's actually where most of you find us. Everywhere else, hit follow, and the next one comes to you.
Leave us a rating and a review, especially on Apple Podcasts. I know reviews feel like they disappear into the void, but they don't. They're how the next patient who needs this show actually finds it.
And send this to one person. The friend fighting a denial, the neighbor who just got the diagnosis, the sister doing all the caregiving alone.
If you have a story of your own, we want it. Everything's at patientsrising.org. Because there is a person behind every patient.
I'm Terry Wilcox. Until next time — share your story, know your legislators, and be the CEO of your own healthcare.
Tiffany Westrich-Robertson — CEO and co-founder, AiArthritis. Lead architect of the patient experience survey discussed in this episode.
Vanessa Lathan — Patient Inclusion Council.
Bridget Dandaraw-Seritt — ACT NOW Colorado.
Patients Rising is a member of the Patient Inclusion Council coalition.
Share your story with the Patient Truth Campaign: [PIC STORY FORM LINK]
The State of the Patient Podcast is produced by Patients Rising. New episodes every other Tuesday. Follow the show on Apple Podcasts, Spotify, YouTube, and wherever you listen.
Note: figures and characterizations in this episode are as described by the speakers. Statistics cited come from a patient experience survey of 537 respondents conducted by AiArthritis and coalition partners.